October
21
 

US Senator discovers that she is at least 1/1024 Native American

Senator Elizabeth Warren  

Massachusetts Senator Elizabeth Warren has her eyes on the White House. With the election two years away, she is crafting her image as a progressive Democrat. However, one troubling issue is her family tree. Between 1986 and 1995 Warren was listed as a member of a racial minority in the Association of American Law Schools Directory. Harvard Law School also identified Warren as a "woman of color". This was based on a family tradition that she had Cherokee ancestors.  

Her political opponents are sceptical and media investigations have thrown doubt on the claim. President Trump ridicules mercilessly her as “Pocohontas” and even promised to give US$1 million to a charity if she took a test to prove that she has Native American heritage.

Finally Warren took up the challenge. A leading geneticist, Carlos Bustamante, of Stanford University, analysed her DNA. The result – as announced in a promotional video (see below) – is that she is between 1/64 and 1/1024 Native American – ie, 6 to 10 generations ago.

Will the genetic analysis do her any good? Predictably President Trump has declined to honour his bet. “Pocahontas (the bad version), sometimes referred to as Elizabeth Warren, is getting slammed,” he tweeted. “She took a bogus DNA test and it showed that she may be 1/1024, far less than the average American. Now Cherokee Nation denies her, ‘DNA test is useless.’ Even they don’t want her. Phony!”

On her website Warren only claims that her ancestors were vaguely Native American, not Cherokee, and has not claimed tribal citizenship. Cherokee Nation Secretary of State Chuck Hoskin Jr insists that she is not Cherokee.

"A DNA test is useless to determine tribal citizenship. Current DNA tests do not even distinguish whether a person’s ancestors were indigenous to North or South America. Sovereign tribal nations set their own legal requirements for citizenship, and while DNA tests can be used to determine lineage, such as paternity to an individual, it is not evidence for tribal affiliation.

Using a DNA test to lay claim to any connection to the Cherokee Nation or any tribal nation, even vaguely, is inappropriate and wrong. It makes a mockery out of DNA tests and its legitimate uses while also dishonoring legitimate tribal governments and their citizens, whose ancestors are well documented and whose heritage is proven. Senator Warren is undermining tribal interests with her continued claims of tribal heritage."

The fracas shows both sides of the public’s growing interest in ancestry testing. But while the genetic information may be accurate; as history it is often bunk.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
21
 

Win for conscientious objection in Norway

Norway’s Supreme Court has ruled in favour of conscientious objection and freedom of conscience for doctors. The Court found that Dr Katarzyna Jachimowicz acted within her rights when refusing to IUDs because of moral objections. The Court told government health authorities to respect the right to conscientious objection for medical professionals in their employment.

“Today’s Supreme Court decision marks an important step in the right direction, not only for doctors, but for people of faith in all professions. The ruling protects one of the most fundamental rights, the right to act in accordance with one’s deeply held beliefs. Dr. Jachimowicz takes her vocation as a medical professional seriously. She vowed to protect life, and objected to having any part in taking it. The Court established today that she had every right to do so,” said Dr Jachimowicz’s lawyer, Håkon Bleken.

“Nobody should be forced to choose between following their conscience or pursuing their profession. We welcome this ruling from the Norwegian Supreme Court. It will set new standards for the protection of fundamental conscience rights in Norway and beyond,” said Robert Clarke, of ADF International, a US-based group that supported the case.

In 2015, Dr Jachimowicz was sacked as a doctor working for municipality of Sauherad, although when she was hired in 2011, the municipality knew of her objections. A lower court supported her but healthcare authorities appealed. The case was then heard at the Supreme Court of Norway at the end of August 2018.

In its judgement the Court (PDF) cited a ruling by the European Court of Human Rights:

“... as enshrined in Article 9, freedom of thought, conscience and religion is one of the foundations of a 'democratic society' within the meaning of the Convention. In its religious dimension it is one of the most vital elements that go to make up the identity of believers and their conception of life, but it is also a precious asset for atheists, agnostics, sceptics and the unconcerned. The pluralism indissociable from a democratic society, which has been dearly won over the centuries, depends on it.”

“This judgment sends a clear message to the Norwegian authorities that conscience is a fundamental right under the European Convention on Human Rights which must be protected,” said Clarke.

The municipality of Sauderad was disappointed with the outcome of the case. “I am very surprised and disappointed with the outcome of this case, and the verdict that allows the layman to reserve reserves for conscience reasons in his municipal practice, said its mayor, Mette Haugholt.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
21
 

Stephen Hawking, transhumanist

Posthumous essays reveal that the renowned physicist Stephen Hawking believed in transhumanism. In Brief Answers to the Big Questions, he responds to queries posed to him by his readers over the long decades of his professional life and crippling illness. Will humanity survive? Remains to be seen. Should we colonize space? Yes. Does God exist? No. Do genetically modified humans threaten humanity? Yes.

 “I am sure that during this century, people will discover how to modify both intelligence and instincts such as aggression,” he wrote.

“Laws will probably be passed against genetic engineering with humans. But some people won’t be able to resist the temptation to improve human characteristics, such as memory, resistance to disease and length of life.”

“Once such superhumans appear, there will be significant political problems with unimproved humans, who won’t be able to compete,” he wrote. “Presumably, they will die out, or become unimportant. Instead, there will be a race of self-designing beings who are improving at an ever-increasing rate.”

Despite his brilliance, he fretted about our ever-growing dependence upon technology.

“Our future is a race between the growing power of our technology and the wisdom with which we use it. Let’s make sure that wisdom wins,” he wrote.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
21
 

Queensland decriminalises abortion

Rally in Brisbane / Glenn Hunt AAP 

Queensland has become the latest Australian state to decriminalise abortion. On Wednesday MPs voted 50 to 41 to make the make current legislation more permissive for supporters of abortion and more restrictive for its opponents.

The Termination of Pregnancy Bill removes the procedure from the criminal code and allows abortion on request up to 22 weeks. After 22 weeks an abortion can be performed with approval of two doctors.

The new law forces conscientious objectors to refer women to a doctor who will perform an abortion. It also mandates bubble zones of 150 metres around clinics to protect clients from harassment.

Deputy Premier Jackie Trad welcomed the new law. "The right of women to control their own reproduction, their own bodies, is such an important part of equality in our society," she said. "To prioritise the rights of a fetus above that of a woman is something that I find offensive. In this day and age, I think that is something that doesn't belong in our society — it's something that is familiar to me from The Handmaid's Tale, rather than Queensland legislation in the 21st century."

In a two-day debate in Queensland’s unicameral legislature, 69 out of 93 members spoke. One poignant contribution against the bill came from MP

Nick Dametto. He said that his wife fell pregnant while the couple was still in high school and unmarried. "It would have been easier to abort — no one would ever have known," he said. "It would have changed our lives and we would be in a completely different place today." However, he would not be able to live with the "killing of our unborn son or daughter" on his conscience.

Another MP, Ted Sorensen, declared that he was a “survivor” of an unwanted pregnancy. “If this law were present in those days, I would not be alive to speak on behalf of all of the babies who have the right to live – and I believe that I had the right to live,” Mr Sorensen said. “I still believe that. I do not believe that some minister opposite can bring a bill to this house that says, ‘Terminate that pregnancy’. I feel that this bill we are debating today should be called ‘killing Ted bill’”.

New South Wales is now the only Australian jurisdiction where abortion is a criminal offence.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
20
 

Harvard calls for retraction of dozens of studies by stem cell researcher

A world-renown cardiac researcher and former Harvard Medical School professor has been accused of fabricating or falsifying the data in 31 of his published studies.

Piero Anversa is an Italian-born researcher who rose to fame in the early 2000s after publishing pioneering studies on the regeneration of the heart tissue by stem cells. Anversa moved to Harvard Medical School and Brigham and Women’s Hospital in 2007, and was appointed a full professor in 2010.

But Anversa left Harvard in 2015 after questions were raised about the veracity of his research. Now, officials from Harvard Medical School and Brigham and Women’s Hospital in Boston have recommended that that 31 papers from a former lab director be retracted from journals. The papers “included falsified and/or fabricated data,” according to a statement to Retraction Watch and STAT from the two institutions.

Last year, the hospital agreed to a US$10 million settlement with the US government over allegations Anversa and two colleagues’ work had been used to fraudulently obtain federal funding. Stem cell researchers at other labs around the US have routinely failed to replicate Anversa’s results.

Some researchers have welcomed the investigation into Anversa’s research, saying that the idea of regenerative stems cells existing in the heart is implausible. “It really is a relief that this has been corrected”, said Jeffery Molkentin, a researcher at Cincinnati Children’s whose lab was among the first to question the basis of Anversa’s results in a 2014 paper in Nature. “There are no stem cells in the heart. Quit trying to publish those results”.

Experts have expressed concern that a clinical trial based on Anversa’s research is continuing to recruit patients.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
20
 

Major American medical group drops opposition to euthanasia

One of America’s largest medical associations has dropped its long standing opposition to euthanasia, voting at a national meeting to instead adopt a position of “engaged neutrality”. The American Academy of Family Physicians (AAFP) represents doctors who specialise in family medicine, and has over 131,000 members.

At the Academy’s 2018 Congress of Delegates in New Orleans earlier this month, over two-thirds of delegates voted to change the position, with several representatives giving impassioned speeches about how the availability of euthanasia could help ease the suffering of patients.

The new resolution passed by the delegates also calls on the AAFP to reject use of the phrase "assisted suicide" or "physician-assisted suicide" in its own formal communications and to direct the Academy's delegation to the AMA to promote the same action in the House of Delegates. The term preferred by the academy's representatives is "medical aid in dying".

Dr. Barbara Golder, a board member of the Catholic Medical Association and editor-in-chief of its Linacre Quarterly, was critical of the AAFP’s decision. She said the move was “very, very disappointing” but should not necessarily be considered a full victory for backers of assisted suicide.

“Some people will want to look on this as a great achievement in terms of advancing physician-assisted suicide, and it certainly puts us on a slippery slope, but I think it’s also important to recognize that the AAFP did not endorse it,” Golder said.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
20
 

Social prescribing and the bioethics of loneliness

This week the British government unveiled an ambitious plan to combat the country’s “loneliness epidemic”, including recommendations that doctors prescribe art lessons and dancing classes to lonely patients.

GPs will be encouraged to refer patients to social activities and voluntary services instead of drug-based treatments as part of the new cross-party government strategy unveiled by Prime Minister Theresa May.

“Loneliness is a reality for too many people in our society today… it can affect anyone of any age and background”, Mrs May said. “This strategy is only the beginning of delivering a long and far reaching social change in our country - but it is a vital first step in a national mission to end loneliness in our lifetimes”.

In the UK, about a fifth of people say they are lonely; around 200,000 older people have not had a conversation with a friend or relative in more than a month.

The government has released a comprehensive report with strategies to tackle loneliness, centred around three key recommendations: invest in research to figure out what causes loneliness, measure its effects, and what solutions work; embed loneliness into broad social policy, but also develop tailored interventions for trigger points, like the loss of a spouse or a job; and create a “national conversation” around the subject.

Mrs May has pledged £20 million of funding to implement the anti-loneliness strategies, including £11.5 million for voluntary, community and charitable organisations.

******

Across the Atlantic, policy makers are similarly concerned about loneliness, with many experts describing it as a “public health crisis”. A 2010 study of Americans over the age of 45 found that a little over one-third (35%) of the survey respondents were categorized as lonely. And a 2018 Kaiser Family Foundation/The Economist survey found that 22% of US adults “always or often feel lonely, or lack companionship, or else feel left out or isolated”.

In a recent blog post, bioethicist Craig Klugman speculated about what a “bioethics of loneliness” might look like. Klugman is concerned that surveys and analysis of the loneliness epidemic might reflect a narrow understanding of what constitutes social connectedness.

“I suggest that a bioethics of loneliness would take an interdisciplinary approach to examining what questions one should be asking, and to determining whether the change represents an exercise in autonomy or is in fact causing real harm. The fact that older measures of engagement are not met, does not mean that social engagement is at risk. We should not simply accept the headlines but rather should take a critical eye to analyzing the data, examine the change in technologies and how people interact, and then offer an informed, ethical perspective on our brave new world”.


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
20
 

Should we be doing more to prepare for the next pandemic?

This year marks 100 years since the 1918 outbreak of the Spanish flu, an influenza pandemic that killed more than 50 million people worldwide, or 1 in 20 people alive at that time.

Some commentators have warned of the “reasonable probability” of another major pandemic that kills tens of millions of people worldwide in the next two decades. And many are concerned that we are not adequately prepared.

Writing in the magazine Foreign Policy, former Obama counterterrorism advisor Lisa Monaco and University of Washington health policy analyst Vin Gupta have criticised the Trump Administration’s lack of investment in pandemic preparedness measures. According to Monaco and Gupta, US investment into pandemic preparedness has declined to its lowest levels since 2014 West Africa Ebola response. The investments made after the 2014 Ebola crisis have been slashed in recent proposed federal budgets from the Centers for Disease Control (CDC), the agency that works to stop deadly diseases in their tracks, and the US Agency for International Development, which responds to international disasters, including the Ebola outbreak.

The prevailing laissez-faire attitude toward funding pandemic preparedness within President Donald Trump’s White House is creating new vulnerabilities in the health infrastructure of the United States and leaving the world with critical gaps to contend with when the next global outbreak of infectious disease hits.

The authors are concerned particularly by reports that the transmission of potentially deadly zoonotic diseases, where pathogens move from animals to humans, is rising at an alarming rate.

Writing for Science Magazine earlier this year, CDC researchers Jessica Belser and Terrence Tumpey said that continued research, vaccine development, and preparedness are essential to ensure that such a devastating event like the 1918 Spanish flu outbreak is not repeated.

We are no doubt more prepared in 2018 for an infectious disease threat than in 1918. But it is critical to remember that preparation only stems from a global commitment to share data about viral isolates, support innovative research, and dedicate resources to assess the pandemic risk of new and emerging influenza viruses from zoonotic reservoirs.


This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
20
 

Controversy surrounds Canadian Medical Association’s withdrawal from world body

As we have already reported, the Canadian Medical Association resigned suddenly and dramatically from the World Medical Association at the WMA’s annual meeting in Reykjavik. The president of the CMA, Dr Gigi Osler, explained that the incoming president of the WMA, Dr Leonid Eidelman, had plagiarised a few sentences from press releases and blogs and from a speech given by the former CMA president, Dr Chris Simpson.

"As an organization that holds itself as the arbiter of medical ethics at the global level, the WMA has failed to uphold its own standards,” said Dr Gigi Osler, the current CMA president. “The CMA cannot, in all good conscience, continue to be a member of such an organization.”

To observers, this seemed like a bizarre reason for storming out of the WMA. In a letter to associate members of the CMA, the WMA Secretary-General explained that Dr Eidelman had apologised and explained that his text had been written by speechwriters. Since English is the fourth language of Dr Eidelman, a Latvian migrant to Israel, this seems plausible.

In Kloiber’s version of events,

The Council (and later the General Assembly) accepted this apology and did not grant the CMA delegation’s request to ask for his immediate resignation. The CMA delegation then left the room and formally resigned later the same day.

What was the real reason? The CMA insists that it the WMA’s low ethical standards. However, it could be due to the WMA’s refusal to alter its opposition to euthanasia. Its current policy is:

“Physician-assisted suicide, like euthanasia, is unethical and must be condemned by the medical profession. Where the assistance of the physician is intentionally and deliberately directed at enabling an individual to end his or her own life, the physician acts unethically."

However, euthanasia and assisted suicide are now legal in Canada and strongly supported by the CMA. In fact, the Canadian and Dutch delegations tried to get the WMA to adopt a position of neutrality. This failed, as did a German attempt to soften the WMA’s stand by changing the words “physician-assisted suicide” to “physician-assisted death” and changing “unethical and must be condemned” to “physicians should not engage” in such activities.

Another irritation for the Canadian delegation at Reykjavik must surely have been a long article in the latest issue of the WMA’s official journal by several Canadian physicians entitled “Euthanasia in Canada: a Cautionary Tale”. These dissidents argued that “The introduction of euthanasia in Canada has caused doubt, conflict and crisis” and that a change in WMA policy would be “ill-advised”.

The CMA’s draft Code of Ethics and Professionalism does not even mention euthanasia, but there is substantial opposition to it amongst Canadian doctors, as the article shows.

“What does the resignation of the CMA from the WMA teach us?” asks Mark Komrad, an American associate member of the WMA, in the Psychiatric Times.  "Doctors killing patients is OK. But copying small parts of speeches is real evil, so evil in fact that it merits leaving the international community of Medicine."



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

Will the male of the species go the way of the dodo?

Are men becoming obsolete? This dire news (or possibly good news in some circles) has been voiced many times as stem cell research unfolded over the past 20 years. Now there is an experiment to give it some credibility.

From two mothers, Chinese researchers have bred healthy mice which went on to have normal pups of their own. They achieved this feat by altering stem cells from a female mouse and injecting them into the eggs of another. Of 210 embryos, 29 survived.

Mice pups from two fathers were also born using a similar but more complex approach, but these only survived for a couple of days.

The research was published in Cell Stem Cell by researchers from the Chinese Academy of Sciences.

While some reptiles, amphibians, and fish can reproduce with one parent of the same sex, it is challenging for mammals with the help of fertilization technology. In mammals, because certain maternal or paternal genes are shut off during germline development by a mechanism called genomic imprinting, offspring that don't receive genetic material from both a mother and a father might experience developmental abnormalities or might not be viable. By deleting these imprinted genes from immature eggs, researchers have produced bimaternal mice--mice with two mothers--in the past. "However, the generated mice still showed defective features, and the method itself is very impractical and hard to use," says co-senior author Qi Zhou.

To produce their healthy bimaternal mice, the researchers used haploid embryonic stem cells (ESCs), which contain half the normal number of chromosomes and DNA from only one parent and which the researchers believe were the key to their success. The researchers created the mice with two mothers by deleting three imprinting regions of the genome from haploid ESCs containing a female parent's DNA and injected them into eggs from another female mouse. They produced 29 live mice from 210 embryos. The mice were normal, lived to adulthood, and had babies of their own.

One advantage of using haploid ESCs is that even before the problematic genes are knocked out, they contain less of the imprinting programming that ultimately causes maternal- or paternal-specific genes to be expressed. "We found in this study that haploid ESCs were more similar to primordial germ cells, the precursors of eggs and sperm. The genomic imprinting that's found in gametes was 'erased,'" says Hu.

Twelve live, full-term mice with two genetic fathers were produced using a similar but more complicated procedure. Haploid ESCs containing only a male parent's DNA were modified to delete seven key imprinted regions. The edited haploid ESCs were then injected--along with sperm from another male mouse--into an egg cell that had its nucleus, and therefore its female genetic material, removed. This created an embryo containing only genomic DNA from the two male parents. These embryos were transferred along with placental material to surrogate mothers, who carried them to term. These pups survived 48 hours after birth, but the researchers are planning to improve the process so that the bipaternal mice live to adulthood.

"This research shows us what's possible," he Li. "We saw that the defects in bimaternal mice can be eliminated and that bipaternal reproduction barriers in mammals can also be crossed through imprinting modification. We also revealed some of the most important imprinted regions that hinder the development of mice with same sex parents, which are also interesting for studying genomic imprinting and animal cloning."

Australian IVF expert Robert Norman commented, “The concept is intriguing for human reproduction, particularly for same-sex couples but there are far too many uncertainties at present to attempt such an approach for many years to come.

“The first challenge will be to make babies from artificially derived eggs and sperm from male and female couples, an exercise that is increasingly important for infertile men and women who have no functioning gametes of their own. No ethical permission has been given anywhere to attempt to produce live offspring although embryos have been produced experimentally with no transfer to the uterus.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

Genetic privacy eroding fast with growth of ancestry databases

Back in April came the stunning news that a 30-year-old cold case may have been solved in California using “forensic geneology”. A man believed to be the Golden State Killer, who was responsible for at least 12 murders and more than 50 rapes between 1976 and 1986, was arrested after investigators used publicly available ancestry databases to track him down. His own profile had not been posted, but profiles of some of his relatives had been. 

As a statistical geneticist has noted: “You are a beacon who illuminates 300 people around you.”

From April to August, the use of the technique has exploded. More than a dozen cases have been solved, even though a number of bioethicists expressed serious reservations about the possibility of invasion of genetic privacy.

But two papers published this week in Science and Cell suggest that the technique will become much more powerful very quickly. The team responsible for the paper in Science estimated that at the moment about 60% of the searches for individuals of European-descent will result in a third cousin or closer match, which can allow their identification using demographic identifiers.” But it will become even more accurate. They add: “Moreover, the technique could implicate nearly any US-individual of European-descent in the near future.”

They also demonstrate that it is possible to identify the participants in a sequencing project if the data is publicly available. 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

Walmart wants to know your heart rate and temperature

About 324 million people live in the United States. About 140 million of them visit Walmart in person or online every week, many of them pushing shopping trolleys. Is there an opportunity for gathering Big Data here?

Probably. The retail giant has applied for a patent which can track a shopper’s heart rate, temperature, grip strength and walking speed through the handle of the trolley. The patent, published in August, is called a "System and Method for a Biometric Feedback Cart Handle".

Walmart intends to us the data it reaps to care for the health of its customers, according to the patent. the internet-connected trolleys would alert employees when a customer falls sick. Tech blog CBInsights says the device will not track personal data:

Without extracting any personally identifiable data, information collected could be used to assess trends across multiple customers in real-time: Clusters of alerts, such as several shoppers appearing to need assistance at one time, could be used to anticipate problems like arguments among customers or broken items in an aisle.

However, it’s not difficult to imagine that the information could be used for marketing purposes. A blogger at aol.com commented:

Internet retailers already excel at targeting us for products they know we want to buy based on our online shopping behavior. It's not so easy to gather data about your preferences while you shop in brick and mortar stores.

But what if Walmart could see if your heart rate increases when you pass a new display? What if they could see it drops when you walk by another? This technology would essentially monitor how customers are feeling while they shop. Walmart could then use that data to optimize the design of their stores for ultimate feel-good vibes. Or to entice people to stay in their stores for a few minutes longer, which is the tried-and-true way to get people to spend more.

Though the creepy shopping cart handle doesn't exist yet, it's not hard to imagine it quickly coming to fruition if the patent is approved. Similar technology already exists on treadmills, which have sensors in handles that can gather your heart rate.

Is our privacy vanishing?



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

New journal to explore what comes after Humanity 1.0

This has just come to our attention: a journal launched last year on trans and post-humanism. The Journal of Posthuman Studies is based at the Ewha Institute for the Humanities, a Korean “research institute to overcome the crisis of humanities” and published by the Penn State University Press. Its editor-in-chief is Stefan Lorenz Sorgner, a German philosopher at John Cabot University in Rome.   

In an introductory note, Sorgner explains the difference between posthumanism and transhumanism, two terms which are probably regarded as synonymous by outsiders.

The two movements differ significantly in language, style, and methodology. Transhumanists are linear thinkers, employ technical vocabulary, and have a scientific methodology, while posthumanists embrace a nonlinear way of thinking, use metaphors, and have a hermeneutic methodology.

The two movements also have radically different pedigrees. Transhumanism is rooted in Darwin’s evolutionary theory, Mill’s utilitarianism, and Anglo-American analytic applied ethics discourses.

Posthumanism, on the other hand, is more closely related to continental philosophy, literary theory, and cultural studies and affirms narrative approaches to ethical issues. Transhumanists have a particular strength in their analysis of specific applied ethical questions, whereas posthumanists have developed a complex philosophical methodology for approaching wider cultural issues.

The latest issue includes articles on “Moderate Transhumanism and Compassion”, “The Case for Technological Mysticism”, and “Ex Machina and the Fate of Posthuman Masculinity: The Technical Death of Man”.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

Academics continue to spar over conscientious objection

Conscientious objection has been a subject of vigorous debate in medical ethics in recent years. Two major journals have published themed issues on the topic, and in 2016 a group of influential bioethicists published a consensus statement arguing for greater restrictions on conscientious objection in the UK and other Western liberal democracies.

Opponents of conscientious objection argue that doctors’ primary duties are to their patients and not to their own personal conscience, and that, where a conflict should occur between a clinicians values and that of their patients, the wishes of the patient should normally take priority.

There have even been calls for a military-style tribunal in which conscientious objectors would be required to explain, to the satisfaction of their peers, why they should be exempted from performing procedures that are otherwise deemed “safe, legal and effective medical treatment”.

Yet the academic clamour against conscience protections has not gone without dissent. Earlier this year philosopher David S. Oderberg of the University of Reading published a Declaration in Support of Conscientious Objection in Health Care, in which he argued that liberal democracies should allow health care professionals with sincere, deeply held conscientious objections “to exercise their professional judgment and to allow their consciences to inform that judgment”.

The declaration states:

[In] a liberal, democratic society the state may not play favourites by choosing one system of morality to trump all others no matter what objections of conscience are made against it. Conscientious objectors must not be silenced or marginalised merely because of their unwillingness to participate in activities to which they object.

Oderberg’s declaration has already received several hundred signatures from professionals working in healthcare and related disciplines.

This week, Oxford bioethicists Alberto Giubilini and Julian Savulescu published a lengthy response to professor Oderberg’s declaration, arguing that liberal appeals to tolerance are predicated on “moral relativism”, and that we should instead be engaging with substantive questions about the morality of particular medical procedures.

“We should stop focussing on the value of conscience and of freedom of conscience and shift our attention to substantial moral issues to determine what exactly should and should not fall within the proper scope of medicine (or indeed of any other profession)”.


This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

NHS terminates contracts over waste disposal scandal

The National Health Service has terminated several contracts with waste disposal provider Health Environmental Services (HES) after evidence emerged that hundreds of tonnes of hospital waste, including human body parts, had been allowed to accumulate in the company’s facilities.

HES controls approximately 20 percent of the waste disposal market in the UK, and has facilities across the United Kingdom.

According to NHS England documents obtained by the Health Service Journal, large amounts of various forms of human waste, including amputated limbs, as well as infectious liquids, cytotoxic waste produced during cancer treatment and dangerous pharmaceutical waste, have built up at HES’s five sites in England.

For example, there were 350 tonnes of waste in September at its waste disposal plant in Normanton, West Yorkshire, five times more than HES’s permitted level, the Health Service Journal reported.

Fifteen NHS Trusts in England have subsequently served notices to HES to terminate their contracts. However, HES continues to collect waste for more than 30 English hospitals and also carries out work across Scotland.

In a written statement to parliament, health minister Stephen Barclay said that new arrangements had been made with the outsourcing firm Mitie to replace the service provided by HES. “The primary concern was that too much waste was being held in a number of waste storage and treatment sites by [the] contractor”, Barclay said.

HES managing director Garry Pettigrew has denied all claims of mismanagement, telling the BBC in an interview that problems were caused by a shortage of incinerators rather than the company’s actions. He said that his company had been “vilified for providing an excellent service”.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

Capital punishment abolished in Washington State

Washington State’s Supreme Court ruled on Thursday that capital punishment is “unconstitutional” and “racially biased”, in a decision that makes Washington the 20th US state where courts or legislatures have overturned or abolished the death penalty.

A five-member majority of the court did not say that executing people who commit heinous crimes is inherently wrong, but said evidence showed that death sentences had been “imposed in an arbitrary and racially biased manner”.

“We are confident that the association between race and the death penalty is not attributed to random chance,” the majority’s decision said.

In its decision, the court relied heavily on a study by University of Washington researchers that found that jurors are more than four times more likely to impose a death sentence if the defendant is black.

The ruling comes in response to an appeal brought by Allen Eugene Gregory, a black man who was convicted of the rape, robbery and murder of a waitress named Geneine Harshfield in 1996. Mr. Gregory, 46, was sentenced to death in 2001.

After the decision, Gregory’s attorneys, Neil Fox and Lila Silverstein, both issued statements praising the court’s move. Fox said “Washington now joins the overwhelming majority of the world’s democracies in its respect for human life,” while Silverstein said the justices “properly ruled the Washington Constitution does not tolerate such an unfair system.”

The court commuted the sentences of eight men on death row to life imprisonment, while leaving open the possibility that the Legislature may reinstate the death penalty through a “carefully worded statute”. Yet Washington’s governor Jay Inslee said in a news conference that he would veto any bill that attempted to bring back the death penalty or to fix the flaws outlined by the justices.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
13
 

MSF ordered off Nauru

The international medical aid organisation Medecins Sans Frontieres has been abruptly ordered off the Pacific island of Nauru where it was providing mental health services to asylum seekers detained by Australian authorities.

Nauru is home to a large Australian refugee processing centre that has been the centre of intense political scrutiny in recent years, with the indefinite detention of families and reports of substandard facilities leading Amnesty International to label it a “horror”.

The Nauruan government informed the MSF representatives last Friday that their services were no longer required, giving them just 24 hours to vacate the premises. MSF says that it is “deeply concerned” for the wellbeing of detainees in the facility, and called the decision to terminate the contract “grossly irresponsible”.

On Thursday the organisation issued a forceful statement calling for all refugees to be immediately evacuated from the island. “[There is] nothing humanitarian about saving people from sea only to leave them in an open-air prison”, the organisation said.

At least 78 patients on Nauru had considered or attempted suicide or self harm, according to MSF representatives.

The Nauruan government hit back on Friday, arguing that MSF had come to Nauru under the guise of health care only to engage in “political activism”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

Dutch man may have fathered 1000 children

Amsterdam street scene 

Ivo van Halen, a 34-year-old Dutch IT consultant, is compiling a very long Christmas card list. After learning that he was donor-conceived five years ago, he has been looking for his half-siblings on DNA testing sites on the internet. So far he has identified 57 of them in the Netherlands, plus his biological father. But a government agency for donor-conceived people believes that there could be as many as 1000 of them.

Mr van Halen’s sperm donor father donated regularly at three clinics for 20 years and some of the sperm was exported to other European countries.  

He told The Times (London) that he had met a number of his half-siblings and it turned out that some of them had grown up nearby. “Some of the others had known each other before they found out they were related and had almost dated,” he said. “That’s one reason this sort of knowledge is so important.”

If super sperm donor dad really did have 1000 offspring, this would make him the world’s most prolific father. An Austrian doctor in London, Bertold Wiesner, used to hold the record. He is believed to have artificially inseminated up to 600 women at his fertility clinic after World War II.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

Should HIV+ people be allowed to donate organs?

A medical team at the University of the Witwatersrand in South Africa has performed an ethically controversial liver transplant from a HIV-positive donor to a HIV-negative patient.

The donor was the 27-year-old mother and the recipient her infant child.

She had insisted on being considered as a donor, but doctors were initially reluctant because international transplant guidelines clearly exclude HIV-positive donors. However, no other donors were available and the child was near death. After extensive consultation the transplant went ahead; the child appears to be healthy and HIV-negative. (Click here for the published case study.)

Writing in The Conversation, two doctors and a bioethicist explain the reasons for their decision.

We took great care to consult widely before doing the transplant. This included speaking to the members of the transplant team, bioethicists, lawyers, experts in the field of HIV medicine and Wits University’s Medical Ethics Committee. The committee’s function is - among other things - to protect patients in medical research, and to make sure doctors are doing procedures for the correct reasons.

It was clear that a transplant was in the child’s best interests. The bigger ethical question was whether it was right to deny the mother the opportunity to save her child’s life. A fundamental principle of ethics is to treat people fairly. People with HIV should have the same health care options as everyone else.

We, along with the Ethics Committee, agreed that as long as the child’s parents understood that there was a risk the child could acquire HIV, it was acceptable to go ahead with the transplant.

Then, to ensure that the child’s parents were properly informed and in the best position to make a decision, we used an independent donor advocate ...

This operation has shown that doctors can do this type of transplant, and that outcomes for the HIV positive donor and the recipient can be good. It has also created a unique opportunity for scientists at Wits to study HIV transmission under very controlled circumstances.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

Canadians and Dutch fail to shift World Medical Association opposition to euthanasia

A view of Reykjavik

The pro-euthanasia Canadian Medical Association (CMA) and the Dutch Medical Association(KNMG) have failed in their bid to change the position of the World Medical Association. The CMA and the KNMG prepared a resolution at this year’s WMA meeting in Reykjavik, the capital of Iceland, but withdrew it for lack of support, according to a report from the Euthanasia Prevention Coalition.

The August issue of the WMA’s World Medical Journal contained reports from several regions where doctors had debated end-of-life care. In Brazil the local association declared that “if the doctor is prepared not only to cure but also to kill, the ethics of medical practice and the trust that the patient must have in his doctor will be very battered”. All of the medical associations in the Asia-Pacific and Israel (including Australia and New Zealand, Japan and China) were opposed to euthanasia. African medical associations were “unanimously opposed to euthanasia and physician assisted suicide in any form”.

The German Medical Association, the WMA and the Vatican also organised a symposium at which a majority of participants rejected euthanasia “as being diametrically opposed to the ethical principles of medicine and expressed concern that they could lead to misuse or abuse”.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

If you cannot remember a crime, should you be executed for it?

On April 18, 1985 Vernon Madison shot an Alabama police office in the back of the head at point blank range. He was tried three times for the crime and sentenced to death in 1994. He has been living on death row ever since. He is now 68 years old.

There is no doubt that he committed the crime. But his defence lawyers contend that after suffering two strokes in 2015 and 2016 he cannot remember it. Should he be executed?

His case has come before the US Supreme Court.

The Alabama Attorney General's office questions whether his amnesia is genuine and argues that Madison’s execution “will serve as an example to others that the intentional murder of a police officer will be punished”. It also contends that a prisoner with amnesia “is no less subject to deterrence than an inmate who remembers the crime that put him in prison.” 

“A failure to recall committing a crime is distinct from a failure to understand why one is being punished for a crime. An inmate’s personal recollection of the crime is irrelevant to whether the inmate shares the community’s understanding of the crime, has a moral responsibility for committing the crime, or understands why he is being punished for the crime.”

The Equal Justice Initiative, which is defending Madison, says that his health puts him “into the category of prisoners for whom an execution would serve no retributive or deterrent purpose.” They claim that the strokes have left Madison blind, with “vascular dementia, cognitive deficits, severe memory loss, and brain damage.” He has difficulty moving and speaking.

“He frequently urinates on himself and complains that no one will let him out to use the bathroom when there is a toilet inches away from his bed,” EJI wrote in a brief for the court. “His memory is so impaired that he can no longer recite the alphabet or do a simple math problem. He is unable to remember that his mother and brother are deceased and cannot identify the prison warden or officers who have been guarding him for years.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

UK govt bodies clash over transgender fertility treatment

A government human rights agency in the UK plans to sue the government health service for not helping transgender patients to transition.

The Equality and Human Rights Commission claims that the National Health Service is obliged to provide fertility services for transgender patients with gender dysphoria, a treatment that normally results in a loss of fertility. If their sperm or eggs are frozen and stored, it is still possible for them to have children later in life.

But since many of these patients are teenagers, they cannot afford this. The EHRC claims that this constitutes discrimination against transgenders. The NHS responds that it is not responsible for providing fertility services to all patients.

Rebecca Hilsenrath, chief executive of the EHRC, says that “We are proceeding with our judicial review claim and will remain in discussions with NHS England about the need to ensure the transgender community can access health services free from discrimination, and that individuals do not have to choose between treatment for gender dysphoria and the chance to start a family.”

The NHS may be concerned about the potential for the cost of treating transgender patients to spiral out of control. The minister for women and equalities, Penny Mordaunt, has reportedly asked for an explanation of why the number of girls referred for transitioning has risen from 40 to 1,806 -- 4,400% -- over the past ten years.

If the NHS is forced to provide fertility treatment for them, it may be forced to reduce the level of service for conventional fertility patients – who are currently complaining bitterly about the low levels of service. A spokeswoman told the media: “NHS England has responded in detail to the EHRC explaining why we believe their request is both misjudged and potentially unfair to NHS patients.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
06
 

Documentary makes powerful plea for open access publishing

Nothing warms the cockles of the heart like righteous outrage, so quite a few readers of BioEdge will be interested in Paywall, a documentary on academic publishing. Its argument is simple. Knowledge should be free. Academic journals aren’t free. Therefore the system is broken. Why does a US$25.2 billion industry coast along with profit margins of about 30% -- when an “evil corporation” like Walmart only has a profit margin of 3%? The world needs open access publishing!

The attack on the current model may be unfair, but you can’t say that it isn’t provocative and fascinating. Paywall: the business of scholarship is well worth watching – if you can organise a screening, because it costs individuals US$39.95 to download.

Here’s what The Lancet (whose publisher, Elsevier, is one of the main villains targeted by director Jason Schmitt) had to say about Paywall:

The film could ... have an impact on academics, many of whom still do not understand how profitable publishers are and how academic institutions could—if they worked together—make science available to all and retrieve the profits for more research.

More openness in science, the talking heads make clear, means better scholarship, more innovation, higher quality, more equality, and a better chance of solving fundamental problems like climate change, poverty, and the pushing back of disease. That publishers are making huge profits from restricting access to research is not a marginal problem, says István Rév, a professor of history and political science from Budapest, it's holding back the solution to fundamental problems. Indeed, he adds, the profits of publishers are one of the causes of rapidly rising tuition fees. Some colleges are having to close in part because of the continuing high cost of journals. “It's a catastrophe”, says Peter Suber, director of the Harvard Office for Scholarly Communication and director of the Harvard Open Access Project.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
05
 

Australian man convicted of counselling his wife to suicide

An Australian man has been found guilty of “counselling” his wife to commit suicide -- a conviction that appears to have no precedent in Australia or internationally.

Graham Morant, 69, was convicted by a Queensland Supreme Court jury on Tuesday of both counselling and aiding his 56-year-old wife Judy to take her own life. Mrs Morant suffered from chronic pain, but was not terminally ill.

The court hear that Mr Morant stood to gain A$1.4 million in life insurance from his wife’s death.

Judy Morant was found dead alongside a petrol generator in her car on November 30, 2014, and a note was found nearby saying “please don’t resuscitate me”. A week earlier Mrs Morant had told a close friend that she intended to commit suicide, and that her husband had a agreed to help her.

The court heard that Mr Morant, a devout Christian, had told his wife he wanted to use the life insurance payout to build a religious commune in the Gold Coast hinterland.

Initially Mr Morant denied any involvement in his wife’s suicide, though as police produced more evidence of his complicity his story began to change. “Slowly, very slowly, over the course of the next hour the accused explained he did assist his wife in her suicide,” Crown prosecutor Michael Lebanese told the court.

Prof Ben White, a law expert at Queensland University of Technology, told the BBC that assisted suicide-related convictions of any kind were “very rare” in Australia.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
05
 

Japan set to allow gene editing of human embryos

Japan is set to allow the gene editing of human embryos, with an expert panel representing the country’s health and science ministries releasing new guidelines late last month.

Although the country regulates the use of human embryos for research, there have been no specific guidelines on using tools such as CRISPR–Cas9 to make precise modifications in their DNA until now.

The new guidelines will allow for research to be carried out on early-stage embryos, with scientists hoping to gain insight into early human development and perhaps eventually fix genetic mutations that cause inherited diseases.

Yet ethicists are concerned that the technique could be used to alter the embryos for non-medical reasons. While the guidelines would restrict the manipulation of human embryos for reproduction, they are not legally binding.

Gene editing is still banned in most countries, though countries such as the UK have recently relaxed their restrictions.

Tetsuya Ishii, a bioethicist at Hokkaido University in Sapporo, says that before the draft guidelines were issued, Japan’s position on gene editing in human embryos was neutral. The proposal now encourages this kind of research, he told Nature.

The guidelines are open for public comment and will likely be implemented in the first half of next year.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
October
05
 

Canada: the latest surrogacy hotspot?

Canada may have become a hotspot for international surrogacy, with data suggesting that almost half of intended parents in some provinces live abroad.

Writing in The Globe and Mail, journalist Alison Motluck recounts how loopholes in Canada’s surrogacy law, and increasing restrictions on surrogacy in other countries, have contributed to an apparent spike in foreign intending parents having children via Canadian surrogates.

Precise figures are not publicly available and some provinces do not keep records of parents’ residency. Yet legal scholar Pamela White from the University of Kent recently obtained data from the government of British Columbia of births via surrogacy in the province in 2016 to 2017. According to White, almost half of the babies born to Canadian surrogates in the province were for intended parents who lived outside the country (45 of the 102 babies, or 44 per cent).

In a paper presented at the annual meeting of the Canadian Fertility & Andrology Society last month, University of Manitoba legal scholar Karen Bubsy noted that a loophole in Canadian legislation allows for surrogates to be paid provided that the money exchanges hands outside of the country. And unlike Russia and the Ukraine, Canada does not restrict surrogacy on the basis of marital status or sexual orientation.

Canada restricts payments for local sperm and eggs, yet prospective parents can purchase gametes for surrogacy in US states bordering Canada.

Even in light of the loopholes in legislation, there have been calls for the country’s official ban on commercial surrogacy to be abandoned. A bill is currently before the House of Commons that would amend the Assisted Human Reproduction Act to allow payment for surrogacy services.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

What are the ethical complications of a womb transplant?

In 2014, the first child to have been gestated in a donated uterus was born in Sweden. Although research into uterus transplantation is still in an early phase, many see the donations as a success. But are there ethical complications as well?

Thus far, trials around the world have resulted in the birth of ten children who were gestated in a transplanted uterus; eight of them in Sweden.

"If uterus transplantation is to take the step from trials to becoming a reality in the Swedish healthcare system, there must first be an ethical debate on the procedure," says Lisa Guntram, of Linköping University.

In 2016 a Swedish white paper on altruistic surrogacy argued that altruistic surrogacy should not be permitted. With this as a starting point, Guntram analysed the assumption that introducing uterus transplantation would be less problematic than altruistic surrogacy. Her research was conducted together with Nicola Jane Williams, of Lancaster University in the UK, and the results of the study have been produced in the journal Bioethics.

Some of the issues include:

1.That the transplant can threaten the autonomy of the donor, and subject her to pressure. In the Swedish trials, the donated uteruses come from a relative, in most cases the mother of the woman who is involuntarily childless. Consequently, some close relatives of involuntarily childless people can feel forced to donate, or be actively subject to external pressure.

2.That the intervention can lead to exploitation of women's bodies. There is a risk uteruses might become yet another organ, such as kidneys, on the black market.

3.That the research on the physical and psychological risks facing the child is inadequate. As in surrogacy contexts, little is known of the consequences of uterus transplantation for the child, because so few children have been born as a result of such a transplantation.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

Forget about those split infinitives: editors can have heavy moral responsibilities

Cast study 1: A recent Danish study found that antibiotics could be useful for treating the symptoms of a widespread chronic disease. But publishing the study was difficult. At least one reviewer noted that the study could lead to an increased use of antibiotics and thus ultimately adding to the problem of microbial multi-resistance.

Case study 2: The BMJ recently published an article suggesting that side-effects of statins may outweigh health benefits in patients at low and intermediate risk of cardiovascular disease. The article sparked intense debate, even in the mass media. As a result it is estimated that as many as 200, 000 people in the UK have stopped taking statins, potentially leading to 2000 cardiovascular events.

Should the results of the research have been published?

An article in the Journal of Medical Ethics argues that the consequences of making some medical research public are too negative to allow publication. Editors of medical journals have a moral responsibility for the harm that is caused, contends Thomas Ploug, of Aalborg University Copenhagen.

Editors can do some things to mitigate harm, Ploug points out:

They may require authors to explicitly describe and address the potential harmful effects and the need for regulation, and they may ask authors to revise unnecessarily strong, one-sided, unbalanced statements that are likely to be picked up and communicated uncritically by the mass media.

Editors may also influence the context of publications by inviting reviewer or open peer comments or by an editorial comment. They may choose to include such research in special thematic issues with a special emphasis on the wider effects of publishing this research. They may highlight the sensitive issues in their advertising on social media and in potential press releases to the mass media. They could even ask a panel of healthcare organisations and relevant decision-makers to comment in the journal on the potential harmful effects and the need for regulation.

But perhaps the best way of dealing with this issue is to develop a code of publication ethics which would “Acknowledge moral responsibility for the effects of publishing; Define benefits and harms of publishing, [and] Specify a range of actions an editor may take.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

Editor bans religious arguments from bioethics journal

The editor of Developing World Bioethics, Udo Schüklenk, has decided to ban from his journal any articles whose assumptions are religious. “After much thought we have decided to more significantly limit exclusively religious contributions.”

Why? It’s not out of an anti-religious bias but because “Religion based arguments are, by definition, arguments that do not fall into the category of public‐reason based arguments.”

They rely on premises involving the existence of unobservable supernatural powers giving us direction in terms of how we must live our lives. Typically their guidance is provided in religious documents the content of which is credited to said unobservable supernatural powers...

Schuklenk makes an interesting summary of the argument for secularism:

Secular societies cannot possibly function as arbiters of the truth or otherwise of their diverse citizenries religious beliefs. The reasons for this are well‐known and reflected in myriad highest courts’ judgments delivered across liberal societies’ jurisdictions. As a consequence of this, while debates in such societies will countenance in varied ways religious arguments, ultimately only views that can be defended within the analytical frameworks of public‐reason based arguments can succeed in secular societies.

Developing World Bioethics is a companion journal to Bioethics, of which Schüklenk is a co-editor.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

Inquiry into NHS blood scandal begins

A public inquiry has begun in the UK into the use of contaminated blood for patients with haemophilia and other bleeding disorders, after revelations that approximately 5000 patients were infected with HIV and hepatitis viruses from the 1970s to 1990s.

The enquiry comes after decades of campaigning from victims of contaminated blood transfusions and allegations of widespread cover-up by politicians and NHS officials.

In 1970s, new blood clotting products -- Factor VIII and less commonly, Factor IX -- were introduced in the UK and proclaimed as “wonder drugs” that would not only save lives but also enable haemophiliacs to lead normal lives. Yet the products were made from the pooled plasma from tens of thousands of donors, some of which was contaminated. Blood was being imported from overseas as a result of domestic shortage, and some of the blood products were from prison inmates and others carrying deadly viruses. It was only in the mid-1980s that the products started to be heat-treated to kill pathogens.

Sixty-one-year-old Steve Dymond, who received contaminated blood injection in the mid 1980s, said he had been  "betrayed and lied to" by government, health professionals and drug companies trying to avoid responsibility.

Those leading the inquiry pledged to investigate claims of a cover up thorough and hold anyone found to be responsible to account "without fear of favour".

Previous inquiries have lacked powers to be able to force witnesses to come and give evidence, undermining their ability to establish whether the risks were known about but concealed from patients and previous investigations. Jenni Richards QC, counsel to the inquiry, said she expected the inquiry to last about 15 months once it starts taking evidence in April next year. It is likely to involve the questioning of former government ministers, she said.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

Trump administration to review human fetal tissue research

The US Department of Health and Human Services (HHS) has announced a comprehensive review of all research projects involving the use of human fetal tissue, following extensive lobbying by pro-life organisations and Republican politicians.

In a statement released Monday, HHS said that it was “conducting an audit of all acquisitions involving human fetal tissue to ensure conformity with procurement and human fetal tissue research laws and regulations”. HHS also said it was “continuing to review whether adequate alternatives exist to the use of human fetal tissue in HHS funded research and will ensure that efforts to develop such alternatives are funded and accelerated”.

The department recently terminated a contract with Californian firm Advanced Bioscience Resources (ABR) after it found that the contract did not include “the appropriate protections applicable to fetal tissue research or met all other procurement requirements”. ABR was supplying fetal tissue to FDA to create so-called humanized mice for drug testing.

Last week, 85 House Republicans signed a letter to FDA Commissioner Scott Gottlieb, saying they were “deeply concerned” about the ABR contract. The letter said that the non-profit group had been part of a pair of congressional inquiries in the past two years into fetal tissue procurement and that House investigators had “uncovered evidence that ABR may have violated” longtime federal and state laws that forbid the buying and selling of human fetal tissue.

Two weeks ago, leaders of nearly four dozen anti-abortion and faith-based groups, including the Susan B. Anthony List and the Family Research Council, sent a letter to HHS Secretary Alex Azar complaining about the ABR contract. They argued that “fetal organ procurement is highly unethical and potentially illegal” and called on the government to “find ethical alternatives as soon as possible”.

Some bioethicists have criticised the HHS announcement. Alta Charo, a professor of law and bioethics at the University of Wisconsin in Madison, said: “My instinct is that this is driven by politics, and is part of the overall effort to stigmatize and eventually criminalize abortion”.

Yet some suggest the review does not go far enough. “What's needed is wholesale reform across the breadth of HHS”, David Prentice, vice president and research director for the Charlotte Lozier Institute, told NPR. “Use of fetal tissue is antiquated research, and [HHS Secretary Alex] Azar should redirect those funds to modern science and better alternatives, including adult stem cells”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

India’s Supreme Court rules on biometric ID system

India’s Supreme Court has ruled to significantly limit the use of the country’s new “Aadhaar” biometric ID system.

A panel of five judges ruled 4-1 to approve the use of the program for government welfare and tax collection programs, including the distribution of food rations and other government benefits and the collection of income taxes. Yet it thwarted government plans to require the digital ID for other purposes, including verifying the identity of students taking exams. The Court also outlined new protections meant to prevent the government from misusing the data in the name of national security.

The Aadhaar system involves the collection of fingerprints and a retinal scan from Indian citizens, with the data being uploaded to a central register and linked to an individual ID number. The ID number is required for a range of public and private services, including phones and bank accounts. Poor residents use it to obtain food rations and older persons require it to receive a pension.

Writing for the court’s majority, Justice A.K. Sikri said that, with the stipulated restrictions, the Aadhaar Act “struck a fair balance between the right of privacy of the individual with right to life of the same individual as a beneficiary.”

Justice D.Y. Chandrachud, who wrote the lead opinion last year in a related case that was the first to establish a fundamental right to privacy for Indians, wrote a dissenting opinion arguing that the Aadhaar Act was unconstitutional.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
30
 

French ethics committee opposes euthanasia, endorses IVF for all women

A peak ethics authority in France has recommended that the prohibition on assisted suicide in the country be retained. The National Consultative Ethics Committee (CCNE) released a report on Tuesday addressing a range of contentious bioethical issues currently under review by the government, including access to assisted reproductive services, egg freezing, gene sequencing, and end-of-life law.

The committee’s report, which comes in the wake of an extensive period of public consultation, states that “no societal consensus” on euthanasia has been reached. It instead recommends that clinicians and the public be educated on extant legislation surrounding palliative sedation, which would ensure a “serene and peaceful” end to life for terminally ill patients with unbearable pain. The report also recommends the provision of palliative care to patients as soon as they are diagnosed with an incurable illness.

The report addresses the question of the provision of assisted reproductive services for single women and women in same sex relationships. It states that all women should have access to donor sperm should they wish to conceive a child. The “suffering” of infertility, even where this is not the result of a biological impediment, “must be taken into account”, the committee said.

The French government stated last year that it intended to change the law to allow all women to conceive via IVF.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
22
 

Canada laying groundwork for child euthanasia

Euthanasia, or “medical aid in dying”, was authorised by Canada’s Supreme Court in June 2016. It was a controversial decision and the controversy is far from over. Three issues were left hanging: euthanasia for “mature minors”, euthanasia for people with mental illness, and advance directives for euthanasia. The government asked the Council of Canadian Academies to produce a report on these issues by December this year.

Euthanasia for mature minors is a particularly sticky issue. In the Journal of Medical Ethics, several Canadian paediatricians and bioethicists construct an argument supporting it.

First of all, they frame euthanasia (MAID) a part of a continuum of palliative care.

it is wrong to force a person to live in circumstances of unendurable and irremediable suffering and ... the wishes of capable patients should be respected within legal limits, especially in such an intimate matter as how they choose to die. Persons, in other words, have a right to life, not a duty to live ...

If MAID is essentially a normal medical procedure, it follows that there is no need for “special procedures for managing communication, confidentiality and capacity assessment”.

One consequence of this is that doctors should be proactive in suggesting euthanasia to children for they have an obligation to inform patients of their healthcare options.

What about a young person’s capacity for consent? In Ontario, “young people can be and are found capable of making their own medical decisions, even when those decisions may result in their death”. This is not universally accepted in Canada, so it may be necessary to tweak the law.

How about the role of parents? What if a young person requests MAID but their parents object? The authors argue that if a young person is capable of making their own medical decisions, there is no reason why parents have to be informed. “If we regard MAID as practically and ethically equivalent to other medical decisions that result in the end of life, then confidentiality regarding MAID should be managed in this same way.”

How should hospitals manage their public relations? Permitting child euthanasia is sure to be extremely controversial so they need to reduce the social stigma. The authors propose HIV/AIDS as a model:

If we take the HIV model as our strategy for publicly messaging MAID, we would proceed by providing MAID in a matter-of-fact way that may, over time, reduce the social burden both on patients seeking this procedure and clinicians providing it.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Affirm transgender kids, says American Academy of Pediatrics

Transgender children should be affirmed by their doctors, their families and society, says the American Academy of Pediatrics in an official policy statement.

The AAP’s policy is to validate all “gender identities” in children without questioning them. It ignores the possibility of children being temporarily or pathologically confused. However, it acknowledges at a number of points in the report that the scientific evidence for gender affirmation is scant. It blames this, in part, on inadequate funding for research:

“Professional understanding of youth that identify as TGD is a rapidly evolving clinical field in which research on appropriate clinical management is limited by insufficient funding.”

The new policy makes a strong argument for a “gender-affirmative care model” whose main features are that:

  • “transgender identities and diverse gender expressions do not constitute a mental disorder;
  • “variations in gender identity and expression are normal aspects of human diversity, and binary definitions of gender do not always reflect emerging gender identities;
  • “gender identity evolves as an interplay of biology, development, socialization, and culture; and
  • “if a mental health issue exists, it most often stems from stigma and negative experiences rather than being intrinsic to the child.”

With respect to medical management the policy statement contends that it should be decided on a case by case basis, but without giving any age limits and without excluding surgical intervention for adolescents. “The available data reveal that pubertal suppression in children who identify as TGD generally leads to improved psychological functioning in adolescence and young adulthood.”

The statement is sure to be controversial. A former president of the AAP and also of another medical association, the American College of Pediatricians, Dr Joseph Zanga, wrote recently: 

Endorsing sex change for children as normal will inevitably lead more children to puberty-blocking drugs. This, in turn, virtually ensures they will "choose" a lifetime of toxic cross-sex hormones, and likely consider surgical mutilation of healthy body parts all for a condition that - in the vast majority of cases - would have resolved naturally by late adolescence.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

The digital smart pill is not a magical answer, say researchers

Enthusiasm for an emerging digital health tool, the smart pill, is on the rise but a paper in the American Journal of Bioethics cautions health care providers and policymakers to slow down when it comes to allowing this technology in patient care settings.

Smart pills, or digital pills, are prescription medications equipped with edible electronic sensors that send wireless messages to devices, like patches and smartphones or tablets, outside the body when they are ingested. The first of its kind, which is used to treat patients with schizophrenia, bipolar disorder and major depressive disorder, was approved for use in humans by the US Food and Drug Administration in 2017.

Some hope the technology will help patients and doctors track drug regimen compliance and increase patient adherence, which estimates show may save between US$100 and $300 billion annually in the US. Others have concerns about patient privacy, consent and data sharing.

Eric Swirsky, an expert in the legal and ethical issues related to health care technology, says that both groups have valid arguments but that neither is asking the right question.

"We need to know if smart pills are going to actually improve patients' lives, which is much more complicated than compliance or privacy," said Swirsky, of the University of Illinois at Chicago. "It is naive to think that this type of surveilled compliance with provider-recommended drug treatments will function like a magic pill. More likely, it will just challenge the ingenuity of patients."

Swirsky said there is simply no evidence yet to suggest smart pills benefit patients and that using the technology outside of clinical trials "flies in the face of the research we do currently have, which shows that patients benefit by receiving care from providers who can manage the many issues around adherence."

"Smart pills are a dangerous reduction of the provider-patient relationship and there is no shortcut to improving patient adherence, which happens in a larger framework of home, work and clinical environments, not to mention perceptions and emotions," Swirsky said. "This technology dumbs down an issue that is often very complex in the hopes of quickly solving an expensive medical challenge."

For example, the first FDA-approved smart pill is being used in patients with schizophrenia, who often suffer from paranoia about being surveilled and distrust of medication or care providers. Swirsky said the intent to improve medication adherence in this group of patients is understandable, given that many patients see remarkable benefits from consistent medication use, but it is arguably unethical considering their unique symptoms and vulnerabilities.

The researchers warn that smart pills should be evaluated based on their clinical efficacy against the standard of care drugs, like any other intervention, not based only on compliance or cost savings.

"Health information technology functions best when implemented in conjunction with doctors and patients in a collaborative manner," the researchers write. "With no magic pill to cure the ills of the modern doctor-patient relationship, patients would be better served by providers who seek a comprehensive understanding of adherence than those who employ technology they do not understand."



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Woman can use sperm donor without husband’s consent

A woman in the Australian state of Victoria does not need the consent of her husband for IVF treatment, according to a judgement by a justice of the Federal Court. The woman, known only as EHT18, is 45 and is desperate to have a child with her own eggs.

According to an article in The Guardian, she is currently married but she has been separated since late last year and claims that the marriage has irretrievably broken down. Under Australian law, divorce is granted only after 12 months of separation and under Victorian law the consent of a spouse is required for a IVF procedure.

But ENT18 says that every day is precious as her biological clock has nearly struck midnight. The prospect of pregnancy for women over 46 is very low. IVF with frozen eggs is less likely to be successful, as well. Therefore she needs to act as quickly as possible.

The woman has given an undertaking that she will have the eggs fertilised with the sperm of a donor, not her husband’s, that he will not be registered as the father and that he will not have parental responsibilities for the child.

Under Victoria’s Assisted Reproductive Treatment Act, “the welfare and interests of persons born or to be born as a result of treatment procedures are paramount”. But it was argued that this should not mean that the consent of a former partner should necessarily be required. In any case, if the husband did not give his consent, he would have no responsibility for the child.

Federal court Justice John Griffiths ordered that the woman could undergo IVF without her husband’s consent because the Assisted Reproductive Treatment Act discriminated against her on the basis of her marital status. He declared that part of the law “invalid and inoperable”.

“A separated woman should be able to make her own decisions about IVF treatment. It’s absurd to require her to seek the permission of her estranged husband when a sperm donor will be used,” said a spokewoman for ENT18’s lawyers. “This decision also paves the way for other Victorian women in similar circumstances to not have their former partner control their reproductive choices.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Where does palliative sedation become euthanasia?

A special issue of the journal Theoretical Medicine and Bioethics is devoted to the controversial issue of palliative sedation. As the editor, bioethicist Daniel Sulmasy, points out, palliative sedation has special relevance for Christians. For them, the relief of unnecessary suffering is a duty, but euthanasia is wrong. Identifying the right response to suffering at the end of life is often perplexing, especially since some doctors use palliative sedation as terminal sedation – rendering patients unconscious and withdrawing hydration and nutrition until they die.

Sulmasy says that the articles in the June issue bring to the topic “an almost unprecedented degree of clarity, precision, honesty, and ethical reflection” which is valuable not only for Christians but for anyone interested in medical ethics.

Palliative sedation involves several seemingly uncomplicated issues which begin to unravel as soon as they are subjected to some gentle probing. When does palliative become terminal? Is continuing unconsciousness a human good? While the authors have different perspectives on subtle points, Sulmasy says that they are united in distinguishing three kinds of palliative sedation.

Double effect sedation, in which sedation is a foreseen but unintended side effect of treating a specific symptom with a drug (or drugs). This is ethically acceptable and common in palliative care and hospice, especially as patients come close to death,

Parsimonious direct sedation, which can be ethically acceptable in rare cases in which one aims, parsimoniously, at depressing consciousness to treat a severe symptom such as anxiety or delirium but does not intend hastened death, even though death might be foreseeable. 

Sedation to unconsciousness and death, which is never justifiable as one should never aim at the total suppression of the consciousness of a human being unless one has demonstrated, under the conditions that justify Parsimonious Direct Sedation, that lesser levels of sedation have failed to relieve the patient’s symptom. Those who charge that this practice is a form of slow euthanasia are correct.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Would you pay to participate in a clinical trial?

Imagine this scenario. You are terminally ill with cancer when you hear about a clinical trial with a miracle drug. You make inquiries and discover that you can participate but it will cost you $10,000.

This is the controversial “pay to play” model for funding clinical trials. While it sounds completely unconventional, it is already being used in allied health fields like sleep clinics, physiotherapy, and weight management. A couple of years ago bioethicist Ezekiel Emanuel and colleagues argued that it should not be considered as a funding model in times of shrinking budgets. They believed that it would undermine the integrity of clinical research.

However, two New Zealand bioethicists contend in the Journal of Medical Ethics that “pay to play” funding could work if it were properly regulated. There are ethical issues – patients’ ability to give truly informed consent may be undermined by the “therapeutic misconception” and trying to please the patients may skew the objectivity of the research and so on. Mike King and Angela Ballantyne counter that there is no essential difference between public and private funding for research:

Nearly half of all global research is funded by for-profit companies and concerns about conflicts of interest, skewing of the research agenda, and potential undue influence on study design can arise here as well. This is bread-and-butter work for Institutional Review Boards/Research Ethics Committees.  Reviewers should reject studies if they are not confident that the study has been designed so as to deliver scientifically valid results, or if there is unacceptable risk of therapeutic misconception, or invalid informed consent. Just like standard research, some donor-funded research may fall below the acceptable standard owing to these issues.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Should all newborns receive genome sequencing?

As the cost of genome sequencing decreases, doctors are debating whether all newborns should be sequenced, facilitating a lifetime of personalized medical care.

A report from The Hastings Center, The Ethics of Sequencing Newborns: Recommendations and Reflections, examines the pros and cons. It concludes that while sequencing the genomes of some infants may sometimes be appropriate, genome-wide sequencing of all newborns should not be pursued at this time. Health professionals should tell parents not to use direct-to-consumer genetic sequencing to diagnose or screen their newborns.

"Genomics is a powerful tool, but the results it returns are still not fully understood and have not been proven to advance health outside of very specific clinical situations," says Josephine Johnston, director of research of The Hastings Center.

The recommendations include:

  • Targeted or genomic sequencing can be used by clinicians to assist in the diagnosis of a symptomatic newborn. Sequencing these newborns may end the search for a diagnosis, informing medical management.
  • Genome-wide sequencing should not be implemented as a universal, public health screening tool in newborns. Sequencing the entire genome may result in the return of genetic data of unknown or uncertain significance and may not yield actionable results. Results can generate unnecessary distress and require health resources for unneeded monitoring. And the cost of universal genome-wide sequencing would stretch the operating expenses of state-funded newborn screening programs, undermining the effectiveness of their operations.
  • Integrating targeted genome sequencing into newborn screening programs may be appropriate when it is the best way to identify a condition that meets existing screening criteria--it affects a newborn's health, programs are able to fund screening and follow-up care, and effective treatments are available. Targeted genome sequencing may also be appropriate to confirm a diagnosis and provide additional prognostic information after initial screening results.
  • Whole-genome or targeted sequencing should not be integrated into routine infant primary care. In healthy babies, genome sequencing would likely generate undue anxiety and require significant health resources for interpretation and follow-up.
  • Health professionals should recommend against parents seeking direct-to-consumer genome sequencing for either diagnosis or screening of their newborn. This conflicts with clinical and professional guidelines, which limit testing to clinical contexts and for conditions that manifest during childhood. Most testing services also lack sufficient consultation and follow-up to assure accurate interpretation of results.

"Sequencing the genome of every newborn could cause parents to worry needlessly about their healthy baby," says Koenig.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
21
 

Another step closer to legal abortion in Ireland

On Tuesday, Ireland’s president, Michael D. Higgins, signed into law legislation amending the Constitution to remove constitutional protection for the unborn, following May’s constitutional referendum. A couple of predictably ineffectual legal challenges had delayed this.

The way is now open for abortion legislation. Minister for Health Simon Harris says that the government will aim to enact a law by the beginning of 2019 at the latest.

Medical Council guidelines will reflect the new law in due course. 

The government’s draft legislation is currently being discussed in the parliamentary Health Committee. Apparently the proposed three-day waiting period is going to stay, even though it was attacked by Dr Peter Boylan, of the Institute of Obstetricians and Gynaecologists, as “demeaning” and making “presumptions about women’s ability to make decisions about their own healthcare”. 

One controversial aspect of the legislation is conscientious objection by healthcare workers and other staff who object to abortion.

Head 15 of the bill affirms the right of a “medical practitioner, nurse or midwife” to refuse to participate. However, it also declares that they must “as soon as may be, make such arrangements for the transfer of care of the pregnant woman concerned as may be necessary to enable the woman to avail of the termination of pregnancy concerned.” In other words, they must refer women to a willing doctor.

Some people are lobbying for even more radical versions of the bill. Lawyers for Choice have called for complete decriminalisation of abortion, the replacement of ‘woman" with "pregnant person" or "woman or pregnant person"; and the establishment of “exclusion zones” around abortion clinics.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

13-year-olds given mastectomies at California clinic

How old does one have to be to consent to a mastectomy? Only 13, it appears. An article in JAMA Pediatrics on “Chest Dysphoria in Transmasculine Minors and Young Adults” at a US clinic was based on a survey which included 2 girls (transmale) who were 13 years old and had both breasts removed and 5 who were only 14.

According to the authors, who are based at the Center for Transyouth Health and Development at Children’s Hospital Los Angeles, “All postsurgical participants (68 of 68; 100%) affirmed the statement, ‘It was a good decision to undergo chest reconstruction.’”

Since the girls were overwhelmingly positive about their operation, the authors contend that “Professional guidelines and clinical practice should recommend patients for chest surgery based on individual need rather than chronologic age.”

However, it’s unclear whether the girls (transmales) had enough time for a mature evaluation of their life-changing decision. For nearly all the 68 participants in the survey, only two years had passed. To affirm that there were “very low rates of regret” among minors seems a bit premature. For instance, a study of women who had a single or double mastectomy found that they were quite unrealistic about life after surgery. “Patients generally thought mastectomy would be worse than it was, and they thought reconstruction would be better than it was,” said the lead author.

The other side of the coin is that the “chest dysphoria” of “transmasculine minors” was said to be so severe that it affected their health. They often resorted to chest binding, which is associated with “pain, rib fractures, light-headedness, weakness, skin infection” and other ailments.

This seems to be the justification for the authors’ conclusion that “Youth should be referred for chest surgery based on their individual needs, rather than their age or time spent taking medication. Individualized, patient-centered care plans should be considered the standard of care for all transgender adolescents, and referrals should be made accordingly.”

The article barely mentioned the role of parents and families in the minors’ decisions.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

British grandparents use dead son’s sperm to create child

Another fascinating chapter in the unfolding history of the Reproductive Revolution, this time about posthumous sperm extraction.

A few years ago an unnamed 26-year-old unmarried man was killed in a motorcycle accident in the UK and his body was not discovered for two days. His wealthy parents, who are in their 50s, immediately set to work. He had been their only son and they desperately wanted a male heir.

They engaged a urologist to extract sperm from their son’s corpse. This was frozen and a year later couriered to the California IVF clinic of Dr Jeffrey Smotrich. The man’s parents chose an egg donor whose profile matched an imagined spouse for their son.

Four embryos were created and Dr Smotrich performed gender selection to select a male. This was then implanted in an American surrogate and the child was born in 2015. After the necessary paperwork was completed to ensure that the child was legally theirs, the grandparents returned home.

There are serious legal issues hanging over all the participants in this drama. Extracting sperm posthumously without consent is probably a criminal offence. Professor Allan Pacey, a former chairman of the British Fertility Society, pointed out that “The clinician who extracted the sperm is in breach of the law as is the facility which stored and exported the sample.” Gender selection is also illegal in the UK (but not in California).  

Dr Smotrich said he had no ethical qualms about his role and said that the remaining sperm and three embryos were in storage. “I'm not here to judge who should be a parent,” he told the Daily Mail. “In this case, from what the parents told me, their son absolutely wanted children. I was happy to help a tragic story end with a happy outcome.”

The case created a furore in the British media. Barrie Drewitt-Barlow, one of Britain’s first gay fathers, commented on Good Morning Britain: “This woman was going through grief at losing her child and she wanted to make her son live on and this was her way of doing it. Who are we to judge? The technology’s there why not use it?”    



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

Amend law to allow organ donor euthanasia, say Canadian doctors

Canadian legislation and medical protocols need to be tweaked to allow euthanasia with organ donation, according to an opinion piece in the New England Journal of Medicine. Two doctors from Western University, in Ontario, and Robert Truog, a Harvard Medical School bioethicist, outline the changes that will be needed to ensure that patients can give as many healthy organs as possible.

Euthanasia offers significant advantages for transplant surgeons. The normal protocol is to wait for a couple of minutes after blood circulation ceases (donation after cardiac death). But even in that brief space of time the quality of the organs declines. If they were removed in a coordinated operation from a euthanasia patient, they would be as fresh as possible.

To achieve this, a few changes need to be made. The staff of intensive care wards are trained to keep people alive; in organ donation after euthanasia they would have to kill the patient. At the moment, too, a firewall exists between withdrawal of life support and organ donation so that patients are not killed for their organs. But with legalised euthanasia, there will be no need for the firewall.

Conscientious objectors could pose an obstacle.

Hospitals and organ-procurement organizations must therefore have protocols that allow clinicians who object to opt out. Organizations also need to consider where to draw the boundaries of legitimate conscientious objection. Does the right to opt out extend to laboratory and pharmaceutical staff? What about the disposition of these organs — should clinicians be permitted to opt out of participating in the transplantation of donated organs, and should potential recipients be informed about the source of the organs in case they may want to decline transplantation?

It would also be necessary to do away with the dead donor rule – that a patient must be dead before donating. Presumably most euthanasia patients would agree to death through donation. But, at least in Canada, a euthanasia death must be caused by the administration of a “substance”, not by organ retrieval. The law would have to be amended.

The patients would be affected as well. One of the attractions of euthanasia is the prospect of dying peacefully surrounded by family and well-wishers. But with organ donation euthanasia patients would die in the sterile atmosphere of an operating theatre. 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

Most Quebec doctors in survey favour euthanasia for demented patients

Most Quebec doctors are in favour of euthanasia for incompetent patients with dementia in a terminal stage, according to a survey conducted by researchers at Université de Sherbrooke and institutions in Belgium and the Netherlands.

Current legislation requires that patients be competent and request euthanasia, but there is a movement to allow it for incompetent patients as well.

The results, which were published in the Canadian Journal of Public Health, were based on responses from 136 French-speaking physicians in Quebec involved in end-of-life decisions.

Physicians favoured continuous deep sedation over euthanasia for relieving suffering if patients were in an advanced stage of cancer. For cases of advanced dementia, 45% of physicians supported euthanasia with a written request and 14% without one. At the terminal stage of dementia, these proportions increased to 71% and 43%.

Somewhat surprisingly, the survey suggests that Quebec physicians are even more willing than their counterparts the Netherlands to be involved in euthanizing patients with terminal dementia. The authors of the article speculate that this may be the case because Dutch physicians know how difficult it is to determine whether demented patients are suffering unbearably and whether they meet other legal requirements.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

One drug manufacturer’s moral universe

It’s important to establish an ethical framework before launching into debates on specific issues. And although he is being reviled on Twitter, at least Nirmal Mulye, the CEO of Nostrum Laboratories, a small pharmaceutical manufacturer based in Missouri, has a firm and clear ethical framework: to maximise profit.

In an interview with the Financial Times, he defended his decision to raise the price of an antibiotic for urinary tract infections from US$474.75 to $2,392, a 400% hike. “I think it is a moral requirement to make money when you can  . . . to sell the product for the highest price.”

The product, nitrofurantoin, appears on the World Health Organization’s list of essential medicines. It comes in a tablet form as well as the liquid version which Nostrum makes. A competitor, Casper Pharma, is already selling a version of nitrofurantoin for $2,800.

“The point here is the only other choice is the brand at the higher price. It is still a saving regardless of whether it is a big one or not,” said Mr Mulye.

He also defended Martin Shkreli, who became notorious in 2015 for raising price of an AIDS and cancer drug from $13.50 to $750 per tablet. “I agree with Martin Shkreli that when he raised the price of his drug he was within his rights because he had to reward his shareholders,” said Mr Mulye.

In a tweeted response, FDA commissioner Scott Gottlieb said: “There’s no moral imperative to price gouge and take advantage of patients. FDA will continue to promote competition so speculators and those with no regard to public health consequences can’t take advantage of patients who need medicine.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

Charlie Gard amendment introduced into British parliament

An amendment to the UK’s Mental Capacity (Amendment) bill has been introduced in British Parliament, with veteran politician Lord James Mackay seeking to prevent the escalation of treatment disputes to the courts.

Lord Mackay’s proposed amendment, introduced on September 4, would compel hospitals to offer “medical mediation” to families to resolve disputes before resorting to the courts. It would also force the Government to provide access to clinical ethics committees to advise doctors and families on life and death decisions.

The amendment pertains to a bill currently under debate in UK parliament which would significantly alter the Mental Capacity Act 2005.

Lord Mackay’s amendment is based on a proposal drafted in memory of baby Charlie Gard in a bid to spare other families courtroom clashes with doctors. The amendment stops short of empowering families to seek treatments elsewhere, and in its current form only applies to adult patients. It is, nevertheless, a significant step toward legislative reform.

“I am happy to have laid this amendment which seeks to prevent cases reaching court unnecessarily”, Lord Mackay told reporters. “This is a proportionate and long-overdue measure which I hope will be the first small step toward realising Charlie’s Law”.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

“Baby factories” in the Ukraine exposed

Damning reports have emerged of systemic exploitation in Ukrainian surrogacy businesses, with one expert labelling some of the worst clinics “baby factories”.  

An Al Jazeera feature article published this week details the harrowing story of several surrogates and clients of the Ukraine’s largest surrogacy company, BioTexCom.

The company, which employs thousands of surrogates and accounts for over half of the surrogate births in the country each year, has been accused of grossly mistreating women and providing surrogates with substandard medical care.

According to Al Jazeera, the BioTexCom offers women generous remuneration (around US$11,000 plus a monthly stipend). Yet it provides “employees” with terrible accommodation during pregnancy, threatens fines if women break strict rules imposed during pregnancy, and fails to provide adequate medical attention through the nine months of child-bearing.

"We were treated like cattle and mocked by doctors”, said one woman who bore a child for a client of BioTexCom in 2017. That particular woman fell seriously ill after giving birth due to a retained placenta -- an emergency condition that should be treated by doctors within hours. Yet the placenta was only removed five days later after woman started bleeding heavily and had to be rushed to intensive care.

The owner of BioTexCom, Albert Tochilovsky, was charged earlier this year with human trafficking, document forgery and tax evasion in Ukraine. If convicted, they could face up to 15 years in prison.

The Ukrainian surrogacy market also made the news recently after scores of Spanish couples who had commissioned surrogates in the country were unable to obtain Spanish passports for their newborn children.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

Alcor sued for freezing man’s head but not his body

A man is suing the US cryonics firm Alcor after his deceased father was cremated and only his head preserved, despite a contract specifying whole body preservation.

Kurt Pilgeram’s father Dr. Laurence Pilgeram, a scientist, had taken out a contract with Alcor in the early 1990s, requesting that his body be preserved upon death. Preservation costs upwards of US$80,000, and “members” must also pay a yearly fee.

Dr. Pigeram died in 2015 at 90 years of age after collapsing on the sidewalk outside his home in Goleta, California. His body was taken to an Alcor facility where it is alleged that the company deliberately had his body cremated and only preserved his head. Kurt Pilgeram heard nothing from the company for two weeks after his father’s death, until a package arrived at his door with his father’s cremated remains.

Mr. Pilgeram’s lawyers say that he has suffered “extreme emotional distress as a result of Alcor's actions and has been injured as alleged in an amount in excess of $1 million”.

An Alcor spokesperson told Gizmodo in an email that, “At this time Alcor cannot specifically comment about this case but Alcor generally is confident that the legal system will properly run its course, as it has in the past”.

While cryonics businesses have received significant media attention, only small number of people have opted to have their remains frozen. Dr Pilgeram was only the 135th individual to opt in for cryogenic preservation with Alcor as of 2015.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
15
 

When is it ethical to dig up the dead?

The bodies of the dead can be exhumed for a variety of reasons, such as criminal fact-finding, archeological exploration, and forensic research. Yet when is it ethical permissible to dig up the dead?

There has been much discussion of the topic in archeological circles in recent years. Archeologist Duncan Sayer, from Central Lancashire University in the UK, has published a book on the ethics of burial excavations. According to Sayer, the permissibility of exhuming a body depends on numerous factors. “It’s not okay to excavate human remains simply because we’re archaeologists and that’s what we do,” Sayer recently told Discover Magazine. He suggests that rescue excavations -- where burial sites are about to be destroyed by natural disasters -- are definitely permissible. But to justify disturbing unthreatened burials, archaeologists need clear, important research questions that cannot be answered without excavation. It is also irresponsible for any one project to dig an entire site or all its burials, according to Sayer.

Other academics suggest that broad community consultation is important. In an interview with National Geographic, Indiana University archeologist Larry Zimmerman said that the key issue is whether “the stakeholders have a level of say in it, beyond just the stakeholders who are in the scientific community”.

The issue is not confined to archeology. In 2015 the Church of England spoke out against growing trend in the UK of relocating bodies of deceased family for reasons of convenience.

“The permanent burial of the physical body, or the burial of cremated remains, should be seen as a symbol of our entrusting the person to God for resurrection”, a Church spokesman told the Sunday Express. Under UK law,  remains can only be exhumed on the authority of the Justice Secretary or the Church of England if from consecrated ground.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

Is the California Institute for Regenerative Medicine worth it?

In 2004 California voted 59% to 41% for Proposition 71, an amendment to the state constitution which would create the California Institute for Regenerative Medicine through a US$3 billion bond issue. Interest added another $3 billion to the bill. Now the CIRM’s funding has nearly run out and its supporters plan to ask voters to authorise another $5 billion in funding in 2020.

The San Francisco Chronicle has reviewed the record of the CIRM’s research in a special feature. Without committing itself, the newspaper suggests that renewing the CIRM’s contract with voters might not be a good investment.

First of all: the promise. Back in 2004 supporters of Prop 71claimed that “Nearly half of all families in California could benefit from stem cell treatments Prop. 71 would help create. One study it commissioned found that new, life-changing therapies could emerge in just a few years. And Prop. 71 would pay off financially, the campaign claimed, creating thousands of jobs and potentially returning the state's investment more than seven times over.”

Second: the reality. Californians were voting for quick cures, not training scientists, new research buildings or basic science. What happened is something different.

“No federally approved treatments have been produced. And without marketable therapies, the public is still far from reaping the up to $91 billion in health care savings by 2040 the campaign predicted.

“CIRM has funded nearly 50 clinical trials, but just four have been completed, meaning scientists enrolled all the patients they said they would and finished compiling data. One of those trials was an observational study that tested no new therapy. The others involved treatments that are still years, at best, from reaching the market.

“The state, once told to expect as much as $1.1 billion in royalties from CIRM-backed discoveries within 35 years, so far has received just a tiny fraction of that amount: a single payment of$190,000 from the City of Hope medical research center in Los Angeles County.”

In fact, soon after the campaign the CIRM issued a report which attempted to hose down the fires of hope about cures for dread diseases.

“The field of embryonic stem cell research was still young, the report warned. The road to marketing new therapies would be long and expensive. Most research never reaches human clinical trials, it explained, and most of those trials fail. Potential treatments for just a handful of diseases might be tested, and it was doubtful that a single approved therapy would be developed from the state’s investment.”

The toxic combination of generating unrealistic hope and the failure of reputable researchers at the CIRM to deliver proven cures has led to an unexpected result: a proliferation of clinics offering unproven, and sometimes dangerous, therapies.

But Robert Klein, the man who led the campaign for Prop 71 in 2004 and the CIRM’s chairman for its first seven years, is not daunted by the institute’s mixed record. He plans to campaign again in 2020. “In 2004 we had a vision of the future and data on animals,” he told the Chronicle. “In 2020, we will have patients who were paralyzed, patients who were blind, patients with cancer who will tell their story. The public will decide.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

Do transgender women have a right to gestation?

Successful womb transplants have given birth to the notion that transgender women or even cisgender men could bear children. In the latest edition of the Journal of Law and the Biosciences, Amel Alghrani, of the University of Liverpool (UK) strongly defends the idea that they have a right to gestate. “Transgender, non-binary, and other gender plural individuals have the same procreative liberties as cisgender individuals,” she contends. Denying them this right would be tantamount to cissexism.

This would be true even if the person in question already had children as a cisgender man. It is the lived experience that matters:

the question here is not necessarily one of having children; transgender women may already be parents and have had children both prior to gender affirming surgery transitioning and post, depending on what type of surgeries and hormonal therapies they have chosen. The question is one of securing an experience imagined as important to one's (gender) identity and hoped-for parental bonds.

Denying this right could possibly be a tragedy for the person involved, Alghrani says:

Whilst it is true that one may not traditionally regard a cisgender male not being able to get pregnant as a human tragedy, this may be because it is not yet possible and people do not have sympathy because someone cannot do the impossible. For instance, I may not sympathize with someone unable to teleport. But in a world where cisgender men can get pregnant/people can teleport, we may think differently and see it as a tragedy. Furthermore, rights are not based on whether something is perceived as a tragedy or not.

She concludes that (assuming a Millean view of liberty) no good arguments exist to confound a right to gestation for transgender women, non-binaries and so on:

 ...those who would exercise procreative liberty so that they can gestate a child do not have to show what good it would do, rather those who would curtail freedom have to show not simply that it is unpopular, or undesirable, but that it is seriously harmful to others, or to society and that these harms are real and present, not future and speculative.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

Melbourne hospital given right to administer transfusion without consent

A court in Melbourne, Australia, has approved a hospital’s request to administer a blood transfusion to a pregnant Jehovah’s Witness teenager despite her religious objection to the procedure.

The decision was made by a supreme court authority late last month after Mercy Hospitals Victoria requested approval to perform an emergency transfusion if necessary.

The pregnant teenager had told doctors that a transfusion was against her religious beliefs. But doctors were concerned that girl’s “small stature” put her at increased risk of hemorrhaging.

Associate Professor Campbell Paul, a consultant child psychiatrist at Melbourne’s Royal Children’s Hospital, told the court that, while the girl had been clear and consistent in her refusal of a transfusion, she was significantly influenced in her decision by her family and community. “[She has] been through considerable disruption and trauma through her life” and had “transgressed a major value of her family and her community” by having pre-marital sex.

“You could imagine that she feels very frightened” and worried about “further punishment”, he said.

The girl’s mother said via a translator that to forcibly administer a transfusion would be akin to assault or rape. She said that she would always always seek medical treatment for her children when they were unwell, and that ‘‘it’s just this matter of blood transfusion that she is not able to agree with’’.

Justice Cameron Macaulay granted Mercy hospital the authority to give the girl a transfusion if necessary as “a last resort” but only if they first used all other strategies to stop the bleeding and obtained authority from two doctors.

“I’m not satisfied that [the girl] has the maturity to understand the consequences of her choice,” he said.

“I do not consider that allowing her, in effect, to choose to die ... is in her best interests”.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

US insulin price hikes prove fatal for diabetics

Price increases to insulin in the United States have sparked public outcry, with some reports suggesting that diabetics are now rationing their injections to save money.

NPR recently reported on the tragic case of a 26-year-old diabetic man in Minnesota who died in his apartment in June 2017 after apparently rationing his insulin injections. The man, Alec Smith, had recently aged out of his parents’ health insurance policy, and was ineligible for state health insurance subsidies for his medication. Smith was earning less than $3000 a month, and was unable to cover the $1300 monthly cost of his insulin supplies.

Smith’s mother Nicole Smith-Holt is now campaigning to have the cost of the drugs slashed.

“The price of insulin has gone up over 1,200 percent in 20 years,” Smith-Holt told the Star Tribune earlier this year. “It’s not affordable. You’re price-gouging people who need this one product to live, to survive”.

The American Diabetes Association estimates that diabetics spend about $16,000 on health care annually, which is 2.3 times more than a person without diabetes would spend.

Victoria Gagliardo-Silver, a New York based writer and student, slammed Congress for inaction on the issue:

“It is absolutely shameful that in America, a developed country that is capable of spending over half of its federal spending budget on the military and only a measly six percent on health care allows people to die slow, painful, preventable deaths because medical care is too expensive”.  

States have attempted to introduce legislation that requires drug companies to justify price increases for prescription medicine, but the changes have been met with fierce opposition.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

Man discovers that partner had sperm swapped for lover’s during IVF

A Russian man has successfully sued an IVF clinic in Moscow after his wife secretly had his sperm swapped for a lover’s during an IVF procedure.

Maxim Anokhin and his wife Yana Anokina, 38, approached doctors at Kulakov Medical Centre in Moscow to receive IVF last year. While she underwent IVF treatment, Anokina arranged with a fertility specialist to have her husband’s sperm swapped without him knowing. Anokina had reportedly told the clinic she wanted the man she loved to be the father, but had let her husband pay for the treatment and kept him in the dark for the child’s first year.

Anokina only revealed the truth to her husband after their relationship went sour. The two are now in new relationships, but Mr Anokhin has sued the clinic that allowed for the secretive exchange to take place.

DNA tests proved that Mr Anokhin was not the father. Mr Anokhin's lawyer Olga Nemtseva said the clinic had a duty to her client and could not solely follow the wishes of his wife. The court found that clinic staff assisted the woman in swapping the sperm, and Mr Anokhin was awarded approximately US$6000 in compensation for his moral and financial damages.

The doctor involved in their case, Liya Kazaryan, mentioned in the lawsuit, has refused to speak in detail.

“I am not giving any interviews… I do not want to say a word on this matter,” she said.

But asked how a man could be certain he was the real father, she laughed: 'Only a woman can be sure”.

Anokhin said that the case was not about money, but about justice. He told reporters that he hoped that no men in the future were deceived as he had been.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

Buyers of designer babies will be overwhelmed by choice

The dream of “designer babies” is probably further off than most of us think because of all the technical issues involved. But it is coming down the pike. In the latest issue of the Journal of Law and the Biosciences Sonia M. Suter, of George Washington University, speculates about how a designer baby market would actually work.

In the first place, it would require industrial-scale preimplantation genetic diagnosis (PGD) and genome sequencing. Both are already available, although there is room for much improvement. The missing link is in vitro gametogenesis – creating sperm and eggs from somatic cells. So far this technology has been unsuccessful in humans, but it is possible to envisage a situation in a woman using IVG could produce 10,000 eggs, and thus 10,000 embryos. As an author referenced in Suter’s paper points out, “If IVG could be used to create 10,000 embryos for IVF, then this could improve the chances of finding the preferred genotype from just over 1% to more than 99.99%.” This is what Suter calls Easy PGD, or EPGD. She doesn’t explain what will happen to the other 9,999 embryos.

The point of Suter’s paper is that consumers could become paralyzed by the abundance of choice in choosing their offspring. Parents will be confronted with “dizzying amounts of probabilistic information about an enormous range of health risks and traits for each embryo. Making sense of that for one embryo is challenging enough; trying to make sense of it for tens or hundreds of embryos would be even more daunting.” They would require expert assistance to achieve their unique (or not so unique) combination of ideal baby likes and dislikes, from geneticists or from computer algorithms.

Suter points out that this might change “the reproductive experience”:

... the ability to select among so many embryos based on non-medical traits and less serious diseases could gradually, but profoundly, alter attitudes about what is in the future child's best interest. More important, it could shift the goal of selection from preventing harm to ‘perfecting’ reproduction far more than occurs today with prenatal testing. These cultural shifts would routinize selection against not just disabilities, but also disfavored non-medical traits, ultimately leading to a vicious cycle: reproductive choices would reinforce prejudice by reducing the number of children born with the disfavored disabilities or traits, which would increase selection against those traits, thereby further reinforcing prejudice, etc. While such a vicious cycle already exists with current reproductive technologies, the degree would be significantly different with EPGD, potentially changing the experience in kind.

Similar challenges to choice already exist, thanks to the internet, like selecting a partner or a sperm donor.

... one can easily envision fertility clinics offering different selection methods for EPGD along the lines of these different types of dating or sperm bank websites. Instead of eHarmony, imagine EmbryoHarmony,153 and instead of DonorMatchMe, imagine BabyMatch. If EPGD becomes an accepted form of ART, rather than leave parents to wade unassisted through the thicket of so much information, clinics would likely offer a range of algorithms to ease decision making. One can visualize the advertisements touting their potential to optimize the ability to find the ‘ideal’ parent–child match or to have children with a greater chance of health, ‘success,’ or well-being.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

The children of European vaccine sceptics are getting measles

According to the World Health Organisation more than 41,000 people in Europe had been infected with measles in the first half of 2018. At least 37 people have died. The total far exceeds the 12-month totals reported for every other year this decade. So far, the highest annual total between 2010 and 2017 was 23,927 in 2017 and the lowest was 5273 in 2016. 

Seven countries have seen over 1000 infections in children and adults this year (France, Georgia, Greece, Italy, the Russian Federation, Serbia and Ukraine). Ukraine has been the hardest hit, with over 23,000 people affected. Serbia reported the highest number of deaths --14.

What’s going on?

The measles virus is exceptionally contagious. To prevent outbreaks, at least 95% immunization coverage is needed every year in every community, as well as efforts to reach children, adolescents and adults who missed routine vaccinations. But some communities in Europe have slumped to below 70%.

One reason for low rates of vaccination is fear of the MMR vaccine. “In 2016 the Vaccine Confidence Project found that the European region was the most sceptical in the world on vaccine safety,” says Pauline Paterson, of the London School of Hygiene & Tropical Medicine.

According to The Guardian, “The cause of the vaccine doubters has been embraced by some political movements, who advocate ‘parent choice’. The Five Star movement in Italy opposes a law that would have fined parents who do not immunise their children, while in France, Marine le Pen of the newly-renamed National Rally party is against mandatory vaccination.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

IVF kids risk early arterial hypertension

Children conceived through assisted reproductive technologies may be at an increased risk of developing arterial hypertension early in life, among other cardiovascular complications, according to a Swiss study in the Journal of the American College of Cardiology.

The most common ART methods are in vitro fertilization and intracytoplasmic sperm injection, which can expose the gamete and embryo to a variety of environmental factors before implantation. Children conceived using ART make up 1.7 percent of all infants born in the United States every year and currently over six million persons worldwide.

The study assessed the circulatory system of 54 young, healthy ART adolescents (mean age 16) by measuring ambulatory blood pressure, as well as plaque build-up, blood vessel function and artery stiffness. It found that they had significantly higher arterial hypertension. “This places ART children at a six times higher rate of hypertension than children conceived naturally,” said the lead author of the study, Emrush Rexhaj, of University Hospital in Bern.

In an accompanying editorial, Larry A. Weinrauch, a cardiologist at Mount Auburn Hospital, said that the study’s small cohort may understate the importance of this problem for ART adolescents, especially since multiple birth pregnancies and maternal risk factors (such as eclampsia, chronic hypertension and diabetes) were excluded from the study.

“Early study, detection and treatment of ART conceived individuals may be the appropriate course of preventative action,” Weinrauch said. “We need to be vigilant in the development of elevated blood pressure among children conceived through ART to implement early lifestyle-based modifications and, if necessary, pharmacotherapy.”

IVF specialists acknowledged the warning, but observed that the study was a small one and that larger population studies should be carried out to see if these sombre results could be confirmed.

Yutang Wang, of Federation University Australia, commented that “ARTs involve the manipulation of early embryos at a time when they may be particularly vulnerable to external disturbances. Therefore, it is not surprising that ARTs could increase individual’s susceptibility to some diseases. Mice generated by IVF have a shortened lifespan compared with control mice. Whether this is the case in humans remains unknown. Future research will tell us whether ARTs increase long-term cardiovascular diseases such as stroke and heart attack in humans, and research into methods to minimise such risks are urgently needed."



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
08
 

A doctor who stayed

Hospital in Idlib destroyed in 2016 / Médecins Sans Frontières 

Healthcare workers, clinics and hospitals have been consistently targeted by the Assad government during Syria’s bitter civil war. Many doctors have fled. In this video the New York Times interviews one doctor, Mohammed al-Bardan, who has decided to stay to care for his people.

According to the World Health Organisation, “8 years into the conflict in the Syrian Arab Republic, attacks on health care facilities and personnel in the country continue to rise despite United Nations resolutions strongly condemning these attacks. In the first 6 months of 2018, there were 126 separate attacks on health care in Syria – more than for the whole of 2017. Syria now accounts for a staggering 70% of all attacks on health care facilities documented by WHO worldwide.”  



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

Uh-oh! Infanticide is back: why not, asks Norwegian bioethicist

Arguments which pose infanticide as a moral option have put bioethicists in hot water in recent years. But they are not going to go away. In an on-line-first article in the journal Bioethics, Norwegian bioethicist Joona Räsänen counter-attacks with a defence of the moral possibility of infanticide. (Attention, people! This does not imply a campaign to implement or legalise infanticide, only its theoretical morality.)

Räsänen first engaged with this issue in a 2016 article in Bioethics, whose assertions were questioned by several pro-life scholars, notably Christopher Kaczor. It is difficult to give a tidy summary of the the complex arguments deployed by Räsänen and his opponents, but here are some of the highlights.

First of all, he points out that he is not trying to justify infanticide. He simply wants to point out that pro-life arguments are mistaken and do not succeed in eliminating it as a morally permissible option.

Pro-life scholars contend that newborns have a right to life and that infanticide must be wrong because it violates this. Not so, responds Räsänen. There exists an argument permitting infanticide which does not deny their right to life. Since this may be quite novel to readers of BioEdge, it is worthwhile quoting in full:

But there might be an argument that gives, for example, the genetic parents a right to kill (or leave to die) their newborn infant even if the infant has a right to life. For example, it might be argued that people have a right to their genetic privacy and having the newborn infant in the world that carries the genetic material of the genetic parents violates their right to genetic privacy. Put another way: the fetus does not have a right to the genetic material of her parents.

He put this argument forward in an article in Bioethics last year in the context of ectogenesis. But what about 10-year-olds? Don’t they infringe on their parents’ privacy rights? No, says Räsänen, they have been alive longer and have “a strong time‐relative interest to continue living”.

Pro-life arguments also involve assert that even embryos have a right to life. Räsänen subjects this to a reductio ad absurdum:

If the death of an embryo is as bad for the embryo as the death of a standard human adult is for her, it seems that spontaneous abortions are one of the most serious illnesses of our time, and if we do nothing to stop them we are acting immorally. So if pro‐life scholars really believe that human fetuses have significant moral status, they have strong moral obligations to oppose spontaneous abortion. Yet, few of them, devote any effort to doing so.

Finally, personhood is a threshold concept: foetuses only become persons once they have developed enough qualities to qualify as human beings. This is a standard response to pro-life objections, but Räsänen embellishes it with another reductio ad absurdum

A standard human fetus (or an infant) cannot value continuing of his life (or almost anything else for that matter), therefore killing it does not violate its flourishing, it only violates its future possible flourishing. The mere possibility for future flourishing as a reason for the moral status seems to be an untenable view unless one is willing to accept that cats, which could miraculously be turned into persons with a magical serum, would have same rights, before they had been injected with the serum, as human persons do. That is because they would still have a potential for flourishing like ours.

The article is certain to spark a lot of debate.

(By the way, Räsänen does acknowledge that his critics “have engaged this important topic in a respectful and civilized manner”.)



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

Protecting the world through moral bioenhancement

The co-existence of large numbers of Very Bad Hombres and readily available means of mass destruction is seen by a number of bioethicists as a grave threat to the future of humanity. About a decade ago, some of them began to speculate about whether it might be possible to create a world of order, peace and virtue through what they termed “moral enhancement” or “moral bioenhancement”. The idea was to make people altruistic and pacific by spiking the water supply, vaccinating them or adding agents to air conditioning systems in public buildings.

Whether this is feasible or not is still unknown, although some chemicals show promise. In the meantime, bioethicists are busy discussing the whys and wherefores. The stakes are not trivial. As they see it, with nuclear weapons, biological weapons and, more recently, the threat of hostile artificial intelligence, on the horizon, humanity lives under a sword of Damocles.

The latest contribution to the swelling volume of literature on the topic comes in an early on-line article in Bioethics by Parker Crutchfield, of Western Michigan University medical school. Assuming that this is the situation, he asks, should moral enhancement be compulsory? And if it were to be compulsory, should it be kept secret from the population? He answers Yes to both questions.

Crutchfield contends that the whole population should be inoculated against evil because a single bad hombre can do immense harm:

Where it used to require an extraordinarily coordinated effort to cause ultimate harm, now, or in the near future, it only takes one person. Thus, moral bioenhancement ought to be compulsory for everyone.

Of course, this assertion comes with some caveats – that moral bioenhancement is actually cost-effective, will prevent “ultimate harm” and is safe. But we need to acknowledge that a voluntary system will simply not work:

I'm skeptical [he writes] that voluntary moral bioenhancement is up to the task. People who volunteer for moral bioenhancement are not those about whom we should be most worried: It's those who have no interest in being better people that should worry us.

Assuming that these conditions are met, should the population be informed that they have been morally bioenhanced? Given the stubborn resistance to relatively inconsequential “enhancements” such as a measles vaccine or fluoridated water, it is likely that compulsory moral bioenhancement would face stiff opposition.

... if the moral bioenhancement program were overt, inevitably some people would refuse or otherwise fail to receive the intervention. Because the program is compulsory, however, policies would be required to compel such people to undergo the intervention. These policies would take the form of isolation (e.g., preventing dissenters from fully participating in society), taxes or fees as penalties, or, in severe cases, imprisonment. All of these methods of compulsion restrict liberties.

On balance, therefore, with due respect to the values esteemed by a democratic society, covert moral bioenhancement will be necessary, Crutchfield argues. And apart from transparency, it supports liberal values:

A covert program better promotes equality, because by keeping the program covert to everyone, the program ensures that all participants are treated equally. It is totally impartial.

In an age of aggressive media investigations and whistleblowers, it might hard to keep such a program under cover. But Crutchfield says that this does not impugn his reasoning:

Keeping a covert program covert would be a challenging obstacle. But just because it would be a challenging obstacle doesn't mean that my argument is unsound.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

A world of Methuselahs?

Life extension—slowing or halting human aging—is now being taken seriously by many scientists. Although no techniques to slow human aging yet exist, researchers have successfully slowed aging in yeast, mice, and fruit flies, and have determined that humans share aging-related genes with these species.

In his recently published book New Methuselahs, John Davis, of California State University, Fullerton,  offers a utilitarian defence of possible objections to widespread life extension. Despite its enthusiastic reception amongst transhumanists, a number of people object to it. In an article in The Conversation, Davis responds to a few of these.  

Is living forever a good thing? Just as Jonathan Swift painted a horrifying picture of longevity in his description of the Struldbruggs, philosopher Bernard Williams argued that centuries of living would be boring and that if it weren’t, we would probably be different persons. Perhaps, responds Davis, but (to paraphrase John Stuart Mill), different strokes for different folks. There is no reason why we should prevent people from taking the risk of boredom.

Unequal access. Life extension might only be available to the rich. Yes, says Davis, but increasing equality by denying access is unjust. There are not enough organs to go around, but this is no reason to stop organ transplants.

The world will become overpopulated. This could be a problem, but the solution is to ban procreation after a certain age.

Envy. If life extension is unevenly distributed in society, death would feel worse for those who die at a normal age and feel cheated of the extra years that access to life extension technology could have given them. Davis agrees that this is a reasonable objection. However, he counters that “not just any harm is enough to outweigh liberty. After all, expensive new medical treatments can extend a normal lifespan, but even if that makes death slightly worse for those who can’t afford those treatments, no one thinks such treatments should be banned.”

On balance, Davis contends, life extension is a good thing and life extension research should be funded aggressively.  



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

The difficult bit is surviving to 100. After that, it’s cruising

Jeanne Calment, of France, who died at 122 

Want to be a supercentenarian? The chances of reaching the ripe old age of 110 are within reach -- if you survive the perilous 90s and make it to 105 when death rates level out, according to a study of extremely old Italians published in Science.

Researchers tracked the death trajectories of nearly 4,000 residents of Italy who were aged 105 and older between 2009 and 2015. They found that the chances of survival for these longevity warriors plateaued once they made it past 105.

The findings challenge previous research that claims the human lifespan has a final cut-off point. To date, the oldest human on record, Jeanne Calment of France, died in 1997 at age 122.

"Our data tell us that there is no fixed limit to the human lifespan yet in sight," said study senior author Kenneth Wachter, a UC Berkeley professor. "Not only do we see mortality rates that stop getting worse with age, we see them getting slightly better over time."

Specifically, the results show that people between the ages of 105 and 109, known as semi-supercentenarians, had a 50/50 chance of dying within the year and an expected further life span of 1.5 years. That life expectancy rate was projected to be the same for 110-year-olds, or supercentenarians, hence the plateau.

The trajectory for nonagenarians is less forgiving. For example, the study found that Italian women born in 1904 who reached age 90 had a 15 percent chance of dying within the next year, and six years, on average, to live. If they made it to 95, their odds of dying within a year increased to 24 percent and their life expectancy from that point on dropped to 3.7 years.

As humans live into their 80s and 90s, mortality rates surge due to frailty and a higher risk of such ailments as heart disease, dementia, stroke, cancer and pneumonia. Evolutionary demographers like Wachter and study co-author James Vaupel theorize that those who survive do so because of demographic selection and/or natural selection. Frail people tend to die earlier while robust people, or those who are genetically blessed, can live to extreme ages, they say. Wachter notes that similar lifecycle patterns have been found in other species, such as flies and worms.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

Brown researcher under fire for questioning transgender narrative

Last week BioEdge reported that PLOS One had published the first serious study of a new condition which Lisa Littman, a researcher at Brown University, called “rapid-onset gender dysphoria” (ROGD). She suspected that teenagers who had suddenly announced that they were transgender were influenced by social media and friendship networks – raising the possibility that they were not genuine.

Almost immediately the journal and the university were attacked for supporting transphobia. PLOS ONE responded that it would do “further expert assessment on the study’s methodology and analyses”. The editor told Science that “This is not about suppressing academic freedom or scientific research. This is about the scientific content itself—whether there is anything that needs to be looked into or corrected.”

And Brown removed a press release about the article from its website and replaced it with a letter from the dean of public health, Bess Marcus, who declared that it was important to listen to “multiple perspective”. She cited concerns that the article “could be used to discredit efforts to support transgender youth and invalidate the perspectives of members of the transgender community.”

There was a backlash from academics who felt that academic freedom was under threat. Jeffrey S. Flier, a former dean of Harvard Medical School, penned a vigorous attack on the journal’s response:

In all my years in academia, I have never once seen a comparable reaction from a journal within days of publishing a paper that the journal already had subjected to peer review, accepted and published. One can only assume that the response was in large measure due to the intense lobbying the journal received, and the threat—whether stated or unstated—that more social-media backlash would rain down upon PLOS One if action were not taken.

He also criticised Marcus’s letter and its suggestion that the findings could harm the transgender community:

Virtually any research finding related to human health may be used for unrelated and inappropriate purposes by independent actors. Indeed, this happens frequently in medical science, as when nutrition research is used to promote diets far beyond the validity of the underlying data. When this occurs, responsibility lies with those committing these acts, not the paper or its author.

The controversy raises an interesting question: is it ethical to publish findings which might be used to critique assumptions underpinning the existence of sexual minority groups?



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

Should we be more accepting of suicide in older adults?

Suicide can be impulsive and precipitated by mental illness. But what about when an a healthy, older person makes a calm and considered decision to end their lives?

According to Dr. Meera Balasubramaniam, a geriatric psychiatrist at the New York University School of Medicine, it is not uncommon to find individuals who are very old yet healthy, and who desire to die.

“So many of our patients are confronting this in their heads.” Dr. Balasubramaniam told The New York Times.

She recently published an article in the Journal of the American Geriatrics Society exploring the motivations of 72 year old patient who, though not terminally ill, expressed a desire to end his life “while still doing well”. Balasubramaniam considers some of the factors that may have been motivating this patient’s suicidal ideation, including a desire for a sense of control, a revulsion at the effects of aging and illness on the body, and Baby Boomer libertarian sentiment.

Is such a form of suicide something we should be accepting?

Dr. Balasubramaniam said that her own views were “evolving”. “Discussing it [with patients] doesn’t mean your advocating it”, she said.

Dr Yeates Conwell, a geriatric psychiatrist at the University of Rochester School of Medicine and suicide researcher, has deep reservations. The vast majority of older patients who end their own lives have a mental illness, typically depression, and they tend to be acting impulsively. This is not a “rational act”, but rather equivalent to the forms of pathological suicide that we seek to prevent.

“The suicidal state is not fixed,” Dr. Conwell said. “It’s a teeter-totter. There’s a will to live and a will to die, and it goes back and forth”.

When health care providers aggressively treat seniors’ depression and work to improve their health, function and relationships, he said, “it can change the equation”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
September
02
 

South Korean doctors “protest” new abortion regulations

Almost two thousand obstetrics and gynecology doctors in South Korea have protested tough new Ministry of Health and Welfare abortion regulations by refusing to perform abortions for women.

"We flatly refuse to carry out abortions, which the government has defined as an immoral medical action," the Korean College of Obstetrics & Gynecologists said in a statement in reponse to the regulations. 

The new government sanctions, which were released last month, threaten to ban doctors from practice for a month if they are found to have performed an illegal abortion. The regulations include abortion among a list of “immoral medical actions”, together with sexual assault and ghost surgery (where one doctor substitutes for another without the patient’s knowledge).

Abortion is illegal in South Korea except in cases of rape, incest, genetic disorders or where the pregnancy would threaten a woman’s health.

Lee Young-Kyu, vice-chairman of the Korean College of Obstetrics & Gynecologists, said that the ban was “simply appalling”. Patients who seek abortions were often poor or underage, she said, adding: “If women were forced to give birth in these circumstances, it puts a question mark on whether that is moral”.

The country’s Constitutional Court is currently reviewing the near total ban on abortion, and is expected to make a ruling later this year.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
26
 

Does ‘rapid-onset gender dysphoria’ exist?

Another ethical fight is brewing on the transgender front. Lisa Littman, of the Brown University School of Public Health, has published the first serious study of “rapid-onset gender dysphoria” (ROGD) in PLOS One. This is a condition in which gender dysphoria suddenly appears in puberty or even after its completion. This runs contrary to the current model of gender dysphoria, which assumes that it is present from a very early age. Unsurprisingly, its opponents claim that ROGD does not exist and that Littman’s research is “biased junk science”.

Dr Littman attributes ROGD, in part, to social contagion, as it appears to occur in clusters and is associated with depressive symptoms, such as disordered eating, aggression, bullying, and drug use.

Ethical problems emerge in treatment for ROGD, as they do for early-onset gender dysphoria. But in the case of very young children, psychologists assume that the condition is present from birth and fundamentally immutable. In the case of ROGD, there is a strong possibility that it is a passing fancy.

More than 80% of parents said that their child’s announcement of being transgender came “out of the blue without significant prior evidence of gender dysphoria.” Shouldn’t their testimony be taken into account? Some psychologists discount input from parents and treat the adolescents as if they had standard gender dysphoria. This seems unwise, suggests Dr Littman, as many websites give advice to adolescents about how to fake their symptoms and how to construct a narrative consistent with life-long gender dysphoria.

“The findings that the majority of clinicians described in this study did not explore trauma or mental health disorders as possible causes of gender dysphoria or request medical records in patients with atypical presentations of gender dysphoria is alarming,” she writes.

When an AYA presents with rapid-onset gender dysphoria it is incumbent upon all professionals to fully respect the young person’s insider perspective but also, in the interests of safe diagnosis and avoidance of clinical harm, to have the awareness and humility themselves to engage with parental perspectives and triangulate evidence in the interest of validity and reliability.

An earlier statement of Littman’s views was dismissed in The Conversation by two Canadian academics, who insisted that psychologists are eminently trustworthy:

Transgender children are in good hands. Therapists aren’t acting hastily in ignorance of scientific evidence. On the contrary, their approach is one that’s been built over decades of research and of following trans children. The unfounded idea of rapid-onset gender dysphoria is a poor attempt at manufacturing a new moral panic — based on the same old idea of “contagion” — over children who couldn’t be in safer hands.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
26
 

Dementia’s Catch-22

People who fear living with dementia face a Catch-22 situation. When they are competent, they can write an advance directive asking for assistance in dying when they become deeply demented. But in the depths of their dementia, they can no longer confirm their intention to be killed and they might even refuse. A classic Catch-22.

A special feature in The Hastings Center Report explores this dilemma. Basically the ethical question revolves around whether nutrition and hydration is personal care or medical treatment. If the former, they cannot be denied as a matter of basic human dignity, just as we would not allow a comatose patient to lie in his own excrement. If the latter, they can be withdrawn because otherwise they would constitute illicit battery.

Norman L. Cantor, a retired Rutgers law professor, argues that it is ethical to withdraw nutrition and hydration from a demented patient whose advance directive specifies this course of action when he is no longer capable of making autonomous decisions.

... a basic precept of precedent autonomy is that a person's values and principles—whether grounded on religion, altruistic concern for others, or a conception of intolerable dignity—are entitled to implementation.

If they have not thought about it carefully, most people would probably agree with this approach. However, three articles take issue with Cantor’s presentation of the problem.

Elizabeth Chuang and Lauren Flicker, of Albert Einstein College of Medicine, contend that denying food and water is an affront to human dignity:

Withholding food and water from an incompetent patient who complains of thirst and hunger is an affront to basic dignity that is not adequately ameliorated by sedation. It represents inhumane treatment of the vulnerable person. Thirst is a particularly strong basic human drive that is difficult to palliate. The dying process can take days or as long as two weeks, during which time a caregiver under Cantor's model would continually have to refuse the patient's demands for water.

Rebecca Dresser, of Washington University Law School, takes a slightly different angle. She points out that the perceptions and preferences of people who are demented change. They may be content with their situation, no matter how bleak it may seem to observers:

even well‐informed individuals can make misguided choices because dementia is a “transformative experience” that affects people in ways that they cannot anticipate. As a result, they can only guess what they might want and need as a person with dementia.

Finally, Daniel P. Sulmasy, of Georgetown University, counters that suicide inevitably has an effect upon others in society:

Norm, if we sanction your starving yourself to death so that you don't suffer Alzheimers disease, then we throw a question smack in the face of countless disabled persons everywhere: why are you still burdening yourself (and us) with your life, which is similarly unworthy of life?



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
26
 

The Economist hosts a debate on ‘assisted dying’

The Economist, the world’s most respected news magazine, is a staunch supporter of legalising assisted suicide and euthanasia. But as part of its 175th birthday celebration, it opened its pages to a debate. Below are excerpts from a selection of participants.

Stephen Fletcher, a Canadian quadriplegic, Manitoba MP, and member of the Queen’s Privy Council in Canada. “In a liberal democracy we don’t try and dictate how people should live so why does society try to dictate how people should die? Dying with dignity is the greatest shift in morality in Canada in this generation.”

Emilie Yerby, a Guernsey politician. “If we are fallible in every other attempt to care for people through illness and the end of life, we will be fallible in our provision of assisted dying. We have no rational grounds to expect otherwise. And the consequences of our fallibility, however rare, can only be wrongful deaths.”

Dr Ellen Wiebe, a GP in Vancouver who has participated in over 150 assisted deaths since Canada legalised euthanasia in 2016. “And how do I feel when I provide an assisted death? Grateful to be a Canadian doctor in 2018 and have the ability to end the suffering of people dying of this array of horrible diseases.”

Charles Falconer, Britain’s Lord Chancellor from 2003 to 2007 and chair of the Commission on Assisted Dying. “It cannot be right that terminally ill people are denied choice based on the argument that the safeguards aren’t enough. The current law on assisted dying makes a mockery of due process, lacks popular support, is inhumane and fails to protect the vulnerable. It needs to change.”

Baroness Ilora Finlay, a crossbench peer in the House of Lords, professor of palliative medicine, and chair of Living and Dying Well. “We should not forget that laws are more than just regulatory instruments. They also send powerful social messages. An assisted dying law sends the subliminal message, however unintended by legislators, that if we are terminally ill taking our own lives is something we should consider. ... It is hardly surprising therefore that legalisation is inevitably followed by a continuing upsurge in such deaths.”

Kevin Yuill, historian at the University of Sunderland, in the UK. “I’m an atheist and a liberal. I support abortion rights. You might think that would make me supportive of assisted suicide ... We currently place equal moral weight on human life and do not measure it by years left or physical ability. Instituting assisted dying threatens that moral precept.”

Dr Peter Saunders, director of Care Not Killing. “Part of living in a free democratic society is that we recognise that personal autonomy is not absolute. And one of the primary roles of government and the courts is to protect the most vulnerable, even sometimes at the expense of not granting liberties to the desperate.”

Trista Carey, a Canadian lawyer. “A pro-choice person in every meaningful way, I have always fundamentally believed that we retain the inherent right to autonomy over our own bodies. Assisted death was a natural extension of those beliefs.”

Benoit Beuselinck, a medical oncologist at the University Hospital Leuven in Belgium. “It is my impression that those who often ask for euthanasia are suffering from depression. Is administering death the solution that our society proposes to loneliness and mental illness? ‘Death’ is now replacing ‘care’, and ‘autonomy’ replacing ‘solidarity’. As such, weaker patients can become victims of assisted dying.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
25
 

Healthcare workers and the duty to treat Ebola patients

Do healthcare workers have a duty to treat Ebola patients?

This question has becoming more pressing in recent years, with the repeated outbreaks of the Ebola virus in Western and Central Africa and a high mortality rate among healthcare professionals. 105 cases of Ebola have now been confirmed in the latest outbreak, centering on the North Kivu region of the Democratic Republic of Congo.  

On one view, bioethical principles such as beneficence and justice mandate that doctors provide treatment to patients when they are in dire need. A failure to leaves patients without treatment and risks creating inequalities in the delivery of care in society.

Yet in some cases doctors may be putting their lives at risk, specifically when dealing with highly contagious viruses such as Ebola in poorly resourced healthcare facilities.

Dr. Sheikh Umar Khan, a virologist from Sierra Leone, died in July 2014 after treating over 100 patients for Ebola in Kenema, a major city in the most affected part of the country. He was just one of hundreds of healthcare workers who succumbed to virus over the course of the three year West African Ebola epidemic, which was finally declared finished by the WHO in July 2016. During that epidemic, healthcare workers were between 21-32 times more likely to be infected with Ebola than the general public.  

A new study published the Journal of Medical Ethics summarises the attitudes of 220 Guinean health care workers and 252 Guinean lay persons towards the duties of healthcare professionals to treat patients with Ebola. The study found that almost half of participants (47%) felt that the duty to care was not absolute, but rather contingent on factors such as working conditions and on one’s family responsibilities. A small minority of participants (23%) felt that HCPs did not have any duty to care at all.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
25
 

Western Australia set to debate euthanasia

A joint select committee for the parliament of Western Australia has published a report recommending that the state government introduce a bill to legalise “assisted dying”.

The report was authored by seven politicians from across the political spectrum and reviews the provision and regulation of end of life care in Australia and abroad, as well as summarising contributions made during an extended period of public consultation. The report contains a recommendation that they government sponsor a bill to legalise “voluntary assisted dying” for patients who are:

...experiencing grievous and irremediable suffering related to an advanced and progressive terminal, chronic or neurodegenerative condition that cannot be alleviated in a manner acceptable to that person, where death is a reasonably foreseeable outcome of the condition.

Interestingly, this is much broader than current Victorian law which only allows euthanasia and assisted suicide for patients with a terminal illness.
The report asserts that “there are many life‐limiting conditions that cause profound suffering that cannot be completely palliated”, and that “current lawful options available to people experiencing grievous and irremediable suffering at end of life are inadequate”.

Yet the document tabled in parliament also contains a minority report by Liberal MP Nick Goiran, describing the recommendations of the report as a “recipe for elder abuse”. Goiran argues that overseas experience, and experience from the short-lived Northern Territory euthanasia regime, indicates that “the risks of legalising assisted suicide (however described or defined) are too great as the consequences are final”.

The government of Western Australia has accepted the report, and says it will consider drafting legislation. Premier Mark McGowan is personally in favour of euthanasia and assisted suicide, though he noted that he was just “one vote out of many”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
25
 

Banning killer robots

A recent article in The Conversation by Harvard University law lecturer Bonnie Docherty argues that we should ban fully autonomous weapons (“killer robots”) as they are incapable of respect for human dignity.

Docherty, who has co-authored a report into the topic for Human Rights Watch, argues that killer robots risk fundamentally undermining the rules of war and effectively dehumanising armed conflict. According to Docherty, Robots by their very nature are unable to show compassion for other human beings, yet this is “an emotion that inspires people to minimise suffering and death”.

Killer robots are also incapable of recognising other human beings as human beings:

“these weapons could not truly understand the value of an individual life or the significance of its loss. Their algorithms would translate human lives into numerical values. By making lethal decisions based on such algorithms, they would reduce their human targets – whether civilians or soldiers – to objects, undermining their human dignity”.

As such, Docherty argues in favour of United Nations ban on fully autonomous weapons. Representatives from more than 70 nations will gather at the UN in Geneva later this month for a Convention on Conventional Weapons, and it is hoped that the delegates will agree to negotiating a ban.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
25
 

Japanese committee recommends no regulation for some gene editing

A government committee in Japan has garnered criticism after recommending that certain forms of gene editing in plants and animals should not be regulated.

The expert committee, convened by the Ministry of the Environment, recommended on Monday that only genetic editing involving exogenous genes (genes from outside the organism) should be regulated. Gene editing that involves switching off or deleting genes already present in the genetic code of organisms should not require government approval, the committee said.

The committee did, however, recommend the creation of a thoroughgoing information management system on organisms with edited genomes, under which the type and purpose of all organisms that fell outside GMO restrictions would have to be reported to the authorities with an exception of those produced at closed facilities for microorganisms.

Consumer groups criticised the recommendations, saying that there is no difference between gene editing that turns off genes and gene editing that introduces new genes.

“They (the committee) came to this conclusion after just two meetings. How can they say it's safe?”, said Consumers Union of Japan secretariat chief Michiyo Koketsu. “We need a debate that includes a wide range of experts, not just a small section of the research community”.

The regulation of gene editing of crops and animals differs in jurisdictions around the world. In late July, the European Union's top court ruled that crops created using genome editing methods should in principle come under existing law regulating Genetically Modified Organisms (GMOs). In contrast, the United State’s Department of Agriculture announced in late March that it did not plan to regulate CRISPR-edited crops in the same was as GMOs.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
18
 

Australian Senate votes down euthanasia bill

Australia’s senate has voted down a bill that would have allowed the country’s two territories -- the Australian Capital Territory (ACT) and the Northern Territory -- to legalise euthanasia.

The senate narrowly rejected the bill 36-34 after several days of debate, with a number of politicians who were previously undecided or in favour of the bill ultimately choosing to vote against it.

The bill was sponsored by an independent, Senator David Leyonhjelm, and was widely supported by the Australian Labor Party senators and senators from smaller parties. Most members of the government, however, opposed the legislation.

If successful, the bill would have overturned the Euthanasia Laws Act 1997, a law that removed the power of the ACT and Northern Territory to legislate on euthanasia. That law was introduced in response to the Northern Territory’s legalisation of euthanasia in 1995.

This latest development in the Australian euthanasia debate is particularly significant, as euthanasia legislation would likely have had strong support in both the ACT and Northern Territory. ACT Chief Minister Andrew Barr -- who is in support of euthanasia -- criticised the parliament for rejecting the bill, and said he would continue to campaign for change:

“[we] have been let down by the parliament...but we will not give up. The restoration of territory rights will be back before the parliament soon."

Australian bioethicists weighed into the debate. Some warned of the dangers of euthanasia legislation, while others compared slippery slope concerns to “scaremongering”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
18
 

Direct-to-consumer genetic testing is booming, but ethical concerns remain

In a little over a decade, genetic testing company 23andMe has gone from being a small startup in Silicon Valley to a multinational operation with over 5 million users in 48 countries. Despite an order by the FDA to cease marketing its personal genome service to consumers in late 2014, the company now has broad approval to market a variety of products, ranging from ancestry tests to tests for gene mutations related to Parkinson’s Disease, Late Onset Alzheimer's and breast cancer. The company received a boost last month when when pharmaceutical giant GlaxoSmithKline announced that it would purchase a US$300 million stake in 23andMe. GSK will be using data from 23andMe to develop drugs for diseases such as Parkinson’s Disease.

Yet despite the apparent consumer confidence in genetic testing companies, significant ethical concerns remain. Articles in the popular media routinely appear warning users of what they should be aware of before using direct-to-consumer (DTC) genomics services. Experts caution users about the incomplete nature of the tests conducted, the lack of context for users when interpreting the results of the tests, and the lack of scientific data to support the recommendations made to consumers by genetic testing companies. There are also questions surrounding privacy, as the recent data sharing agreement between 23andMe and GSK has made clear.   

Dr Andelka Phillips, a researcher at Trinity College in Dublin and the author of a forthcoming book about the direct-to-consumer DNA test industry, suggests that users should think very carefully before requesting a DTC genetic test:  

“What I would say to a consumer who is interested in this, is take time to make a decision about using a service, do some research. What is your level of comfort with your data being used for other purposes, shared with insurers or with pharmaceutical companies?... If I have a hereditary health condition in my family, perhaps I might not want to put my data in this system because it might affect my insurance coverage.”

As the cost of genome sequencing decreases, researchers and clinicians are debating whether all newborns should be sequenced at birth, facilitating a lifetime of personalized medical care. Yet a new special report on genome-wide sequencing of infants from The Hastings Center recommends against parents using DTC genetic testing to diagnose or screen their newborns. "Sequencing the genome of every newborn could cause parents to worry needlessly about their healthy baby," says bioethicist Barbara Koenig, one of the co-editors of the special report.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
18
 

Should doctors’ social media profiles be scrutinised?

Doctors and politicians have slammed proposed changes to the code of conduct of the Medical Board of Australia, alleging that the organisation is attempting to limit freedom of speech.

The Board, which is responsible for licensing doctors and investigating complaints, has just concluded a period of public consultation on revisions to its code of conduct, entitled "Good medical practice: A code of conduct for doctors in Australia". Among the changes are significant revisions to the document’s professionalism section. On matters such as social media usage, the revised document states:

If making public comment, you should acknowledge the profession’s generally accepted views and indicate when your personal opinion differs. Behaviour which could undermine community trust in the profession is at odds with good medical practice and may be considered unprofessional.

The Australian Medical Association fears that the proposed changes will silence dissenting opinion. AMA president Tony Bartone said that the changes risked “stifling doctors’ right to publicly express both personal and professional opinions while also undermining doctors’ contribution to the diversity of public opinion, debate, and discourse”.

“Many doctors don’t personally agree with abortion, contraception or voluntary assisted dying”, Dr Bartone said. “Just because a doctor does not hold ‘the profession’s generally accepted views’ on a particular social matter does not indicate a lack of medical professionalism or substandard medical practice”.

The proposed changes are said to relate to an investigation currently underway into the social media statements of Australian doctor and political activist David Van Gend. Dr Van Gend is being investigated by the Australian Health Practitioner Regulation Agency for “discriminatory conduct” after retweeting material critical of the transgender lobby and same-sex marriage.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
17
 

Introducing Snapchat Dysmorphia

The selfie fad is leading to a new psychological disorder, Snapchat Dysmorphia, according to an article in JAMA Facial Plastic Surgery. Cosmetic surgeons have noticed a trend for patients to request surgery which will make them look more like selfies they have “corrected” with apps. In 2015 42% of surgeons reported that some patients had requested this; in 2017, 55%. The authors, from Boston University School of Medicine, write:

Previously, patients would bring images of celebrities to their consultations to emulate their attractive features. A new phenomenon, dubbed “Snapchat dysmorphia,” has patients seeking out cosmetic surgery to look like filtered versions of themselves instead, with fuller lips, bigger eyes, or a thinner nose. This is an alarming trend because those filtered selfies often present an unattainable look and are blurring the line of reality and fantasy for these patients.

They suggest that the appropriate course of action is not surgery but psychological interventions, such as cognitive behavioural therapy, together with medication.

Selfies can be damaging for some people, they suggest. “The pervasiveness of these filtered images can take a toll on one’s self esteem, make one feel inadequate for not looking a certain way in the real world, and may even act as a trigger and lead to body dysmorphic disorder).”

The authors point out that selfies confuse people about reality. Their self-esteem is based upon what they see in photographs. “These apps are making us lose touch with reality because we expect to look perfectly primped and filtered in real life as well. Filtered selfies especially can have harmful effects on adolescents or those with [body dysmorphic disorder] because these groups may more severely internalize this beauty standard.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
17
 

Is the BMA introducing ‘backdoor euthanasia’?

The British Medical Association is studying whether doctors should be allowed to “pull the plug” on patients with severe dementia or other degenerative diseases.

Confidential draft guidelines are being circulated after a recent ruling by the High Court that NHS staff and officials do not need a court's permission to withdraw artificial nutrition and hydration from a patient who is incapacitated and unable to speak or feed themselves.

They say that doctors should be able to end the lives not only of patients in vegetative or minimally conscious states but also of those with common degenerative conditions, like advanced dementia, provided that it is in the patient’s best interest.

The Daily Mail quotes the proposal:

“Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

Other patients who could have treatment withdrawn would include stroke patients and patients with “rapidly progressing brain injury”.

After withdrawal of nutrition and hydration patients would die of thirst and starvation.

Dr Peter Saunders, of Care Not Killing, has seen the proposal and says that it is a disguised form of euthanasia:

British parliaments have consistently refused to legalise euthanasia or assisted suicide for people with a quality of life they would not find ‘acceptable’ or would not ‘have wanted’. But the BMA is saying that to end these lives by starvation and dehydration, rather than with a lethal injection or drinking poison, is perfectly acceptable. This is actually nothing other than euthanasia by stealth – euthanasia by the back door ...

What is largely disguised here in a lengthy and turgid 77-page document that few doctors or carers will ever read is a simple mechanism for ending the lives of dementia, stroke and PVS patients who are not imminently dying and who otherwise could live for months, years or even decades.

The BMA draft guidelines also set down that doctors should record the underlying condition as the cause of death on the death certificate. Professor Patrick Pullicino, of East Kent Hospitals University NHS Trust, another critic, says that this is tantamount to falsifying death certificates. “It will totally conceal the statistics of patients who are being dehydrated to death.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
17
 

Will Britain’s new opt-out organ donation system work?

Britain will change to an opt-out organ donation system by 2020 under proposed new legislation. “We believe that by making these changes, we can save as many as 700 more lives every year,” Jackie Doyle-Price, parliamentary undersecretary of state for mental health and inequalities, said in a statement.

However, the opt-out system is unlikely to increase the number of donations, according to a new study in the Journal of Experimental Psychology by psychologists from Queen Mary University of London.

Most organ donation legislative systems, whether opt-in or opt-out, include a clause that allows the final decision to donate to be made by family members. The National Health Service reported in 2016 that more than 500 families had vetoed organ donations since April 2010 even though they had been informed that their relative was on the opt-in NHS Organ Donation Register. This translated into an estimated 1,200 people missing out on potential life-saving transplants.

Lead author Dr Magda Osman explained: "We show it's harder to judge the underlying wishes of the deceased if they were on an opt-out and mandatory donation register. Why? Because making a free choice indicates what your preference is. If you don't actively choose and you are listed as a donor on the register, then it isn't clear if you really wanted to donate your organs. This matters because if in the event of death your relatives have to decide what to do, they may veto the organ donation if they can't tell for sure what your underlying wishes were."

To address problems like these, behavioural interventions, such as nudges, have been used to provide practical solutions that are based on psychological and behavioural economic research.

An example of a nudge is an automatic default, such as the ones often used in organ donation legislative system. The rationale behind an automatic default is that it can bridge the gap between a good intention and the effort needed to implement that intention into practice.

Dr Osman said: "Our findings are important because they challenge the efforts of many nudge enthusiasts to promote the use of opt-out defaults in organ donation."

She added: "To help increase actual rates of organ donation, we need more transplant coordinators working with families to help them understand the issues before being faced with a monumental and distressing decision.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
17
 

Why are there so few women doctors in Japan? Now we know

More deep bows of apology and expressions of profound regret in Japan – this time at Tokyo Medical University, where officials have admitted that they had been systematically altering the test scores of women applicants to favour men. An internal investigation has revealed that TMU administrators lowered the scores of all female applicants because they feared that they would leave the profession when they had children.

The investigation was originally opened after a government official offered a TMU academic preferential treatment for a research grant in return for his son’s admission. It turns out that TMU also raised the scores of other applicants in order to secure donations from their parents.

Many doctors had suspected that such shenanigans were responsible for the low ratio of women entering medicine. The ratio of women who pass the national medical exam has remained at around 30% for nearly 20 years. The scandal at TMU has strengthened the suspicions that other medical schools are discriminating unfairly against women.

“If you go abroad, 50% of doctors are women, and there are many female professors (at medical schools),” Kyoko Tanebe, an obstetrician, told the Japan Times. “That always made me question the state of Japan, where we rarely see a woman in the professor’s seat.”

“Instead of worrying about women quitting jobs, they should do more to create an environment where women can keep working,” Yoshiko Maeda, the head of the Japan Medical Women’s Association, wrote on the Association’s Facebook page. “And we need working-style reform, which is not just to prevent overwork deaths but to create a workplace where everyone can perform to the best of their ability regardless of gender.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

Is suicide different from physician assisted death?

Bioethicists have for several decades discussed whether Physician Assisted Death (PAD) can be distinguished from other forms of suicide. The question is of critical importance for suicide prevention initiatives in countries where PAD is legal, as it may be the case that the practice of PAD is undermining the work of organisations committed to reducing suicide rates.

A major intervention into the debate was made late last year by the American Society for Suicidology (ASS) -- the peak association in the United States that advocates for suicide prevention -- when the organisation released a statement declaring that “suicide is not the same as “physician aid in dying””. In that statement, the organisation suggested that certain features of “traditional” suicide -- such as the lack of competency of the suicider; the loss of meaning in one’s life; and the sense of hopelessness experienced by the individual -- make it a distinct sociological, medical and legal phenomenon from state sanctioned forms of PAD. The statement describes PAD as a relatively peaceful means to end one’s life, and suggests that it is closely scrutinised in all jurisdictions where it is legal (both in the US and abroad). The statement concluded with a bold assertion that a commitment to suicide prevention has “no bearing” on one’s attitude to PAD, and, furthermore, that the term “physician assisted suicide” should be deleted from use.

Yet three US psychiatrists have just published scathing critique of the statement in the journal JAMA Psychiatry, arguing in particular that the practice of PAD for psychiatric disorders is in many cases very difficult to distinguish from other forms of suicide. The authors of the paper -- Drs Scott Kim (NIH), Yeats Conwell (Rochester) and Eric D. Caine (Rochester) -- argue that the features of “traditional” suicide may indeed be present in cases of euthanasia for psychiatric disorders. The authors write:

“persons who receive psychiatric PAD share these characteristics [with persons who die by suicide]: they all have some form of mental illness; most also have personality disorders, have attempted suicide, and are socially isolated or lonely”.

The cite a series of papers published on PAD for psychiatric disorders in the Netherlands and Belgium, indicating a gross lack of oversight and concern for patient autonomy. One case cited in the article includes a man in the Netherlands who “jumped off a building, survived the fall with broken thighs, and then received PAD during the ensuing hospitalization”.

Importantly, the authors note that, even in cases where euthanasia is requested on the grounds of a terminal illness, patients often report psychological pain and despair and a fundamental loss of meaning.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

New guidelines seek to address misdiagnosis of disorders of consciousness

About four in 10 people who are thought to be unconscious are actually aware, according to new clinical guidelines for disorders of consciousness published in the journal Neurology.  

The guidelines, which outline best practice for managing patients in vegetative and minimally conscious states, are the product of an extensive consultation process with members of three speciality societies -- the American Academy of Neurology (AAN), American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research.

Among its key recommendations, the document advocates for a careful evaluation of patients by a clinician with specialized training in management of disorders of consciousness, such as a neurologist or brain injury rehabilitation specialist. The evaluation should be repeated several times early in recovery—especially during the first three months after a brain injury.

“People are sometimes misdiagnosed due to underlying impairments that can mask awareness,” said guideline lead author Joseph T. Giacino, of Harvard Medical School and Spaulding Rehabilitation Hospital in Boston. “An inaccurate diagnosis can lead to inappropriate care decisions and poor health outcomes. Misdiagnosis may result in premature or inappropriate treatment withdrawal, failure to recommend beneficial rehabilitative treatments and worse outcome”.

The article states notes that, while the prognosis of patients with prolonged disorders of consciousness differs greatly, some will eventually be able to function on their own and some will be able to go back to work. According to the guideline, approximately one in five people with severe brain injury from trauma will recover to the point that they can live at home and care for themselves without help.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

UK’s equality watchdog insists on transgender fertility services

The UK’s equality watchdog has demanded that the country’s National Health Service offer scarce fertility services to transitioning transgender people.

At the moment, 208 clinical commissioning groups around the UK decide whether to provide the “gamete extraction and storage” services to patients, but the Equality and Human Rights Commission (EHRC) claims that many will not provide these to transgender patients.

EHRC chief executive Rebecca Hilsenrath said: “Our laws and our values protect those who seek treatment for gender dysphoria. This means that where appropriate, treatment should be made available in order to ensure that access to health services is free of discrimination.

“A choice between treatment for gender dysphoria and the chance to start a family is not a real choice. We have asked NHS England to reflect on the true breadth of their statutory mandate and the impact on the transgender community of these outdated policies.”

This places the NHS in an awkward position. On the one hand, the EHRC demands preferential treatment for transgenders; on the other hand, it is constantly being hammered for not offering enough fertility treatment for conventional couples.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

Embryo research: why not make it the “one month rule”?

Since the 1980s, research on embryos in vitro has been governed by what is known as the “14 day rule”. The 14 day rule is a legal and regulatory precept  -- based on the consensus of experts from a range of academic backgrounds -- according to which embryos should not be grown in vitro for longer than two weeks. The notion of a 14 day limit on embryo research was first proposed by committees in the UK and the US, and later adopted in Europe and other countries such as Australia and Canada.

While the 14 day rule has remained in place for a number of decades, recent developments in embryology have led bioethicists to question whether there are any principled grounds for retaining it. Specifically, two separate studies have demonstrated that embryos can be kept alive, healthy and developing for at least up to two weeks. Furthermore, scientists suggest that augmenting the time-limit on embryo research would allow for new breakthroughs into research on the causes of miscarriages and genetic disease.

A new article in the journal EMBO Molecular Medicine argues that the 14 day rule “should not become a dogma in itself” and that “science is changing and regulations need to adapt”. The authors of the article, ethicists John B. Appleby (Lancaster) and Annelien L. Bredenoord (Utrecht), reject claims that the two weeks marks a morally significant moment in embryonic development. Rather, the authors propose 28 days as limit that accommodates for research possibilities while still acknowledging extant ethical concerns. They observe that a 28 day embryo has no proximate capacity to feel pain, and they suggest that we have no more reason to be concerned about the potential personhood of a 28 day embryo, particularly seeing as we already destroy 14 day embryos without any moral consternation. The authors write:

“...it is difficult to identify any compelling moral arguments against extending this limit to 28 days. In order for embryo research to fulfil its potential benefit to humans both now and in the future, we therefore propose that the current limit on research should be extended to 28 days or the equivalent developmental stage that is normally attributed to a 28‐day‐old embryo”.

In contrast, moral philosopher Dame Mary Warnock -- the lead author of a seminal report that led to the widespread adoption of the 14 day rule -- argued recently that the 14 day should remain in place. She wrote:

“Perhaps with the 14-day rule we erred on the side of caution. But you cannot successfully block a slippery slope except by a fixed and invariable obstacle, which is what the 14-day rule provided”.


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

Capital punishment stumbles ahead in US

Three news items this week illustrate the patchwork of capital punishment legislation in the United States.

On Thursday, a 59-year-old man, Billy Irick, was executed in the state of Tennessee for the rape and murder of a 7-year-old, a crime he had committed in 1985.

Tennessee, whose last execution took place in 2009, uses a cocktail of drugs to sedate and then kill the prisoner. Lawyers for prisoners on Tennessee’s death row described this as inhumane, but the challenge was dismissed by the State Supreme Court. A last-minute challenge on grounds of mental incapacity failed in the US Supreme Court in an 8-1 decision. Justice Sonia Sotomayor wrote a scathing dissent: “If the law permits this execution to go forward in spite of the horrific final minutes that Irick may well experience, then we have stopped being a civilized nation and accepted barbarism.”

The state of Oklahoma has not executed anyone for more than three years, partly because it cannot obtain the necessary drugs. After a botched execution in 2014, a three-year moratorium was declared on lethal injections. In 2015 the legislature made nitrogen asphyxiation the preferred method of dispatching prisoners. However, this week it was announced that protocols for this new method had not been finalised; it is unclear when executions will resume. Sixteen inmates on death row have exhausted their appeals and await the dates of their execution.

The state of Nebraska is planning its first execution in 21 years – a 60-year-old man, Carey Dean Moore, who killed two taxi cab drivers in 1979. But a German pharmaceutical company has sued to stop the execution because it will suffer reputational damage if its drug is used. Fresenius Kabi claims that the state obtained two of its drugs through illegal channels.  

Adding heat to the debate over capital punishment in the US was a recent move by Pope Francis condemning it as “inadmissible”. He decreed that the Catechism of the Catholic Church, an authoritative reference for official teaching, should be amended to read: “the death penalty is inadmissible because it is an attack on the inviolability and dignity of the person”. This came at an awkward time for Nebraska’s governor, Pete Ricketts, a Catholic who is an ardent supporter of the death penalty.   



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
11
 

Argentina narrowly rejects abortion bill

Argentina’s upper house this week narrowly rejected a bill that would have legalised abortion up to 14 weeks. The 38 to 31 vote means that the country will retain its tight restrictions on abortion. Currently, abortion is only permitted in cases of rape, when the mother is mentally disabled or if there is serious risk to her health.

An estimated two million protesters gathered outside of of Congress in Buenos Aires as politicians debated the proposal on Wednesday and Thursday, and groups of protesters clashed with police following the announcement of the result.

The country’s president Mauricio Mauri voted against the bill, but he allowed his party a conscience vote on the matter and said that he would sign the motion into law should it pass the senate.

Analysts attribute the failure of the bill primarily to opposition from senators from conservative northern provinces. Senator Mario Fiad from the northwestern Jujuy province described abortion a “tragedy”, warning, “the right to life is about to become the weakest of rights”. The Catholic Church and smaller evangelical churches also strongly opposed the bill.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
04
 

Is death by dehydration in a patient’s ‘best interest’?

The UK’s Supreme Court has ruled that court orders are not necessarily needed before withdrawing hydration and nutrition from a comatose patient. If doctors and the patient’s family agree that on-going treatment is not in his best interests, it may be stopped without applying for a court order.

Lady Black, a Supreme Court justice, said:

“Having looked at the issue in its wider context as well as from a narrower legal perspective, I do not consider that it has been established that the common law or the ECHR (European Convention on Human Rights), in combination or separately, give rise to the mandatory requirement, for which the official solicitor contends, to involve the court to decide upon the best interests of every patient with a prolonged disorder of consciousness before CANH can be withdrawn.

“If the provisions of the MCA 2005 (Mental Capacity Act) are followed and the relevant guidance observed, and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.”

The judgement was welcomed by Compassion in Dying, a sister organisation to the assisted-dying campaign group Dignity in Dying*. “Sometimes, sadly, it is in someone’s best interests to withdraw treatment, said a spokesperson. “[The judgement] will allow those closest to a person – their loved ones and medical team – to feel supported and empowered to make the right decision for the person, even when it is a difficult one.”

But it was criticised by Dr Peter Saunders, of the Christian Medical Fellowship.

Once we accept that death by dehydration is in some brain-damaged people’s ‘best interests’ we are on a very slippery slope indeed. There is a clear difference between turning off a ventilator on a brain-dead patient and removing CANH from a brain-damaged patient. In the first case the patient dies from their underlying brain injury. In the second they die from dehydration and starvation.

Similarly, PVS and MCS differ from conditions with a ‘downward trajectory’ because they are not progressive and do not in themselves lead inevitably to death.

The Supreme Court has set a dangerous precedent. Taking these decisions away from the Court of Protection removes an important layer of legislative scrutiny and accountability and effectively weakens the law.

It will make it more likely that severely brain-damaged patients will be starved or dehydrated to death in their supposed ‘best interests’ and that these decisions will be more influenced by those who have ideological or financial vested interests in this course of action.

* NB --The description of Compassion in Dying has been corrected. It is not the UK's leading "assisted dying" lobby, although Dying with Dignity, its sister organisation, is.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
04
 

Abortion activists unveil strategy for attacking conscientious objection

An “expert group” of abortion activists has launched a strong attack on the concept and practice of conscientious objection (CO) in healthcare. “The practice of refusing to provide legal and essential health care due to a doctor's personal or religious beliefs is a violation of medical ethics and of patients' right to health care,” says the International Women's Health Coalition in conjunction with Mujer y Salud en Uruguay.

A 46-page report, Unconscionable: When Providers Deny Abortion Care, argues that “the practice of refusing to provide legal and essential health care due to a doctor's personal or religious beliefs is a violation of medical ethics and of patients' right to health care”. The conclusions of the report are based on a meeting held in Montevideo, Uruguay, last year which brought together 45 participants from 22 countries, including the leading theorist of the attack on CO, Udo Schuklenk, of Queen’s University, in Canada.

To counter-attack against the growth of CO, the report recommends four avenues:

Reframe and rename. Reframe the debate to clarify and emphasize that “conscientious objection” is a misnomer that subverts the ethics, obligations, and standards of the health care profession.

Reclaim the concept of conscience. Do not cede the term “conscience” to those who prioritize individual beliefs over professional conduct and the right to access or provide health care. Shine a light on the harmful health consequences of conscience claims in the context of abortion care. Emphasize the “conscientious commitment” and professional conduct of health care providers who prioritize patients’ rights.

Quantify the costs incurred by health systems due to claims of “conscientious objection” to abortion. Managing conscience claims can be costly and can create inefficiencies in the allocation of scarce health care resources. Quantifying the costs would fill a gap in our understanding of the consequences of refusal to provide abortion care due to conscience claims.

Renaming is an important part of the activists’ campaign. Instead of “conscientious objection”, they suggest that it be called "refusal to provide services," "denial of services," or even "dishonourable disobedience".



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
04
 

UK cosmetic surgery ads criticised as ‘unscrupulous”

ITV, a commercial TV channel in the UK, will review its policy of screening advertisements for breast enlargement and diet pills during its wildly successful show “Love Island”.

It has been roundly criticised by the head of the National Health Service and feminists.

Love Island is a reality TV show in which attractive singles wander around, mostly in swimwear. Critics claim that advertisers are exploiting the insecurities of young women.

The companies whose ads were criticised include MYA Cosmetic Surgery, which offers loans for tummy tucks, breast enlargements and nose jobs, and Skinny Sprinkles, a diet supplement which describes itself as a “gastric band in a glass”.

NHS England chief executive Simon Stevens advised ITV to review its standards. “You’ve got explicit ads aiming at young women around breast cosmetic surgery. That is all playing into a set of pressures around body image that are showing up as a burden on other services.”

Whether the mea culpas of television executives will be followed by change is uncertain. The British Association of Aesthetic Plastic Surgeons recently issued a statement:

We are seeing the damaging effects of this cultural phenomenon on an increasingly vulnerable population, whereby the decision to seek out treatment is trivialised whilst individuals face intense psychological pressure to conform. By advertising cosmetic surgery alongside this type of programming - and in some instances, even using the stars of the show -- unscrupulous clinics are targeting young people in a way that commodifies surgery as a quick fix and endangers patients. It is worth noting that many of these clinics have a history of targeting young people using influencers to promote surgery, for which they have received public criticism- - but which has not halted this aggressive and unethical marketing tactic.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
04
 

Doctors’ well-being is suffering because of ‘moral injury’

In trying to understand post-traumatic stress disorders amongst soldiers, psychologists have developed the notion of “moral injury”. This is an injury to an individual's moral conscience after a moral transgression which leads to deep shame. In war, this might happen after soldiers have killed civilians or child soldiers.

In a recent article on Stat, two doctors argue that something similar is happening to American doctors. “Failing to consistently meet patients’ needs has a profound impact on physician wellbeing — this is the crux of consequent moral injury.” With the increasing complexity of medical practice, the potential for moral injury is growing.

The authors insist that moral injury is not just burnout – which is certainly a big problem amongst doctors. Its major symptoms are “exhaustion, cynicism, and decreased productivity”. But moral injury arises from the ethical frustration being unable to achieve what most doctors entered the profession to do: to heal their patients.

Navigating an ethical path among such intensely competing drivers is emotionally and morally exhausting. Continually being caught between the Hippocratic oath, a decade of training, and the realities of making a profit from people at their sickest and most vulnerable is an untenable and unreasonable demand.

“Moral injury” is a relatively new insight into doctors’ lives, although it has been studied amongst veterinarians. One paper argues that vets can endure considerable “moral stress” when they are asked to euthanize animals simply for the convenience of their owners. An Australian bioethicist has even contended that it exists amongst doctors who perform euthanasia in Belgium. “There is considerable moral injury occurring among the practitioners as it is opposed to the traditional ends of medicine,” says Dr Megan Best.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
August
04
 

No privacy in a transhumanist future, says former presidential candidate

What would life be like in a transhumanist future? Upgrading from Humanity 1.0 to Humanity 2.0 would involve unpredictable changes in social life, some of them major. In a recent interview one transhumanist who has thought more deeply about this speaks about the antiquated notion of privacy. Zoltan Istvan, who ran for US President in 2016 for the Transhumanist Party, said in an essay last year that there won’t be any need for it:

Privacy is a relatively new concept in history, and while it might have served the wealthy for a few thousand years, it’s not a long term phenomenon. Machine intelligence doesn’t need to be so disconnected. It will discard with privacy. You’re seeing that already with how much tech is making people’s lives so much less private. Transparency will create a society of trust, openness, liberty, and most importantly, safety.

Technology is currently available which makes brain implants plausible. Istvan speculates that “These brain-to-machine interfaces will likely eventually lead to the hive mind, where everyone can know each other's precise whereabouts and thoughts at all times, because we will all be connected to each other through the cloud. Privacy, broadly thought of as essential to a democratic society, might disappear.”

In fact, he says, it is already disappearing, through participation in social media, ubiquitous camera surveillance, and linking up data banks. “I'm hopeful it will, if disappearing privacy trends continue their trajectory, and if technology continues to connect us omnipresently (remember the hive mind?). We will eventually come to a moment in which all communications and movements are public by default.”

All communications? What about passwords to your bitcoin account? Ah yes, says Istvan, we’ll need special police to keep our brains from being hacked by cybercriminals. “The biggest need in the future will be cyber security coders, who will create ways to protect people that are basically interfacing directly with the web with their mind.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

British IVF clinics on a “gravy train”: Robert Winston

The 40th anniversary of the birth of Louise Brown, the world’s first IVF baby, on July 25 has been the occasion for cracking champagne bottles and congratulatory media features. But a British IVF pioneer, Professor Lord Robert Winston, contends that celebration should be much more subdued.

In an interview with The Irish News, he said that “people are being sucked into IVF without a full recognition of exactly how low the success rate is”. Private sector fertility clinics, he says, are on a “gravy train” in the UK. Mixing the "desperation" of couples for a child and the "avarice" of private practice is a "dangerous combination".

"The HFEA [Human Fertilisation and Embryology Authority] records success rate per embryo transfer, but that in itself is misleading, because a large number of women start a cycle but never get to the embryo transfer stage, either because their ovaries don't respond or because the eggs don't fertilise."

A significant problem of dealing with infertility is that is could have "50, 60 or 70 different causes" – and some of these could be treated with means which are less invasive and stressful than IVF.

"The first thing we need to change, which is something we're not doing in reproductive medicine, is to regard infertility as a symptom ... Right now, we regard it as a diagnosis and it's fundamentally wrong to offer a treatment on the basis of symptoms – because the underlying cause of the symptom will vary ...

"In many cases, in-vitro fertilisation is not the best [treatment] – but it's the most profit ... Unexplained infertility is a nonsense; it's a failure to make a diagnosis. People are reluctant to go through with investigations, which in my view are justified, because at the moment, so many patients are failing to get pregnant with an IVF cycle and then get pregnant after the IVF has finished.

"One of the important issues is making a diagnosis and finding other more effective simpler remedies, but most clinics are now geared up to do IVF, so they don't actually treat the underlying issue."



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

Another reason why cloning probably won’t work

Human cloning – illegal around the world -- is just a glimmer on the horizon of some rogue scientists. However, there are reasons why it might not work, in any case, says Dr Paul Knoepfler, on his blog, The Niche.

The popular supposition is that cloning will produce an exact physical duplicate of the person cloned. The Boys from Brazil, a novel and film from the late 70s, expresses this perfectly. In the 60s Dr Mengele cloned Hitler 94 times and sent the babies around the world to be adopted.

However, Knoepfler reminds his readers that contemporary research has shown that many people are actually chimeras; their cells carry a mixture of subtly different genetic codes:

This reality means that contrary to decades of dogma, not all of our cells have the same genomes. In fact, within our one body we can have many subtly different genomes. The variance may functionally be at a single gene or a combination. These genomic variances in one person mean that our cells have a certain degree of randomness and such variability may alter how our bodies function such as how our brains operate.

So the Hitler clones would have been different depending on which cell was selected to create the duplicated organism. In addition, there would be epigenetic and environmental differences which would result in further divergence from the original of Der Führer. “Of course,” he concludes, “the ethics of human reproductive cloning are not trivial as well, but keep in mind all you DIY cloners that you may not get what you wanted anyway due to chimerism.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

US psychologists to revisit ban on participation in interrogations

US psychologists are returning to the debate over participating in military interrogations. After humiliating revelations that members of the profession had colluded in abusive techniques during the “war on terror” after 9/11, the American Psychological Association (APA) banned participation in interrogations at Guantanamo Bay and other national security facilities.

But some psychologists feel that the new rules went too far. “It was the first time I can recall that APA outlawed a setting rather than a behavior,” says Mark Staal, president of APA’s Division of Military Psychology. “Nobody is in favor of illegal interrogation techniques, and [the ban] may have sounded good at the time. But it was an overreaction,” he says.

“We were put between a rock and a hard place,” Staal observes says about the 1100 members of his specialty. “International law requires the [authorities] to provide health care to detainees under their control. And it’s part of our job ... We weren’t doing anything illegal or unethical, So I’m not sure that it’s appropriate for a professional guild to restrict free trade like that.”

There is strong opposition to the proposed changes. “Clinical psychologists are already allowed [to provide mental health services] under the current policy, but they must be working directly for the detainee or a human rights organization,” says Stephen Soldz, a co-author of a 2015 report, All the President's Psychologists: The American Psychological Association's Secret Complicity with the White House and US Intelligence Community in Support of the CIA's 'Enhanced' Interrogation Program. He believes that the line between mental health treatment and abusive interrogation could easily be overstepped.

The Pentagon would also like to see a change in the APA’s policy. In 2016, a Defense Department spokesman put the case for participation:

“The context of future conflicts — whether a traditional international armed conflict like World War II or the Korean War, a defense of the homeland against international terrorist organizations like Al Qaeda or the Islamic State in Iraq and the Levant, or something entirely unpredictable — is today unknown. A code governing psychologists’ ethics in future national security roles needs to fit all such contexts. We respectfully suggest that a blanket prohibition on participation by psychologists in national security interrogations does not.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

South African bioethicist David Benatar explores the human predicament

For about four years, it seemed likely that Cape Town would become the world’s first major city in modern times to run out of water. Fortunately, that danger was averted by about March this year, but not before millions of words were spilled about the hopelessness of its plight.

Whether or not this bleak situation influenced David Benatar’s latest book, The Human Predicament, it certainly is an emblem of his pessimism. Professor Benatar, the head of the bioethics centre at the University of Cape Town, became a kind of intellectual celebrity with his 2006 book, Better Never to Have Been: The Harm of Coming Into Existence. The New Yorker has even described the bioethicist as “the world’s most pessimistic philosopher”. With the shade of Schopenhauer hovering over history's cavalcade of philosophers, this is a very big call, but Benatar's anti-natalist view that bringing children into the world is a kind of cruelty, may support it.

His latest book continues in the same vein. According to the publisher, Oxford University Press:

Benatar argues that while our lives can have some meaning, cosmically speaking we are ultimately the insignificant beings that we often fear we are. A candid appraisal reveals that the quality of life, although less bad for some people than for others, leaves much to be desired in even the best cases. But death, David Benatar argues, is hardly the solution. Our mortality exacerbates rather than mitigates our cosmic meaninglessness. It can release us from suffering but even when it does it imposes another cost - annihilation. This unfortunate state of affairs has nuanced implications for how we should think about immortality, about suicide, and about the aspects of life in which we can and do find deeper meaning.

Perhaps the pessimism has something to do with Benatar’s utilitarianism, upon which his arguments are largely based. While academic utilitarians may be karaoke champs on their weekends off, reading their dour and earnest prose suggests otherwise.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

Bioethicist says conscientious objection may be murder

Conscientious objection has been a hotly debated topic in bioethics for several years. Yet recent contributions to the literature have been particularly strident. A series of new articles in the American Journal of Bioethics strongly criticise healthcare professionals and institutions who object to abortion, effectively telling them to exit the profession or face punitive measures.

The target article for the edition -- a legal perspective on the conscientious objection written by Santa Clara University philosopher and legal scholar Lawrence Nelson -- argues that conscientious objectors may be guilty of no less than murder if they fail to help a woman in need of an emergency abortion. Nelson suggests that religious liberty is no justification for refusal to participate in abortion, and he suggests that any laws permitting such conscience based refusals are unconstitutional. He concludes his article by exhorting state authorities to prosecute healthcare professionals and administrators who wilfully deny women access abortion:

"...if the American criminal justice system is to honor its constitutional duty to give women the equal protection of the laws, it should prosecute those who fail to honor their legal duty to provide an abortion when a woman’s life depends on it."

Several other contributors argue that that there is no moral justification for conscientious objection to the provision of basic medical services. Bioethicists Udo Schuklenk and Benjamin Zolf argue that conscience based refusals put the physician interests before patient welfare, and thus violate one of the basic goals of medical practice. Mark Wicclair, an adjunct professor of medicine at the University of Pittsburgh, argues that conscience based refusals should only be permitted where they do not impede a patient’s timely access to healthcare services.

Rosamond Rhodes (Mount Sinai School of Medicine) and Michael Danzinger (SUNY Downstate Medical Center College of Medicine) argue that both doctors and hospitals are failing to fulfill a moral duty when they refuse to provide medically indicated treatments, such as abortions, for their patients:

“...Doctors who expect patients to suffer affront, inconvenience, or physical harm, so that they may avoid fulfilling their moral duty, act in a way that is incompatible with being a doctor because being a doctor involves the commitment to putting the welfare of patients before one’s own…”

They effectively state that religious healthcare providers that refuse to provide “accepted medical procedures” should exit the health sector:

"...If any religious group finds the performance of legal and professionally accepted medical procedures to be in opposition to their core religious beliefs, they can get out of the hospital business…"


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
28
 

China is struggling to undo a one-child culture

In January 2016, the Chinese government formally abandoned its one child policy in favour of a two child law. And recent reports suggest that authorities are now considering abandoning population control policies all together.

Yet despite the government’s sudden change in outlook  -- precipitated by an ageing population and dire economic forecasts -- authorities are struggling to encourage families to have more than one child. High living costs, long work hours and surging child-care expenses mean that many couples feel that they can only afford to have one child -- or none. In 2017, there were 17.6 million births in China, representing 12.43 births per thousand people. However, that was a drop from 2016, when the one-child policy was first relaxed -- a year that saw 12.95 births per 1,000 people.

Federal and provincial authorities are now mooting a range of policies designed to increase the birth rate. According to The Economist, several provinces now require women who are more than 14 weeks pregnant to secure the approval of three doctors in order to procure an abortion.

Health officials have taken to discouraging women from having Caesarean sections, arguing that they increase the risk of complications during a second pregnancy. Chinese courts are also beginning to tighten divorce rules by enforcing “cooling-off” periods after applications are filed—including, say critics, in some cases where a woman’s safety might be at risk.

The Times reported this week that the National Health and Family Planning Commission, the country’s peak health authority, is considering giving single women access to fertility services to help them conceive.

Yet some analysts suggest that even with these changes, it will be difficult to turn birth trends around. “China’s number of births will continue to drop dramatically, considering a sharp decrease in the number of fertile women and declining fertility willingness”, said Huang Wenzheng of the Center for China and Globalization, a Beijing-based think tank.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
27
 

Three children euthanised in Belgium

Three minors have been euthanised in Belgium since euthanasia for children was legalised in 2014. According to the latest report from the government agency (PDF in French) which tracks euthanasia deaths, the children were 9, 11 and 17 years old. Two died in 2016 and 1 last year.

Under the existing law, their request for death has to be voluntary and well-considered and the patient must be suffering unbearably, with no prospect of improvement.

"There is no age for suffering," said Professor Wim Distelmans, chairman of the Federal Commission for Euthanasia Control and Evaluation. "Fortunately, euthanasia among young people remains very exceptional. Even if it were only one, the law would have been very useful. "

The number of euthanasia cases seems to be rising rapidly in Belgium, particularly in Flanders, the Dutch-speaking region. In 2007, 495 Belgians chose euthanasia; in 2016 the number was 2,028 and in 2017 2,309. Four out of five are Dutch-speaking.

From the UK, Lord Alex Carlile, co-chairman of Living and Dying Well, a parliamentary group opposed to euthanasia, declared that he was “profoundly shocked” by the report.

“The euthanasia of those children is plainly contradictory of the European Convention on Human Rights. No parent and no public authority has the power to take away the life of anyone who is a child, whoever they are. The Belgium government is far too relaxed about this. It is not ensuring that appropriate checks are carried out and standards maintained. Belgium is perhaps the state that is causing the greatest concern in Europe about the way it administers euthanasia.”

Another controversial issue which surfaces in this year’s report is “polypathology” – a combination of illnesses which together makes life unendurable. Although cancer remains the principal reason for requesting euthanasia, the number of polypathology cases has risen from polypathology patients requesting euthanasia have almost doubled in the last four years from 232 to 444.

According to a discussion of child euthanasia in Belgium in the July issue of the Medical Law Review journal, “euthanasia accounts for 1.7% to 1.8% of all deaths in Belgium, although anonymous physician surveys suggest that the actual figure, at least in Flanders, the Dutch-speaking Northern half of Belgium, is closer to 4.6%.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
27
 

Only 7% of social egg freezers return for fertility treatment at Belgian clinic

Darren Hester / Openphoto.net, CC BY-SA 2.5, Link

Despite dramatic uptake in the numbers of women electing to freeze their eggs as insurance against an anticipated age-related fertility decline, few may be taking advantage of it. At one of Europe's biggest fertility centres, the Brussels Centre for Reproductive Medicine in Belgium, only 7.6% of women have returned to thaw their eggs and try for a pregnancy. And only one-third of those have been successful.

The information was released at the recent ESHRE meetingin Barcelona. The mean age of those freezing their eggs was 36.5 years and the ongoing pregnancy after an embryo transfer was 32.6%.

While social egg freezing in Brussels reflects an upward trend in popularity apparent in many other large European and US fertility centres, a spokesman for the Brussels Centre urged women considering uptake after the age of 35 "not to have unrealistic expectations." "Our results show that one in three women who return to the clinic do achieve an ongoing pregnancy with their vitrified oocytes," said Michel De Vos. "They returned at a mean age of 42 years after having their oocytes vitrified at a mean age of 36 years." But he warned that -- as with any fertility treatment -- egg quality declines markedly with age, and success rates will be lower than 33% in women freezing their eggs beyond this age.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 
July
21
 

UK bioethics thinktank endorses germline modification

The UK’s leading bioethics institute has given a green light to intergenerational modification of the human genome. In a major study of the ethical and practical issues (PDF) involved in genome editing and human reproduction, the Nuffield Council on Bioethics has concluded that it is “morally permissible”, provided, of course, that it is safe.

“It is our view that genome editing is not morally unacceptable in itself,” said Professor Karen Yeung, the chair of the working group which produced the report. “There is no reason to rule it out in principle.”

Professor Jackie Leach Scully, of Newcastle University, a co-author, told The Guardian that heritable genome editing could become an option for parents “to try and secure what they think is the best start in life” for their future children.

Once again, the UK is breaking new ground ethically. While the Nuffield report is purely advisory, most of its recommendations on similar topics have eventually become law in the UK. For this reason, its advice to the British government is of global significance.

But the conclusions of the report were immediately criticised – and in fact no government has authorised heritable modification of the genome. Dr David King, Director of Human Genetics Alert, told the BBC: "This is an absolute disgrace. We have had international bans on eugenic genetic engineering for 30 years. But this group of scientists thinks it knows better, even though there is absolutely no medical benefit to this whatever. The Nuffield Council doesn't even bother to say no to outright designer babies. The people of Britain decided 15 years ago that they don't want GM food. Do you suppose they want GM babies?"

And Marcy Darnovsky, of the Center for Genetics and Society, in California, commented that the report acknowledged that if reproductive gene editing were permitted, it would be used for enhancement and cosmetic purposes. “They dispense with the usual pretence that this could – or, in their estimation, should – be prevented. They acknowledge that this may worsen inequality and social division, but don’t believe that should stand in the way. In practical terms, they have thrown down a red carpet for unrestricted use of inheritable genetic engineering, and a gilded age in which some are treated as genetic ‘haves’ and the rest of us as ‘have-nots’.”

The ethical arguments in favour of modifying the genome are set out at some length in the long version of the report. Fundamentally they seem to rest on the rejection of “genomic essentialism” – that the genome defines a person. The report says that “genomic intervention is only one – and probably not the most significant – of the decisions that parents will make that affect their offspring (and it may become progressively less important as other biographical factors intervene, especially to the developing sense of self-identity).”

It goes on to ask whether “editing the genome of one’s descendants might amount to an infringement of human dignity”. The answer is that “We do not find the concept of human dignity helpful in this context. In our view, what is morally important about human beings is not dependent on the possession of a particular set of genomic variations: we find the concept of ‘the human genome’ to lack coherence in any case.” 


What is morally important about human beings is not a topic which the report discusses in any great detail.



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

comments powered by Disqus
 

 Search BioEdge

 Subscribe to BioEdge newsletter
rss Subscribe to BioEdge RSS feed


 Recent Posts
US Senator discovers that she is at least 1/1024 Native American
21 Oct 2018
Win for conscientious objection in Norway
21 Oct 2018
Stephen Hawking, transhumanist
21 Oct 2018
Queensland decriminalises abortion
21 Oct 2018
Harvard calls for retraction of dozens of studies by stem cell researcher
20 Oct 2018

Home | About Us | Contact Us | rss RSS | Archive | Bookmark and Share | michael@bioedge.org

BioEdge - New Media Foundation Ltd © 2004 - 2009 All rights reserved -- Powered by Encyclomedia