September
17
 

First interdisciplinary study of Belgian euthanasia published

A book from Cambridge University Press to be released next week takes a critical look at euthanasia in Belgium. Euthanasia and Assisted Suicide: Lessons from Belgium features essays on legal, philosophical and medical issues, as well as how euthanasia affects vulnerable populations, with a number of authors from Belgium and the UK.

The editors, David Albert Jones, of the Anscombe Bioethics Centre, Oxford; Chris Gastmans, of the Faculty of Medicine at KU Leuven in  Belgium; and Calum MacKellar, of the Scottish Council on Human Bioethics, say that the volume is the first interdisciplinary study of Belgian euthanasia. The authors point out that

  • The system is not transparent. Just 16 members of a euthanasia commission are supposed to oversee thousands of euthanasia cases.
  • The system relies on self-reporting. Of the thousands of reported cases, only one has been referrrd to a public prosecutor and it is estimated that only half of all cases are even reported.
  • Since legalisation in 2002, euthanasia has been “normalised”, with more and more cases of life-ending without request.
  • A leading palliative care doctor who is sympathetic to euthanasia warned in 2013 that “once the barrier of legalistation is passed, [euthanasia] tends to develop a dynamic of its own and extend beyond agreed restrictions”.
  • “Continuous deep sedation” is increasingly being used as a means of euthanasia.

They conclude:

“Death by euthanasia in Belgium is, generally, no longer regarded as an exception requiring special justification. Instead, it is often regarded as a normal death and a benefit not to be restricted to without special justification.”   

In a sense, Belgium is a special case, where there is very little opposition to the continuing expansion of eligibility for euthanasia and very little scepticism about how it is administered. In the United States, on the other hand, opponents are vocal and watchful where assisted suicide is legal. This proves to be a barrier to the inexorable bracket creep that Belgium is experiencing. However, the authors’ final advice is that:

... the only secure way to avoid these consequences is to resist calls to legalise euthanasia or assisted suicide and instead invest in palliative care as well as research into end-of-life practices while re-emphasising the preciousness of human life.”



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September
17
 

Only 2 children euthanised in 3 years in Belgium

The news that the Belgian parliament had legalised euthanasia for children under 18 made news around the world in 2014. But what has actually happened since then?

According to the chairman of the Belgian euthanasia commission, Dr Wim Distelmans, only two children have been euthanised, both in or after 2016. "The situation is similar to the situation in the Netherlands, where five cases have been recorded in ten years,” he says. “We have only had two cases in three years.”

"We knew that there wouldn’t be many," says Professor Distelmans. "Some 100,000 adults die every year in Belgium for every 1,000 minors. When it is known that 2,000 deaths in adults are the result of euthanasia, there couldn’t be many among minors. Children can only apply when they are terminally ill, while euthanasia is possible for adults even if they aren’t terminally ill patients."



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September
17
 

R-rated short promotes ‘assisted dying’ in Australia

An R-rated snuff movie is an original way to promote euthanasia. But it is the marketing tactic being used by Go Gentle Australia, an assisted dying lobby group headed by media personality Andrew Denton.

"Stop The Horror is a short, five-minute film dealing with unimaginable pain and despair," a Go Gentle spokesperson told The Age. "It has been designed to be virtually unwatchable. The film confronts viewers with a harrowing retelling of the true events surrounding one man's traumatic death. The film is so confronting it has a stop button on screen so viewers can bail out whenever they want."

Go Gentle claims that the film is so graphic that it has been banned by YouTube and can only be viewed on its own website. If this is true, YouTube is not very vigilant, because it can be seen here.

However, there is no doubt that it is emotionally harrowing. The director is Justin Kurzel, whose major success was the Snowtown, a 2011 film about serial killers in Adelaide, which was described as an “unwatchably violent film”.

“Stop the Horror” purports to be a factual recreation of the last days of 56-year-old Greg Sims, who died of brain cancer in 2005. The distress of his relatives is as hard to watch as his own convulsions and pain.

The film is part of a sophisticated campaign to influence politicians in the state of Victoria, who will probably be debating “assisted dying” in Parliament in October.

"To show this person dying without having any comment from doctors who specialise in this sort of thing is really dishonest, isn't it?" commented Margaret Tighe, of Right to Life Australia. "The bottom line in all of this is that you shouldn't change the law to give a small percentage of people in the community the right to have their lives ended because you're changing dramatically the laws around homicide. We live in communities where you're not allowed to kill people."



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September
16
 

BFF of Selena Gomez donates kidney

American pop singer Selena Gomez received a kidney transplant from her best friend, she revealed this week. Ms Gomez, 25, suffers from lupus and the disease was attacking her kidneys. TV actress Francia Raisa, 29, volunteered to donate hers. She wrote on Instagram that “there aren’t words to describe” how she can thank Raisa, who gave “the ultimate gift and sacrifice by donating her kidney.”

Photos were released on Instagram of the two women side by side in hospital and of Ms Gomez displaying a very large scar on her abdomen.

Despite the public relations frenzy, very little information has been released about the procedure. Whether Ms Raisa had been remunerated for the donation or what else might have motivated her donation is unknown. However, Ms Raisa’s mother, Virginia Almendarez, told the media that the actress did it just so that “Selena could have a better life” and that “not even a single penny” was exchanged. 



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September
16
 

Let’s make surrogacy professional

Some surrogate mothers in California / Surrogate Alternatives

Two New Zealand academics have proposed a new model for handling surrogacy. At the moment, where surrogacy is allowed at all, it is either a private commercial transaction or an unpaid altruistic gesture. Liezl van Zyl and Ruth Walker, of the University of Waikato, have proposed a government-regulated system.

They want to see surrogacy move to a professional standing, legally regulated and with greater protection for intended parents, the planned baby, and the surrogate mother. It would not be about building a career, but recognizing the surrogate’s caring motives, and compensating her for her work.

“The Government needs to look at the current way of handling things,” says Dr Walker. “It is not in babies’ best interests, and there is no security for surrogates or intended parents.”

The two academics suggest in their new book, Towards a Professional Model of Surrogate Motherhood, that governments establish a kind of “Department of Surrogacy”. This new agency would ensure that demands made on the surrogate are reasonable; counselling is provided; the child has the right to have a relationship with the surrogate; and that the government sets the fee for the surrogacy. 



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September
16
 

American Nurses Association endorses VSED

Many patients require artificial nutrition and hydration (ANH) at the end of life. But what should medical staff do when a patient seeks to hasten death by having ANH withdrawn? Despite the ethical complexities of the situation, medical guidelines are vague and, in some cases, non-existent.

But the American Nurses Association has issued a new position statement that categorically endorses “voluntary stopping of eating and drinking” (VSED). In the statement, the ANA asserts that “VSED at the end of life is used to hasten death, and is a reflection of autonomy and the patient’s desire for control.” According to the Association, a patient’s decision to begin VSED should be respected by the nurses, as “patients who are at the end of life likely have reasons for stopping nutrition and hydration”. The Statement continues:

“[Reasons for VSED may include] physiologic causes that lead to loss of appetite and/or the inability to eat. Some people who choose VSED may not be imminently dying. Psychological, spiritual or existential suffering, as well as physical suffering, can lead to patient requests for hastened death.”

Nurses are instructed to continue “to ensure the provision of high quality care, minimizing discomfort and promoting dignity”.

Oxford University bioethicist Julian Savulescu penned a controversial article in 2013 that proposed VSED as an “ethical and legal alternative” to euthanasia in jurisdictions where euthanasia is still prohibited. The ANA guidelines are an endorsement of this suggestion.



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.

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September
16
 

Wesley Smith on “justice for Jahi”

The legal dispute over Jahi McMath -- a 13-year-old American girl alleged to be brain dead -- has received renewed attention after a Californian judge ruled she may in fact be alive. A county jury will soon hear new evidence that McMath is healthy, undergoing puberty, and is responsive to oral communication, despite her severe neurological impairment.

This week bioethicist Wesley J Smith weighed into the debate, calling for “Justice for Jahi”. Smith writes that has visited McMath in hospital, and feels there is evidence to suggest that she no longer meets the criteria for brain death. According to Smith, McMath appears to respond to requests from her mother to move her fingers, and video evidence suggests the girl is capable of other autonomous motory operations.

Smith called for a comprehensive expert review of McMath’s neurological state:

“I hope that several prominent neurologists without a stake in the situation will step forward and volunteer to examine Jahi—and not just for a day or two but over an extended period of time, to test her brain and body functions thoroughly and determine whether she does indeed respond to requests. Then, if she lacks even one criterion for brain death, Jahi’s California death certificate should be revoked—let the chips fall where they may.”

Regarding the relatively limited bioethical coverage of the McMath case, Smith remarked:

“I am stunned that the medical and bioethics communities generally show such a pronounced lack of curiosity about Jahi’s situation...Perhaps it is just a case of “experts” not wanting to know—because if Jahi isn’t dead, it would have epochal legal, social, medical, and scientific ramifications. But so what? Jahi deserves justice. If alive, she is a full and equal member of the moral community.”


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September
16
 

Oxford researchers accused of giving babies unsafe TB drug

A team of Oxford University researchers have been accused of deception and misconduct during a large-scale tuberculosis trial on African infants that began in 2009.

Professor Peter Beverley, a former senior academic at Oxford, told the BBC that scientists tested a new tuberculosis vaccine on more than a thousand infants without sharing data suggesting that monkeys given the immunisation “die rapidly”.

According to Beverley, the new vaccine, known as MVA85A, was trialled on six monkeys 10 months before a funding application was made for the clinical trial on over 2,800 babies near Cape Town, South Africa.

The preclinical monkey trial involved over a dozen monkeys who had been infected with TB. One group was given the widely used Bacillus Calmette-Guérin (BCG) jab (a standard immunisation), the second was given no immunisation and a third was given BCG plus new vaccine. By the time the human trials began, five out of six of those that received the BCG jab and the new booster vaccine together had to be put down, while just two out of the six monkeys who received only the BCG injection had died.

Despite this, an information sheet given to families in South Africa participating in the trial said the vaccine had been tested on animals and humans and was “safe and effective” in animals.  

An inquiry at the University found that there had been no wrongdoing, though the report stated that it “would have been good practice for the potentially adverse reaction observed in the monkey experiment to be reported to the authorities in a more timely fashion.”



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.

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September
09
 

Planned Parenthood wins prestigious Lasker Award

Planned Parenthood, the world-wide foundation for promoting reproductive health care and sex education, has won the 2017 Lasker~Bloomberg Public Service Award. According to the Lasker Foundation,

Without Planned Parenthood, many individuals would not have access to high-quality and affordable health care. Although the organization is most famous for aiding women, it helps men as well. In 2015, its almost 650 U.S. health care centers served 2.4 million people.

The prestige of the Lasker Awards is so great that they are regarded as warm-ups for the Nobel Prize. So Planned Parenthood could be in the running for a Nobel Prize in Medicine or for Peace. The award is a poke in the eye for Republicans who have called for Federal funds to Planned Parenthood to be slashed. President Trump has vowed to defund Planned Parenthood as part of a health care plan overturning Obamacare. Federal grants make up about 40% of Planned Parenthood’s budget.

The Lasker Foundation’s link to Planned Parenthood goes back 80 years, when Mary Lasker, the second wife of philanthropist and advertisting guru Albert Lasker, made a donation to Margaret Sanger’s American Birth Control League and later joined its board. It was Albert Lasker who suggested that the organisation’s name be changed to make it more acceptable to the American public.

In the information accompanying the award, the Lasker Foundation praised “Planned Parenthood’s crucial role in the U.S. medical care system” and cited its numerous backers, including the American Medical Association, the American Congress of Obstetricians and Gynecologists, and the American Public Health Association. However, it failed to mention anything about the allegations of sales of foetal body parts which kept Planned Parenthood on the front page of world newspapers for weeks in 2016. 



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September
09
 

Is fear of being a burden a good reason for assisted suicide?

In Oregon, 48.9% of patients who ended their lives under the state’s assisted suicide act said that fear of being a burden was one of their reasons. We should be very worried by this, argues Charles Foster, a British medical ethicist, in the blog Practical Ethics.

Concern about being a burden should not be a criterion justifying assisted dying. That ‘being a burden’ is in the minds of so many patients at the end of life is a depressing index of the breakdown of familial obligations and expectations in the western world. It would have been unthinkable in most cultures and at most historical times. It is an artefact of an atomistic view of the self which is biological gibberish and sociological poison. We are not islands. We were all dependent as foetuses and children, and are dependent now on other road-users, pilots, doctors, genes, and the weather. No system of law or ethics that relies on a caricature of basic realities is likely to produce good results.

Foster goes on to argue that “The law should be framed in such a way as to encourage the attitudes in families and carers that make impossible the feeling ‘I’m a burden’.”

He points out that shuffling off the mortal coil for the sake of the family might seem commendably altruistic – a bit like Oates telling his comrades on Scott’s ill-starred expedition to the South Pole, “I am just going outside and may be some time”. But, says Foster, “This is a bad argument. It sets the distress of a few above the welfare of many, and above the ethical health of a society.”

He concludes with the thought that this might undermine the case for assisted suicide altogether:

And one might think, given the very high incidence of this reason in the reports of patients’ reasons for seeking assisted dying, and the possibility that it is a contributory factor in the minds of those patients who cite other primary reasons for seeking death, that this consideration is an argument against assisted dying per se.



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September
09
 

Russian babies swapped at birth

Zoya's daughters Lucia (L) and Ekaterina. Picture: Zoya Tuganova

The theme of babies swapped at birth is probably more common in literature like the Gilbert and Sullivan operetta HMS Pinafore and Mark Twain’s novel The Tragedy of Pudd'nhead Wilson than it is in real life. But it happens, always raising heart-breaking issues of nature vs nurture, maternal attachment, and the need to find biological parents. 

The latest tragedy, as reported in the Siberian Times, comes from the central Russian city of Chelyabinsk. In 1987 two women gave birth to daughters in a maternity ward: a Russian, Zoya Tuganova, and a Bashkir (a Turkic people) Elvira Tuligenova. The biological daughter of Zoya was fair and well-built; the biological daughter of Elvira was dark and frail. But the babies were swapped. Zoya sensed that something was amiss and screamed in protest. But the doctors insisted and she submitted.

The story unfolded like a soap opera. Zoya took home a daughter, Katya, who was raised as an Orthodox and eventually went to university. Elvira took home Luciya, who was raised as a devout Muslim. Her appearance was so different to her parents that her father was mocked as a cuckold. He got into a fight over this and ended up knifing a man to death. He went to jail and the once-prosperous family fell apart. Elvira drank herself to death. After wandering the streets with two siblings begging for food Zoya was placed in an orphanage. Now she has three children of her own and lives on welfare.

Katya was the detective who untangled this story and put Zoya in touch with her biological daughter Luciya. “Moral compensation for what happened should be paid to my mom and Luciya,” Katya told the press. “Thank God, I am fine. It should also be discussed why the children were not given decent accommodation after leaving the orphanage as foreseen by law. Beyond any doubt everyone involved in this outrageous situation should be punished.” 



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September
09
 

US jails: doctors should support compassionate release, say ethicists

Compassion release of prisoners who are suffering from terminal illnesses or dementia is a controversial topic in the United States. Voters worry about the crimes prisoners might commit; victims seethe at the thought of a guilty man walking the streets.

The current issue of the AMA Journal of Ethics contains several features about healthcare during incarceration – an important issue for a country with 2.1 million prisoners. One of the articles contends that “given the importance in medical ethics of upholding dignity, physicians should advocate for the appropriate application and use of compassionate release”.

In fact, compassionate release is rare in the US. More than 4,000 people died in jails and state prisons annually between 2003 and 2011, mostly of heart disease and cancer. The prison population is ageing, with prisoners aged 55 and over rising from 3% in 1993 to 10% in 2013. Palliative care facilities exist in only 69 of 1,719 state correctional facilities. But of 2,621 requests lodged with the Federal Bureau of Prisons, only 85 were granted.

The authors of the article focus, however, not on the practical issues, but on the prisoners’ human dignity.

Upholding human dignity—the inherent value or “inner worth” of every person—is a core ethical principle. Each person has dignity, which is not subject to circumstance and persists regardless of the situational context in which a person may find himself, including incarceration ...

A correctional facility that cannot achieve a patient-centered environment, in which dignity-conserving practices are integrated into care, might not meet an appropriate ethical standard of care for the seriously ill. Compassionate release offers a mechanism to shift those patients to settings that can provide appropriate care.

The cause of compassionate release will probably never have star billing at the top of human rights causes, especially in the United States. But as the authors argue, doctors “have obligations to advocate for policy changes when they observe patient dignity being undermined in specific circumstances, such as incarceration.” 



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September
09
 

Survey: most Americans support editing the human genome

In early August 2017, an international team of scientists announced they had successfully edited the DNA of human embryos. A survey published in the journal Science found that about two-thirds of American respondents expressed at least some support for therapeutic editing, but only one-third using the technology for enhancement.

The authors looked into public attitudes about gene editing on specific cell types -- somatic or germline -- either for therapy or enhancement. Somatic cells are non-reproductive, so edits made in those cells do not affect future generations. Germline cells, however, are heritable, and changes made in these cells would be passed on to children.

Public support of therapeutic editing was high both in cells that would be inherited and those that would not, with 65 percent of respondents supporting therapy in germline cells and 64 percent supporting therapy in somatic cells.

When considering enhancement editing, however, support depended more upon whether the changes would affect future generations. Only 26 percent of people surveyed supported enhancement editing in heritable germline cells and 39 percent supported enhancement of somatic cells that would not be passed on to children.

"A majority of people are saying that germline enhancement is where the technology crosses that invisible line and becomes unacceptable," says author Dietram A. Scheufele. "When it comes to therapy, the public is more open, and that may partly be reflective of how severe some of those genetically inherited diseases are. The potential treatments for those diseases are something the public at least is willing to consider."

Beyond questions of support, researchers also wanted to understand what was driving public opinions. They identified two factors: the level of religious guidance in their lives and factual knowledge about the technology.

Those with a high level of religious guidance in their daily lives had lower support for human genome editing than those with low religious guidance. Additionally, those with high knowledge of the technology were more supportive of it than those with less knowledge.

"The public may be split along lines of religiosity or knowledge with regard to what they think about the technology and scientific community, but they are united in the idea that this is an issue that requires public involvement," says Scheufele. "Our findings show very nicely that the public is ready for these discussions and that the time to have the discussions is now, before the science is fully ready and while we have time to carefully think through different options regarding how we want to move forward."



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September
09
 

Assisted suicide push fails in New York

A New York Court has rejected a petition by three terminally ill patients to be allowed access to assisted suicide drugs.

The Court of Appeals made its ruling on Thursday after a protracted legal battle during which two of the plaintiffs passed away.

“The [New York] assisted suicide statutes apply to anyone who assists an attempted or completed suicide,” the court wrote in its unanimous decision. “There are no exceptions.”

Assisted suicide and euthanasia are currently illegal in New York, but the plaintiffs had argued that the law should not apply to those seeking merciful ends to incurable illnesses.

“We are very disappointed by the court’s decision,” said Edwin Schallert, a lawyer for the patients and doctors who brought the lawsuit. “It will prevent terminally ill New Yorkers from exercising an important option to achieve a peaceful death.”

Opponents of assisted suicide praised the Court's ruling. 

"The decision is a significant victory for those who would be most at risk of abuse and most susceptible to pressure to take their own lives, including the isolated elderly, persons with disabilities and those who are depressed and overcome with hopelessness," said Kathleen Gallagher of the New York State Catholic Conference.

Assisted suicide and/or euthanasia is currently legal in six US States as well as the District of Columbia. 



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.

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September
09
 

Is Jahi McMath alive?

A legal battle over an allegedly brain-dead American teenager is set to continue, with a Californian judge ruling that girl may in fact be alive.

Alameda County Judge Stephen Pulido ruled Tuesday that it's up to a jury to determine whether Jahi McMath is still living. The judge had heard evidence from medical experts and viewed video footage that suggested that girl was still minimally conscious, despite adamant testimony from other specialists who say she meets all the relevant criteria of brain death.

In December 2013 13-year-old McMath suffered massive blood loss, cardiac arrest and severe oxygen deprivation following a routine tonsillectomy performed at Children’s Hospital Oakland. The girl was deemed brain dead by doctors and her parents were told that life-support would be withdrawn. The parents disagreed and commenced legal action against the hospital. The case has been heard by several courts over the past three years.

If the California jury rules in favour of McMath’s parents, this would significantly increase the damages that could be awarded for the botched operation.

Bioethicist Thaddeus Mason Pope has called for “clear and precise language” in the broader ethical debate:

“…it is not logical to say that Jahi was correctly determined dead in 2013 and is now alive.  If she does not now meet the prevailing medical criteria for brain death, then she did not really ever meet the legal definition of death in 2013… That apparently means there is something deficient about the way we measure brain death.” 


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.

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September
09
 

First anti-ageing drugs ready for trial

Scientists may soon trial a new class of drugs that specifically aim to delay or treat ageing.

Writing in the Journal of American Geriatrics this week, doctors from the Mayo Clinic and Scripps Research Institute outline a set of new clinical trial paradigms that could be used to test the efficacy and safety of “Senolytics”, a new class of drugs that target mechanisms in the ageing process.

Senolytics target a process known as “cell senescence”, in which moribund cells begin to accumulate in different parts of the body and (in some cases) disrupt the functioning of healthy cells. Senescence is associated with failing heart health, osteoporosis, general run-of-the-mill frailty, and even cancer.

Senolytic drugs trigger a specific gene that leads cells to die a normal death and prevents them from interfering with other cell functions.

“This is one of the most exciting fields in all of medicine or science at the moment,” said Dr. James Kirkland, director of the Kogod Center on Aging at the Mayo Clinic and lead author of the new paper.

The researchers argue that the new drugs “could transform geriatric medicine by enabling prevention or treatment of multiple diseases and functional deficits in parallel, instead of one at a time”.

“I think senolytic drugs have a great future. If it is proven that it can reduce senescent cells and rejuvenate tissues or organs, it may be one of our potential best treatments for age-related diseases,” said Dr. Kang Zhang, founding director of the Institute for Genomic Medicine at the University of California, San Diego, who was not involved in the new paper.

It still remains to be shown, however, whether Senolytics can have the same effects in
humans as the have had in mice. “We will have to wait for clinical trials to
see whether this would work in humans”, Zhang said.



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September
09
 

Compromise on APA torture paper

A controversial paper on the American Psychological Association’s involvement in post-9/11 torture has been republished in the journal Teaching of Psychology – just one month after it was retracted by the journal’s editors.

The paper, written by University of Colorado Denver psychologist Mitchell M. Handelsman, summarises the findings of the 2015 Hoffman Report – an independent review that found that the APA had tacitly endorsed the involvement of military psychologists in Guantanamo Bay torture – and offers suggestions on how the APA torture scandal can be used to teach ethics to psychology students.

The paper considers how the alleged collusion between APA officials and the Department of Defense might be used to illustrate numerous psychological concepts for students including obedience, groupthink, terror management theory, group influence, and motivation.

In June, De Paul University psychologist Gerry Koocher – a former president of the APA who is mentioned in the Hoffman report – complained to the editors of the journal that the paper was one-sided and did not mention an ongoing defamation suit against Hoffman and the APA.

The editors immediately retracted the paper.

But the paper has now been republished, with an editorial note that explains the broader context of the discussion and calls on readers to monitor developments in the ongoing lawsuit. 



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.

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September
02
 

Landmark stem cell paper questioned

Oh no! Not again! Such must be the sentiments of stem cell scientists after a paper to be published in Nature cast cold water on landmark research about editing the genome of a human embryo.

On August 2, a team led by Shoukhrat Mitalipov, of Oregon Health and Science University, announced in Nature that they had successfully deleted a disease-causing faulty gene and replaced it with a healthy copy using the CRISPR-Cas9 technique. Their innovative experiment introduced the CRISPR machinery earlier. When they examined the embryos, they found that they did not contain the faulty sequence.

This discovery was greeted around the world as a first step towards freeing mankind from genetic disorders – or towards a eugenicist society, depending on your attitude towards modifying the human genome. Technically, it was a tour de force, as it was relatively easy and accurate and did not result in mosaic embryos.

With 10,000 harmful single-gene mutations known, there is a lot at stake.

However, a closer examination of the exciting paper has sparked a lot of debate amongst stem cell scientists. In a preprint release of a paper in Nature on bioRxiv, Dieter Egli, of Columbia University, and Maria Jasin, of Memorial Sloan Kettering Cancer Center, along with Harvard geneticist George Church, have questioned whether Mitalipov’s team has actually succeeded, as the new technique contradicts the conventional wisdom about how fertilisation occurs. They point out that although the disease-causing gene had disappeared, there was no proof that the correct sequence had been inserted.

Furthermore, the DNA from the sperm and the egg are probably not close enough in the brief interval after fertilisation to interact or share genes. Mitalipov and his team had speculated that the embryos used the DNA of the egg as a guide to repair the mutation carried by the sperm.

“In my view Egli et al. convincingly provided a series of compelling arguments explaining that the correction of the deleterious mutation by self repair is unlikely to have occurred,” Gaétan Burgio, a geneticist at the Australian National University told Nature News.

Mitalipov has responded, promising to answer the “critiques point by point in the form of a formal peer-reviewed response in a matter of weeks.” 

Inevitably, this latest “breakthrough” recalls a string of too-good-to-be true-and too-amazing-to-reject articles about stem cell research. They were published in leading journals, hyped in the media and then crashed and burned. Time will tell whether Mitalipov’s paper will be vindicated. 



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September
02
 

Nurse may have killed at least 90 in German nursing homes

Niels Högel / EuroNews  

A male nurse may have killed scores of patients in nursing homes in northern Germany. Niels Högel was given a life sentence in 2015 after he confessed to the murders of about 30 people at two clinics. Even at the time police suspected that he was responsible for more deaths.

Evidence for these has emerged now after they exhumed and examined 134 bodies. It appears that Högel had given a number of them a lethal injection. Although the total will never be known, as a number of patients were cremated, it appears that he killed at least 90. This makes him the worst serial killer in Germany’s criminal history.  

Police Chief Johann Kühme said that he was speechless. "And as if all that were not enough, we must realize that the real dimension of the killings by Högel is likely many times worse." 

Högel will be tried again for the newly-discovered murders.

Several senior medical staff at one of the clinics are also facing manslaughter charges for neglecting to investigate the high number of suspicious deaths when Högel was on duty. Investigations are continuing at the other clinic. 



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September
02
 

If this is fatherhood, well, I’m a Dutchman

Ed Houben with relationships / RTL News  

The 18th Century adventurer Giacomo Casanova measured his virility by the number of women he had seduced. After the reproductive revolution, his epigones benchmark theirs by the number of offspring produced from their sperm. In the headlines in the week before Father’s Day are two Dutchmen who have sired over 100 children.

One anonymous man who donated to 11 IVF clinics in the Netherlands is responsible for 102 children – even though Dutch law bans donation at more than one clinic and limits the number of children to 25. In another case, a man donated to two clinics, fathering two children. The Dutch gynecologists association NVOG asked the clinics to stop using the men’s sperm immediately.

There is no central sperm donor registry in the Netherlands, so IVF clinics do not know if men have donated elsewhere. The NVOG was tipped off by a group of single mothers, who also suspect that the two men may have fathered many other children using the more traditional method.

The best known proponent of this is a 47-year-old teacher named Ed Houben, who is featured in RTL News. Once he reached the maximum number of donations through a clinic, he advertised his services as a sperm donor or as a stud. He regards helping desperate women to become pregnant as an altruistic gesture. Women contact him from all over the world, he says. So far he believes that he has sired 114 children.



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September
02
 

HMS Bioethics Journal launched

Harvard Medical School has published the inaugural issue of a bioethics journal, called – wait for it! --- Bioethics Journal. The editorial team explains:

Our goals in publishing the Bioethics Journal are to recognize and anticipate the ethical aspects of new bioscientific knowledge; to report bioethics research, as well as what is empirically known about ethical problems and alternatives for addressing them; to offer ethical analyses and recommendations; and, most importantly, to provide an open and free forum for professional and public discussion about the ethical challenges of our time.

The official name of the journal is Harvard Medical School Bioethics Journal.

The lead article in the first issue is a feature on immigration, “Keeping the Doors Open: Why should the United States remain open to refugees?” Other topics include precision medicine, an ethics consult about a woman who refuses a C-section, and the use of algorithms to prioritize patients. It’s a nice mix of scholarship and journalism. Check it out



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September
02
 

Study fails to discount link between fertility treatment and cardiovascular disease

The authors of the first meta-study of links between fertility treatment and cardiovascular disease have called for more research after concluding that “The longer term cardiovascular effects of fertility therapy are unknown”. In an article in the Journal of the American College of Cardiology researchers from McGill University in Montreal reported said there are “ongoing knowledge gaps to inform the longer term CV risk or safety of fertility therapy”.

Part of the problem is that the authors of the study could only identify six studies – which involved 40,000 women – of the risk of CV events after fertility treatment.

An accompanying editorial pointed out that more and more older women are seeking fertility treatment – which raises the risk of stroke or heart disease. 



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September
02
 

Are ‘brain dead’ patients really dead?

A new article in the Journal of Medical Ethics challenges conventional accounts of human death, and calls for a “new consensus” on the ethics of vital organ transplantation.

Bioethicists Michael Nair-Collins, of Florida State University College, and Frank Miller, of Weill Cornell Medical College, assert that patients who are brain dead may nevertheless be said to have retained the integrated functioning characteristic of human life. This is the case even when the patient is supposedly “dependent” on a ventilator.

The authors observe that that mechanical interventions (such as a ventilator) do not in and of themselves allow for the functioning of the lungs and heart -- other natural bodily operations play and equally important causal role:

“The ventilator does not cause the heart to beat. The ventilator does not cause gas exchange. The ventilator does not trigger the actions of the other organs. And the ventilator certainly does not cause the coordination of activity between the different organs. It blows air in and out; the living organism does all the rest.”

The corollary to this is that the ethical justification for organ procurement from brain dead patients is undercut.

“The science underlying the claim that the ‘brain dead’ are biologically dead organisms is weak and fundamentally flawed. Since the accepted ethical rationale for vital organ procurement from ‘brain dead’ patients relies on the validity of the neurological standard for determining death, the accepted ethical rationale is undermined as well.”  

The authors suggest that “a new consensus” must be reached on the ethics of vital organ transplantation -- “one which is not premised on demonstrably false claims about the vital status of biologically living patients”.

The provocative paper echoes claims made elsewhere about the invalidity of current justifications of brain death. It will be interesting to see how the bioethics community reacts to the growing clamour against conventional accounts of organismal death. 



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.

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September
02
 

“Vulnerable populations”: a necessary concept in research ethics?

How important is the label “vulnerable populations” in research ethics?

“Vulnerable populations” are groups of individuals who in one or more ways are at risk of harm through research; research ethics committees often use the term to identify groups that are at risk in particular research projects.

In recent years scholars have criticised the use of this term, as it lacks a sensitivity to contextual factors that impact on the vulnerability of individuals -- pregnant women, for example, may be more or less vulnerable depending on the stage of gestation or the presence of illness, and minority groups can differ in their susceptibility to exploitation or manipulation.

But some commentators are defending the use of “vulnerability” in research ethics.

National University of Singapore sociologist Adrian Kwek argues that we need the label of vulnerability to reason through difficult ethical problems in bioethics. Writing in the journal Bioethics, Kwek suggests that where principlism and casuistry fail to provide uncontroversial ethical conclusions, reference to vulnerable populations can provide a way of resolving relevant bioethical quandaries: “labelled groups as exemplars of vulnerability can play indispensable roles in bioethical reasoning”. Kwek states:

“The pair of reasoning methods that has received much attention in bioethics – specified principlism and casuistry – can leave gaps that require intuitive balancing. Labelled groups as exemplars of vulnerability can plug some of these gaps. The contribution is both practical in helping to arrive at morally nuanced judgments and theoretical in providing a further provisionally stable point of discursive justification where specified norms conflict or where paradigm cases are underdetermined.”

Duquesne University bioethicist Henk Ten Have gone so far as to argue that vulnerability should be introduced as a new principle in biomedical ethics. In a 2015 article in Bioethical Inquiry, Ten Have argued that bioethics should begin by considering the fact of human vulnerability -- the fragility and weakness characteristic of the human condition -- and develop ethical procedures based on this fundamental observation.



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.

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September
02
 

The ethical imperative for AI researchers

How can we stop AI robots from becoming killing machines? Ethicists are offering various answers.

One option is to ensure that AI robots are trained by scientists to make the right decisions in complex ethical scenarios. Where an autonomous machine is confronted with a difficult situation -- on the road, in the air, or in our homes and hospitals -- it could be “taught” by human beings to choose the right course of action.

Just as researchers have trained an AI system to play Pong and Space Invaders, so too could scientists train self-driving cars in how to handle “trolley-cart” problems. Researchers from MIT have set up a website to poll audience intuitions on ethical problems for self-driving cars, with a view to building the audience’s views into the software of vehicles.

Similarly, two US-based scholars have recently argued that the doctrine of double effect should be built into the computational system of autonomous machines.

Yet perhaps we need to do more to fully address the problem.

One scholar, Australian computational scientist James Harland, argued in The Conversation this week that machine learning researchers should receive formal training in moral philosophy.

“As in most areas of science, acquiring the necessary depth to make contributions to the world’s knowledge requires focusing on a specific topic. Often researchers are experts in relatively narrow areas, and may lack any formal training in ethics or moral reasoning. It is precisely this kind of reasoning that is increasingly required”. 


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.

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September
02
 

Another anti-vaxxer barred from entering Australia

A prominent American anti-vaccination campaigner has been barred from entering Australia, after immigration minister Peter Dutton deemed his views to be against “national interests”.

Mr Dutton believes that Kent Heckenlively -- who describes himself as the “world’s no.1 anti-vaxxer” -- will undermine the new federal government A$5.5 million vaccination education campaign, aimed at dispelling myths about the risks of vaccination. Dutton commented:

"These people who are telling kids, telling parents that their kids shouldn't be vaccinated are dangerous people …  it is clear to me that it is not in our national interest that [Heckenlively] should come here.”

Mr Heckenlively has authored multiple books on the dangers of vaccination, and has links to discredited anti-vaccination scientist Andrew Wakefield.

Two other anti-vaccination campaigners, Polly Tommey, from the UK, and Dr Suzanne Humphries, from the US, have been reportedly banned from returning to Australia after organising screenings of the controversial film Vaxxed: From Cover-Up to Catastrophe.



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.

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August
26
 

How much have we done for ‘the world’s largest humanitarian crisis’?

Here’s what the United Nations has to say about Yemen, which is in the grip of a civil war between Iran-backed Houthi rebels and the Saudi-backed government, with ISIS and al-Qaeda doing their best to add chaos to the chaos:

“This is the world’s worst cholera outbreak in the midst of the world’s largest humanitarian crisis. In the last three months alone, 400,000 cases of suspected cholera and nearly 1900 associated deaths have been recorded. Vital health, water and sanitation facilities have been crippled by more than two years of hostilities, and created the ideal conditions for diseases to spread.

“The country is on the brink of famine, with over 60 per cent of the population not knowing where their next meal will come from. Nearly 2 million Yemeni children are acutely malnourished. Malnutrition makes them more susceptible to cholera; diseases create more malnutrition. A vicious combination.”

The Lancet’s editorial for World Humanitarian Day, on August 19, decried the inability of the world community to quench the cholera outbreak. “As a collective humanity, the shame is ours to bear.” It argues that this tragedy could have been avoided:

Cholera has been ravaging communities for two centuries. Yet in 2017, outbreaks are entirely containable early with coordinated efforts to implement water, sanitation, and medical rehydration treatment. There is a vaccine and antibiotics exist...

Containing the cholera crisis and reinstating health and personal security for 27 million Yemeni people is the high stakes sustainable development test for how humanity can and will organise around vocalised commitments to protect the most vulnerable among us today.



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August
26
 

Tandem IVF: anything to guarantee a baby

IVF clinics are always looking for a competitive advantage. “Tandem IVF” seems to be the latest suite of techniques to attract older women with low fertility to the clinics.

In many countries it would be banned, but where IVF is relatively unregulated some clinics offer this option even though it has a number of ethical complications.  

The technique works like this. In treating a woman over 40, most clinics would first try to achieve a pregnancy using her own eggs. If this fails, they would offer the option of donor eggs. Clinics offering tandem IVF are able to offer a much cheaper service by combining the two procedures. One or more embryos created with the older woman’s eggs are combined with embryos created with a donor’s eggs. In this way, even if the mother’s embryos do not survive, the donor’s will. The rate of success will be much higher.

Two optional services are offered by some clinics in conjunction with tandem IVF.

First, “cytoplasmic tandem IVF”: the nucleus of the mother’s egg is injected into an enucleated donor egg to rejuvenate it. This has been banned in the United States by the Food and Drug Administration.  

Second, foetal reduction. If all of the implanted embryos implant and develop, there could be a problem. The mother might only want the baby from her own embryo. If this is the case, as a back-up plan, some clinics offer to abort the baby, or babies, created with donor eggs. Ethically, this is an extremely controversial way of dealing with the issue of multiple births. 

An internet search came up with several clinics around the world which offer tandem IVF: IVF Mexico, IVF Spain, the Malpani Infertility Clinic in Mumbai, India; EmBio Medical Centre in Greece; and several clinics in the Turkish Republic of Northern Cyprus.

Judging from the clinics’ websites, it is in Cyprus that tandem IVF seems to be most developed. We requested information from two of the clinics, but neither replied. One clinic’s website says that tandem IVF has become a “popular method”, although BioEdge was unable to get any figures.

The website of the British Cyprus IVF Hospital explains how foetal reduction works:

Reduction is performed in week 11-12 of pregnancy not sooner or later. The mother’s womb is entered with a needle, assisted by an ultrasound; potassium chloride is injected into one or two of the weakest foetus` to stop the heartbeat. The aim of this intervention is to leave one or at most two healthy babies in the womb to carry to a healthy and full term pregnancy.

North Cyprus IVF Clinic proudly announces on its website that it offers “’outside the box’ treatment options”, including "Cytoplasmic Tandem IVF". It explains:

we not only improve your chances of IVF success using your own eggs, but we also allow you to fertilize the rest of the donor eggs (the ones that are not used for their cytoplasm) with your partner's sperm sample. The embryos created by donor eggs can be frozen and preserved for a future date in case your treatment cycle fails and you decide to use donor eggs in the future. This way, you can have an IVF treatment where your personal success likelihood is maximized using your own eggs and where you are also given a back-up plan with donor eggs in a future IVF cycle should things don't work out as planned - All for a single cost of treatment!

Northern Cyprus seems to offer an excellent setting for experimental techniques like tandem IVF. Government regulation is light. The doctors speak English; some have been trained in Britain; and, Turkey, where most of them were educated, has a large IVF industry. Plus, the republic, tiny as it is, with a population of only about 320,000, has a large number of tertiary institutions. One clinic says that most of the donors are “international university students studying at universities in [North] Cyprus”. 



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August
26
 

IVF competition forces prices down in Australia

Australian IVF companies are experiencing slow growth despite having lowered the price of basic fertility treatments.

Two of Australia’s biggest IVF providers, Virtus and Monash IVF, this week reported sluggish annual growth. Virtus’ annual profit slumped 15 per cent to $28.1 million in the 2016/17 financial year, while Monash IVF managed only a very modest net profit increase.

Monash and Virtus recently introduced low cost treatments to match the budget services offered by new provider Primary Health Care.

Low cost Virtus clinics now offer cycles for out-of-pocket costs of between $900 and $1,500, compared with premium service facilities that charge around $5,000.

Virtus CEO Sue Channon attributed the lacklustre growth to a slump in domestic demand, but said that growth would pick up in coming years.

"We have seen fairly significant growth in single women and same sex couples accessing our donor services," Ms Channon told AAP.

"Annual growth rate variability is not unusual and historically we see that following periods of lower activity we see improvement, and that's due to the pent up demand."

Ms Channon said genetic screening was a key area of growth for Virtus, with revenue from pre-implantation genetic diagnosis and screening increasing by more than one third in 2016/17.

"We can expect to see growth ... in genetic screening, we have expended our testing platform and we'll be doing serology and early obstetrics pathology testing," 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.

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August
26
 

Anti-vaxxer resistance movement hits headlines in Australia

Anti-vaxxing was in the headlines in Australia this week, with revelations that at least three Victorian doctors are under investigation for granting unwarranted exemptions to parents of unvaccinated children.

The Herald Sun reports that the Australian Health Practitioner Regulation Agency (AHPRA) is investigating claims of an “underground network of anti-vaccination doctors” who have “helped hundreds of families avoid compulsory immunisations”. The newspaper reports that one doctor, Dr. John Piesse, has allegedly helped over 600 families to avoid compulsory vaccination.

The Australian Federal Government introduced controversial vaccination legislation in 2016 that makes access to childcare services and welfare payments conditional on the vaccination of children.

The doctors are said to have assisted families in sidestepping the new requirements. Dr. Piesse addressed a gathering of anti-vaxxers at a screening of the film Vaxxed in Melbourne earlier this month, telling attendees that he had “been working hard for 18 months to try and help parents get exemption from ‘vaccinated pain for vaccinated play’”. He advised audience members to get in touch with anti-vaxxing organisation Australian Vaccination-Skeptics Network if they were seeking an exemption.

Some healthcare experts believe Australian vaccination laws are too harsh. Dr Margie Danchin, a Senior Research Fellow at the The Murdoch Childrens Research Institute, told media this week that the current system is placing severe pressure on doctors and families:

“What we need is fairer polices that are less punitive that remind and encourage all parents to vaccinate, whilst retaining non-medical exemptions but making them very hard to get! That is, an exemption signed every year by the families' GP stating their reasons not to vaccinate.”

Yet the Federal Government believes that tough measures are necessary. “Vaccination saves lives and it protects lives”, said Federal Health Minister Greg Hunt.  “...if it is accurate that there are registered doctors who are advocating an anti-vaccination position then they will have the full force of the authorities come down on them,” he 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.

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August
26
 

Recovering a universal bio-ethic

Etymologically, the word “bioethics” means the ethics of life. But in practice, it has become the application of ethical principles to clinical work and research on humans. Writing in the American Journal of Bioethics, Lisa Lee, of the Presidential Commission for the Study of Bioethical Issues, calls for a return to the distant origins of bioethics.

The word “bioethics” was first used by the German pastor and theologian, Fritz Jahr in 1927. However, an American, Van Rensselaer Potter, re-coined the term in 1971 to express the need to bridge the gap between the humanities and the sciences. “Ethical values cannot be separated from biological facts,” he wrote. Today, we would probably say that he was searching for a vision which would integrate medical ethics with environmental ethics. Unhappily, Lee contends, these two fields have become strangers. What we now know as bioethics is merely an updated version of medical ethics.

How can we bring them together? Lee suggests that public health ethics is the bridge, with “health” being, as the World Health Organisation defines it: ““a complete state of physical, mental and social well-being, and not merely the absence of disease or infirmity”.

Public health ethics requires us to address head-on the numerous conflicts that arise in the values that motivate our work through pluralistic engagement of affected communities and deliberative decision making. It straddles the highly individual focus of contemporary biomedical ethics and the broad ecosystem focus of contemporary environmental ethics, supporting public health's goal to improve the health and lives of all of the planet's inhabitants by integrating medicine, veterinary medicine, and environmental sciences...

From this position, public health ethics can serve as a bridge back to Potter's broad vision and reacquaint us with an integrated bio-ethic that values and considers all living things.

She criticises bioethics as medical ethics as excessively individualistic and insufficiently concerned with justice and solidarity. Its focus is the tension between autonomy and the common good. A healthier focus should be “recognition of the complexity and interconnection of our place among social and ecological systems”.

And so she concludes:

“Public health ethics has the potential to serve as a bridge back to the future, connecting 21st-century ideas of biomedical ethics, public health ethics, and environmental ethics to Leopold's and Potter's visions for an ethic that moves all of Earth's inhabitants toward a good life. Health, social, and ecological justice demands this of us.



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August
26
 

Dancing with the star: suicide enthusiasts celebrate Nitschke’s 70th birthday

Australian euthanasia campaigner Philip Nitschke has a knack for public relations. To celebrate his 70th birthday recently an elderly flash mob assembled on the beach in Surfer’s Paradise, in the state of Queensland.

In an impressive display of geriatric choreography, the purple-clad crowd danced to the Bon Jovi hit, “It’s my life”. The lyrics were treated as a kind of anthem for rational suicide: “It's my life / It's now or never / I ain't gonna live forever / I just want to live while I'm alive.”

“We don’t want to waste away like vegetables in a nursing home,” one participant told 9NEWS. “Ever since I've been in a wheelchair and this is my life now I just don't want to live like this,” another said.

Dr Nitschke was also in the news recently in connection with the triple suicide of three women, Margaret Cummins, 78, and her two daughters, Heather and Wynette, in the nearby Gold Coast in June. He did not know them personally but they had all joined his network for promoting assisted suicide, Exit International, about a year before.   None of the three was suffering from a terminal illness. They gassed themselves using a system promoted by Dr Nitschke. Heather’s husband returned from shopping to find his wife, his mother-in-law, and his sister-in-law dead. Police said that he was rather shaken by the discovery.

“Rather than seeing this multiple family death as a tragedy, Exit prefers to see it as an example of rational suicide,” Mr Nitschke’s organisation commented. “Each woman took responsibility for the planning of her own death, at a time and place of her choosing. A peaceful death is everybody’s right.”



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August
19
 

China rushes into embryo selection

Gene-editing with CRISPR has been in the headlines over the past month and touted as a way of eliminating genetic diseases. But the cruder and cheaper technique of preimplantation genetic diagnosis does the same. And it is exploding in China. According to a feature in Nature, fertility doctors there “have been pursuing a more aggressive, comprehensive and systematic path towards its use there than anywhere else”.

The government’s current five-year plan for economic development has made reproductive medicine, including PGD, a priority. In 2004, only four clinics in the whole country were licensed to perform PGD; now there are 40.

Why the skyrocketing demand? With the recent relaxation of China’s one-child policy, many couples now want a second child. Since the mother may be older, she may need IVF to conceive. But there will be a higher risk of birth defects, so the embryos need to be screened to eliminate these.

The clinics are only allowed to screen for serious diseases. They are not permitted to do sex selection or to select physical traits, such as height and IQ. Some couples ask if the clinics can screen out embryos which carry a gene, common in China, which makes people unable to process alcohol. They want their child to be able to drink at China’s long, liquid business lunches. The official answer, however, is No.

According to Nature’s correspondent, David Cyranoski, there is very little ethical opposition to PGD in China:

“In the West, PGD still raises fears about the creation of an elite genetic class, and critics talk of a slippery slope towards eugenics, a word that elicits thoughts of Nazi Germany and racial cleansing. In China, however, PGD lacks such baggage. The Chinese word for eugenics, yousheng, is used explicitly as a positive in almost all conversations about PGD. Yousheng is about giving birth to children of better quality. Not smoking during pregnancy is also part of yousheng.”

But, compared to the West, PGD is regarded as a health issue, not an ethical one. “There are ethical problems, but if you bring an end to the disease, I think it’s good for society,” says Qiao Jie, a fertility doctor who is president of Peking University Third Hospital in Beijing. 



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August
19
 

Can genetics refute white supremacist theories?

This week’s headlines were filled with news from Charlottesville, Virginia, after a white supremacist drove his car into a crowd of people opposing a march of supremacists and noe-Nazis, killing one woman and injuring many others. Which leads one to ask: how white are American white supremacists?

For most of them, the most convincing way to prove their “whiteness” is DNA tests from companies like 23andMe.com and Ancestry.com. To their consternation, the results are often not what they expected. White supremacist Craig Cobb was outed on daytime TV in 2013 as “86 percent European, and … 14 percent Sub-Saharan African.” 

What’s interesting is how the white supremacists respond to these disconcerting test results. Aaron Panofsky and Joan Donovan, sociologists at UCLA, studied online discussions of genetic ancestry test results on the white nationalist website Stormfront. They found that the participants used fairly sophisticated reasoning to challenge the results and regain their “whiteness”.

Cobb, for instance, denounced his test as “statistical noise” and described it as a Jewish conspiracy to spread “junk science” whose “intent is to defame, confuse and deracinate young whites on a mass level—especially males”. Using a test from another company he was able to claim that he was European, apart from a “3% Iberian thing.”

Panofsky and Donovan conclude that genetics cannot refute racist views. Even though mankind probably came from Africa and even though the notion of “racial purity” is absurd, racists can manipulate and interpret data for their own purposes. They conclude:

clear communication, simple forms of education, and collective denunciations of scientific misuses, scientists’ preferred forms of anti-racist action, are insufficient for the task. Challenging racists’ public understanding of science is not simply a matter of more education or nuance, but may require scientists to rethink their research paradigms and reflexively interrogate their own knowledge production. 



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August
19
 

Managing the worsening opioid epidemic

Policy analysts are deeply concerned about the worsening opioid crisis in the US, and some are proposing radical measures to fight it.

A recently released study in the American Journal of Respiratory and Critical Care Medicine paints a grim picture of overdose and dependency among opioid users. Researchers from Beth Israel Deaconess Medical Centre in Boston and the University of Chicago report that opioid-related overdose deaths in the US have doubled since 2000 -- a result of addiction to both prescription painkillers like oxycodone and illegal drugs like heroin. Alongside this worsening trend, opioid overdose admissions requiring treatment in hospital intensive care units (ICUs) surged 34 % from 2009 to 2015, the study found. During this same period, the death rate for these ICU patients climbed from 7.3 % to 9.8 %. Drug overdoses are currently the number one killer of Americans under the age of 50.

“When we think of overdoses, we need not to just think about whether people died or survived, but also about the tremendous personal and societal costs” Dr Jennifer Stevens of Harvard Medical School, a lead author of the study, told Reuters.

Some specialists suggest that greater access to traditional opioid substitutes would lead to positive change. “People who use injection drugs should obtain naloxone, the overdose reversal drug, and use drugs with partners who can help them,” says Brendan Saloner, a researcher at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “There is unfortunately a lot of stigma about medication treatments, but they are safe and work,” Saloner added. “Long-term change is possible and recovery is a realistic goal, but it requires time and patience.”

Yet some suggest that standard treatments are failing to address the problem. Instead of providing  methadone and naloxone substitutes, Chelsea Cox, a candidate for a JD and a Master of Health Administration at Dalhousie University, argues that we should de-stigmatise marijuana and make the drug more readily available:

“Patients want access [to medicinal marijuana] … A team from University of California, Berkeley reported that 93% of patients said that they decreased their use of opioids when they also used medical marijuana. These numbers show the need for governments to get on the same page as patients – especially with 142 Americans dying from drug overdoses each day.” 


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.

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August
19
 

Dutch couple choose euthanasia together

The latest husband-and-wife euthanasia in the Netherlands took place on July 4. Nic and Trees Elderhorst, both 91, died in their home town of Didam, surrounded by family members. Neither was terminally ill, but both were in failing health. Nic, the husband, had a stroke five years ago, and Trees, the wife, was declining into dementia.

The couple had made advance directives in 2012 but they needed the euthanasia before Trees became unable to give her informed consent.

The couple applied to the Levenseindekliniek, a clinic which handles euthanasia requests when other doctors refuse. “They gave each other a big kiss and passed away confidently holding hands,” one of their daughters told a local newspaper, the Gelderlander.  

Couple euthanasia is relatively common in the Netherlands, although some requests are refused because one of the partners does not fulfil the criteria. According to the Gelderlander, there are “a few cases a year” – statistically negligible, but socially significant and no longer surprising. 



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August
19
 

Stand-off with Catholic hospitals as euthanasia gains traction in Canada

As euthanasia rates increase in the Canadian province of Ontario, pressure is mounting on Catholic Healthcare providers to abandon their blanket opposition to Medical Assistance in Dying (MAiD).

Over 630 Ontarians have received MAiD since the procedure was legalised in Canada in 2015, according to data from the provincial coroner, yet none of these cases has taken place in a Catholic healthcare facility.

Lobby groups are now calling for sanctions on Catholic healthcare providers, particularly in light of the public funding these providers receive.

Dying With Dignity Canada CEO Shanaaz Gokool told CBA News that her organisation is considering a legal challenge of Catholic hospitals’ right to conscientiously object to participation in euthanasia.

Gokool says that the Catholic healthcare policy of transferring MAiD patients to secular facilities places an undue burden on patients. "It really depends on how precarious their physical medical condition is," she said. "And if they are in a precarious state physically, then that can cause them more trauma."

Ontario health minister Eric Hoskins said that access to MAiD was not currently a problem. "We're obviously monitoring it very, very closely and currently don't have those concerns in terms of access," he told CBA News. "And about half of medical assistance in dying happens at home”. 



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.

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August
19
 

Pope demands that Belgian Catholic hospitals stop euthanasia

Earlier this year a group of Catholic hospitals and clinics for the mentally ill in Belgium announced that it would allow doctors to perform euthanasia on its premises. The group is linked to a religious order, the Brothers of Charity.

Earlier this month Pope Francis issued an ultimatum: this must stop by the end of August. He also ordered the three Brothers who serve on the 15-member board to sign a letter stating that  they “fully support the vision of the magisterium of the Catholic Church, which has always confirmed that human life must be respected and protected in absolute terms, from the moment of conception till its natural end.”

If the board refuses, the hospitals could lose their affiliation with the Catholic Church.  

One of the board members is Herman Van Rompuy, a former President of the European Council and Belgian Prime Minister. He tweeted that “The time of ‘Roma locuta causa finita’ is long past.”

Brother René Stockman, the head of the Brothers of Charity, is a Belgian but opposes the stand taken by the local members of his own order. He commented: “The central point and the foundation within Christian ethics is that life is absolute, which cannot be touched. Life is a gift from God and entails an assignment. And because life is absolute, it is a state worthy of protection.”

A spokesman for the Belgian group acknowledged that it had received a letter from the Vatican but said that it had not yet responded. 



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August
19
 

Is there a link between suicide and irreligion?

There is significant debate about the link between religion and psychological well-being.

University of California Irvine psychiatrist Aaron Kheriaty recently weighed into the discussion, arguing that higher rates of suicide in the US are linked to declining religious participation and a sense of fractured identity among younger Americans. In an opinion editorial published this month’s edition of the Catholic intellectual journal First Things, Kheriaty warns of a “rising plague of melancholy”:

“In recent times, America has experienced both a weakening of social connections and rapid forms of cultural change...Too many people today have lost these moorings. Social bonds are weakening, and the social fabric is fraying. We are at risk of losing a solid identity, a clear orientation, and the coherent narratives that give meaning to our individual and shared lives. In a world stripped of universally binding truths, the sense that we are losing solid foundations leads to free-floating angst.”  

Several recent studies on religion and depression provide support for Kheriaty’s thesis. A 2016 study by influential Harvard psychiatrist Tyler VanderWeele, for example, revealed that religious participation among American women was closely linked to lower rates of suicide. Between 1996 and 2010, those who attended any religious service once a week were more were five times less likely to commit suicide. Of the 6,999 Catholic women in the study who said they attended Mass more than once a week, none committed suicide.

Some studies suggest that the relationship between religious participation and suicide differs between cultures and regions. A recent study published by University of Michigan sociologist Ning Hsieh, for example, claims that in some regions of the world religious participation is correlated with higher rates of suicide. Other recent studies, however, dispute this conclusion. A 2017 study published by researchers from Columbia University Medical Center states that “religious service attendance is not especially protective against suicidal ideation, but does protect against suicide attempts, and possibly protects against suicide”.



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.

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August
19
 

Psychiatry becomes political weapon in US

Congressional Democrats have approached outspoken Yale University psychiatrist Dr Bandy Lee about forming an expert panel to offer advice on President Donald Trump’s mental health.

Dr. Lee – who told the media earlier this year that psychiatrists have “an obligation to speak about Donald Trump’s mental health issues” – says she has talked with several members of congress or their staff about convening psychiatrists, psychologists, and other mental health professionals to review the president’s health.

Lee told a STAT reporter that she would meet Democratic representatives in September to discuss the proposal. Democratic senators have already tabled a bill in Congress that invokes the 25th Amendment and seeks to establish “a commission on presidential capacity”.

In October Lee will release a book entitled The Dangerous Case of Donald Trump that summarises the views of 27 psychiatrists on Trump’s worrisome psychological state.

Recently BioEdge reported on an influential psychiatric association’s decision to abandon the decades old Goldwater Rule – a professional maxim that psychiatrists should refrain from offering their expert opinion on public figures whom they have never seen as 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.

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August
19
 

Iceland: nearly 100% of Down syndrome babies terminated

Nearly 100% of Down syndrome babies are aborted in Iceland, according to a CBS News special report – probably the highest in the world. The rate in the US is 67 percent (1995-2011); in France 77% (2015); and in Denmark 98% (2015).

Some women who have refused to have prenatal screening and others whose screening test returned a false negative continue to give birth to  Down syndrome children, but this sum up only to 1 or 2 a year. The others are all aborted.

This is happening, as CBSN observes, even though “Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.”  

"It reflects a relatively heavy-handed genetic counseling," says Kari Stefansson, the founder of deCODE Genetics, a world-renowned genetics database. "And I don't think that heavy-handed genetic counseling is desirable. … You're having impact on decisions that are not medical, in a way."

He went on to say, "I don't think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision."



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August
12
 

Has the venerable Belmont Report passed its use-by date?

The 1979 Belmont Report by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research laid the foundations for bioethics standards in the United States and around the world. It identified three core principles: respect for persons, beneficence, and justice and three areas where ethical analysis was particularly needed: informed consent, assessment of risks and benefits, and selection of subjects.

But this was nearly 40 years ago. Is it time for an overhaul?

Yes, according to a leading American bioethicist, Art Caplan and three colleagues writing in the American Journal of Bioethics:

Since its release, the field of research involving human subjects has developed in complex and unexpected ways, challenging the report's ethical framework to respond not only to the fears related to research abuses that it stemmed from, but also to the increasing commodification of biomedicine, the exclusion of many groups from research, the globalization of research, the desires of many to have access to experimental drugs, the lack of generalizability and reproducibility of many research findings, and the unique harms and histories that communities have experienced as a result of research. While these challenges are likely to continue to shift and expand in the coming years, there are several areas where the report comes up short today.

The Belmont Report was issued at a time when Americans were scandalised by the exploitation of research subjects in incidents like the Tuskegee Syphilis Experiment in which poor black farmers were denied treatment for their infections long after a cure became available. But times have changed; today bioethicists place greater emphasis on patient autonomy.   

The authors identify five areas which are poorly served by the Belmont Report’s standards:

the line between research and practice is insufficient; unique harms to communities remain unacknowledged; failure to address transparency; the report’s focus on protectionism is incompatible with today's emphasis on participation; and how the ethical principles are applied.

The authors conclude: “Considering the important role the Belmont Report has played and continues to play in research ethics today it is time for a tune-up, if not a complete overhaul.”



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August
12
 

A Quebec ‘mercy killing’ prompts a rethink on euthanasia law

Michel Cadotte, his sister and his sister-in-law entering court

The ink was hardly dry on Canada’s right-to-die legislation before lawsuits began to expand eligibility for euthanasia to those who are not terminally ill. And now a high-profile case in Quebec could lead to euthanising patients with dementia.

On February 20 Michel Cadotte was arrested by Montreal police after a post appeared on his Facebook page: “I’ve cracked, nobody asked how I’m doing, but now you know, I’ve consented to her request of assistance in dying, I’m waiting for the police.”

Cadotte, 56, was paying a visit to his wife, Jocelyne Lizotte, 60, who had Alzheimer’s disease and was living in a nursing home. He took a pillow and smothered her to death. He had been caring for her since 2006 and was exhausted.

She had reportedly wanted to be euthanised. However, even though Canada allows euthanasia (and Quebec also has its own law), a patient has to be legally competent in order to lodge a request for “medical aid-in-dying”. Jocelyne did not qualify.

Touched by the drama of this case, Quebec legislators are considering a change in legislation to allow people to make binding advance directives for euthanasia before they slip into dementia. This is a feature which was rejected by both the Federal and Quebec governments when they drafted their legislation. Quebec’s came into force in December 2015 and the Federal law in June 2016.

Dr Catherine Ferrier, the president of the Physicians’ Alliance against Euthanasia, told STAT that she was surprised that the Cadotte case was being used to broaden the scope of eligibility for euthanasia. “When I heard this story, I thought, ‘This has nothing to do with my euthanasia work, it has to do with my geriatrics work,’” she said. “It has to do with providing proper care, it has to do with providing proper support for caregivers so they don’t flip out. … How come the whole world isn’t saying, ‘Let’s look after people properly?’”



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August
12
 

German interest in racial theories foreshadowed in WWI

Although the interest of some German scientists in now-discredited racial theories is best known as a World War II phenomenon, archivists have discovered that at least one POW camp in World War I was also a centre for racial research. According to a feature on Australia’s ABC, an Aboriginal soldier, Douglas Grant, was captured at Battle of Bullecourt in April 1917. Eventually he ended up at Wünsdorf, a POW camp south of Berlin.

The POWs of Wünsdorf were an extraordinary bunch, for they were mostly Muslims. One of the more bizarre schemes of their German captors was to whip up fervour for jihad among Muslim POWs and send them back to India and the Middle East to stir up trouble for the Allies. The 5000 POWs were given luxurious treatment and an elaborate mosque was built in the camp. It was Germany’s first.

With captives from around the world, German researchers also realised that this was a golden opportunity to investigate racial differences. Grant was a full-blood Aboriginal from the Atherton Tablelands in Queensland who had been adopted by a white couple from Sydney.  "He was measured all over, and upside down and inside out," Grant told an historian later.  According to the ABC:

While the scientists argued there was a scientific basis to these studies, there was also a clear agenda to create a picture of German superiority and racial purity. It was the beginnings of attempting to prove that Germans were the "master race". One German scientist argued that the POW camps were "a Völkerschau [people show] without comparison"...



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August
12
 

A cool idea for an afterlife

“To die in order to live” is one of the commonplaces of Christian piety. So it was a bit jarring to stumble across a similar sentiment in an article in the journal Bioethics by utilitarian bioethicists. In discussing the ethics of cryopreservation, Francesca Minerva, of the University of Ghent, and Anders Sandberg, of the University of Oxford, recall that two cryopreserved people “wanted to die in order to live”.

It is in this spirit that they defend the possibility of euthanasia followed by cryopreservation, a procedure they call “cryothanasia”:

It achieves the positive goal of euthanasia (ending suffering) without its negative instrumental side-effect (permanent cessation of life). Even if it turns out to cause information-theoretic death, the intention is clearly to extend life.

They argue that objections to euthanasia should not apply to cryothanasia. The first objection is the “weirdness argument”. Weird it is, they admit, but we already allow weird practices like circumcision or refusing blood transfusions.

The most powerful objection, however, is that cryopreservation simply will not work. The likelihood of success is probably very low, Minerva and Sandberg acknowledge, but a tiny chance of extending one’s lifespan for many years sometime in the future would make it worthwhile.

Essentially, cryothanasia for a person near death is a gamble of a small number of Quality Adjusted Life Years (QALYs) versus a low-probability gain of many QALYs. Traditional cryonics is a gamble of zero QALYs versus a potential gain. Whether cryothanasia is rational depends on whether the ratio (remaining QALYs)/(potential QALYs) is less than the estimated probability of success.

The ethics of cryopreservation reprises Pascal’s Wager about the existence of God, as bioethicist David Shaw argued a few years ago. Ultimately, he contended, it makes sense because "for atheists who don't believe in an afterlife, cryonics represents the only chance of life after 'death'".



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August
12
 

Scientists one step closer to interspecies organ transplants

A landmark study has reopened the door for xenotransplantation research (research into interspecies transplants).

A team of Chinese and US scientists have created gene-edited piglets that are free of harmful viruses that cause disease in humans. Scientists now believe that pig organs can be edited to prevent rejection when transplanted into the human body.

In a paper published in the journal Science on Thursday, researchers reported that they had successfully used CRISPR technology to “splice out” 25 porcine endogenous retroviruses (PERVs) from the genetic code of 37 piglets. The viruses are scattered throughout the pig genome and have the potential to cause bizarre and harmful retroviral infections in humans.

While safe and effective pig-to-human organ transplants are a long way off, the researchers are optimistic.

"We recognise we are still at the early stages of research and development”, Dr Luhan Yang, a coauthor of the paper, told the BBC. "We know we have an audacious vision of a world with no shortage of organs, that is very challenging, but that is also our motivation to remove mountains."

The next stage of the research, Yang says, will be to essentially “humanize” the pigs—modifying them enough that their organs can function in the human body. This involves immunological changes as well as making the tissues compatible and fixing blood-clotting issues.

Animal rights groups have expressed concern at the research, saying that xenotransplantation may eventually lead to astronomical numbers of pigs being exploited to grow human-like organs. 



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.

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August
12
 

US Senate passes ‘right to try’ law

The US Senate has passed a Right To Try bill that will allow terminally patients to bypass FDA approval when seeking access to experimental medication.

The bill, which expands on compassionate-use legislation passed in states across the country, will give patients the right to request trial drugs directly from pharmaceutical companies. Currently patients must submit an application to the FDA before approaching manufacturers.

The bill also ensures that patients are charged no more than the production cost for the drug, while providing pharmaceutical companies with a degree of legal protection if the patient experiences harm from the treatment. Safety issues that occur in compassionate-use cases must be reported to the FDA, the proposed legislation states.

“Patients with terminal diseases ought to have a right to access treatments that have demonstrated a level of safety and could potentially save their lives,” Senator Ron Johnson of Wisconsin, the author of the bill, said in a statement after the unanimous Senate vote.

Bioethicists are sceptical.  Alison Bateman-House, of NYU Langone Medical Center, called the bill “inherently deceptive” because it simply says patients can ask drug companies for the treatments. Companies often are reluctant to provide unapproved products for a variety of reasons, and the FDA has an efficient system to handle requests for experimental drugs, she told the Washington Post.

In a scathing blog post, bioethicist Craig Klugman criticised Right To Try advocates for bypassing “logical arguments, reason, and good facts”:  

“...A pure market approach to pharmaceutical distribution sacrifices safety, accurate labeling, scientific approaches to treatment, and protecting the public from harm. In their winner-takes-all arena, there must be winners and losers. If right-to-try wins, then we all lose”. 


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August
12
 

Artificial womb keeps lambs alive, raising hope for preemies

Researchers have successfully used an artificial womb to incubate premature lambs, with experts saying the technology may one day be used for extremely premature babies.

In a paper published this week in the American Journal of Obstetrics and Gynecology, researchers affiliated with the University of Western Australia (UWA) report that they have incubated premature baby lambs in a uterus-like environment for seven days, allowing the lambs to grow without the adverse effects of a preterm birth.

The researchers call their technique ex-vivo uterine environment (EVE) therapy, and it involves placing the infant specimen in a high-tech amniotic fluid bath with an artificial placenta that allows for gas exchange and nutrient delivery.

“By providing an alternative means of gas exchange for the fetus, we hoped to spare the extremely preterm cardiopulmonary system from ventilation-derived injury, and save the lives of those babies whose lungs are too immature to breathe properly”, UWA Associate Professor Matt Kemp said. “...Although significant development is required, a life support system based around EVE therapy may provide an avenue to improve outcomes for extremely preterm infants”, he said.

The study comes in the wake of research published earlier this year by the Center for Fetal Research in Philadelphia. In that study, researchers developed a womb-like environment in which premature lambs lived for over four weeks before being delivered.

The idea of artificial wombs raising interesting bioethical questions about the morality of abortion and the ethics of ectogenesis, or pregnancy outside the womb. 



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August
12
 

New York doctor told to stop marketing 3-person IVF technique

A New York IVF clinic has been told by the US Food and Drug Administration to stop marketing Mitochondrial Replacement Therapy (MRT) – an experimental procedure that aims to prevent defective mitochondrial-DNA from being passed on to children.

New Hope Fertility Clinic – a business of Dr John Zhang, an American clinician who last year delivered the first “three parent baby” – has been advertising the procedures on its website for months. It is described MRT as a "revolutionary technology designed to reverse the effects of age on human oocytes and repair certain cellular defects”, and “the first proven treatment for certain genetic disorders”.

While MRT is prohibited in the US, Dr. Zhang and colleagues have set up a clinic in Guadalajara, Mexico. For roughly US$80,000, New Hope was offering to take women to the Mexican clinic to receive the procedure.  

But in a letter sent to the clinic last week, the FDA ordered Zhang to stop advertising the procedure. FDA officials listed several claims made on the New Hope website that needed to be removed immediately.

The procedure is not approved in the U.S., and Congress has barred the FDA from even reviewing proposals to conduct MRT trials.

Defective mitochondrial DNA can cause a variety of serious and sometimes fatal conditions, such as Leigh Syndrome. The new technique involves removing some of the mother’s DNA from an egg, and leaving the disease-causing DNA behind. The healthy DNA is implanted in a donor’s egg, which is then fertilised. The baby inherits DNA from both of the parents as well as the egg donor, though the DNA contribution of the donor is very small. 



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August
05
 

Human embryos modified to eliminate a single-gene disease

American and Korean scientists have published in Nature the details of how they successfully edited a single gene in human embryos. A team of American, Chinese and Korean scientists led by Shoukhrat Mitalipov of Oregon Health and Science University used gene-editing CRISPR/Cas9 technology to eliminate a gene, MYBPC3, linked to a heart disorder.  

Stem cell scientist Paul Knoepfler said that the highly-anticipated paper was technically strong, innovative and rigorous – which suggests that other scientists will soon be building on Mitalipov’s achievements. Perhaps one of the most significant of these was its safety. The paper claims that there were no off-target mutations and no mosaic embryos.

The potential for the technique is immense. The article focuses on curing diseases. About 10,000 harmful single-gene mutations have been identified from breast cancer to Tay-Sachs. Interest in eliminating these will be intense.

However, when other less competent, less experienced and less ethical scientists scale up the number of embryos, safety could obviously suffer.

Nearly every observer stated the obvious: a technique for safely and effectively editing the human genome has significant ethical implications. It can be used not only for curing diseases but for “enhancing” embryos with “better genes”.

Therefore, Mitalipov’s team took great care to dot their ethical is and cross their ts. “Even though this preliminary effort was found to be safe and effective, it is crucial that we continue to proceed with the utmost caution, paying the highest attention to ethical considerations," said corresponding author Juan Carlos Izpisua Belmonte.

As Vivek Wadhwa, a technology expert from Carnegie-Mellon, wrote in the Washington Post, “CRISPR’s seductiveness is beginning to overtake the calls for caution.” For some scientists and bioethicists, the danger of haste can be averted with more reports and more ethics committees.

For others, creating and destroying human embryos for research is itself anathema. In this experiment, dozens of embryos were created, and all were destroyed before they had grown beyond a few days. But everyone recognised the potential for a new generation of eugenics, which has so long been under the shadow of the Nazis’ discredited ideology.

David Albert Jones, of the UK’s Anscombe Institute, penned a withering critique, “Unethical research with eugenic goals”. “The whole rationale for this experiment is to take a step towards genetic modification as an assisted reproductive technology,” he writes. “We are manufacturing new human beings for manipulation and quality control, and experimenting on them with the aim of forging greater eugenic control over human reproduction. This is not a case of using bad means for a good end, but of bad means to a worse end.” 



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August
05
 

Commercial surrogacy still thriving in India

Some of the 47 women in a Hyderabad clinic / NDTV 

Efforts to ban commercial surrogacy in India are hitting one speed bump after another. At the moment, despite lobbying from IVF clinics, the government has banned the practice for overseas clients. However, there is still a thriving business in local surrogacy.

A Surrogacy Regulation Bill was introduced into the national parliament last November, but little progress has been made. In fact, it might be killed altogether by combining it with another bill for regulating assisted reproduction.

Surrogacy scandals about "baby factories" are still making headlines in India. In mid-June police raided a fertility clinic in an up-market suburb in Hyderabad and found 47 pregnant women living a two-storey dwelling. The clinic did not allow them to leave the building until they had delivered their babies. “The women were all huddled in one large room and had access to just one bathroom,” a police officer told the Thomson Reuters Foundation.

A few days later, police raided several buildings in another city in Telangana state and found, according to the local media, 120 pregnant women. The managing director of Padmaja Fertility Centre -- who apparently had engaged all the women -- declared that all the rules for surrogacy had been followed. Police did not lay charges.

Pinki Virani, an activist who recently wrote a book on assisted reproduction, has urged the government to speed up regulation:

... the government of India, and the states, awaiting a comprehensive surrogacy law, cannot afford to be sitting around while more surrogacy rackets come to light, like the recent one in Hyderabad's upmarket Banjara Hills, where multiples of pregnant women were being held. Since scant records were being maintained at these so-called surrogacy centres, we don't even know if some of the intending babies from those victims of human trafficking were actually meant to be sold for the internet-infant-porn market.



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August
05
 

New kid on the block: the bioethics of ageing

There is ever-multiplying number of sub-specialties in bioethics -- procreative ethics, intergenerational ethics, neuroethics, robot ethics, animal ethics, environmental ethics and so on. But, despite constant doom-mongering in the media about greying populations, chatter about ageing ethics is subdued.

This might change if Christopher Simon Wareham, of the University of the Witwatersrand, has his way. In an online-first article in the Journal of Medical Ethics, he proposes “ageing ethics”, which is “arguably even more fundamental and ubiquitous than procreation”.

The great drawback of ageing ethics is that it will inevitably be viewed as negataive and depressing, “with a narrow focus on issues concerning healthcare costs, end-of-life decisions, and increasing decrepitude and dementia”. But Wareham points out that ageing is a life-long process and includes issues like mid-life crises.

He also makes an interesting distinction between “right ageing” and “good ageing”. 

Ethical dilemmas related to right ageing concern questions about our duties and rights as ageing persons. What ought the ageing person to do in response to ageing-related dilemmas? For instance, the theorist may ask whether it is sometimes morally obligatory for an older person to refuse a treatment so that a younger person may have it. As a further example, ethicists of ageing may address the question of whether forced retirement violates societies’ obligations towards ageing persons.9

Rather than focusing on rights and duties qua ageing persons, ethical questions related to good ageing focus on well-being. How can we age well or meaningfully? For instance, the theorist may ask which ethical theories allow us to cope best with our status as ageing beings. Which values, goods and harms are most relevant to the ageing person, and which virtues are most relevant to flourishing as one ages? 

The definition of ageing matters as well. Transhumanist writers and their allies amongst bioethicists tend to regard ageing as a disease which need to be cured. Others, like Leon Kass, former head of the US bioethics commission under President George W. Bush, believe that ageing is a valuable part of human flourishing. 



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August
05
 

Latest end-of-life statistics from the Netherlands

More statistics about euthanasia from the Netherlands, based on the latest figures from 2015. Nearly one death in 20 (4.5%) is now due to euthanasia.

The figures come from a letter in the latest issue of the New England Journal of Medicine. “It looks like patients are now more willing to ask for euthanasia and physicians are more willing to grant it,” said lead author Dr. Agnes van der Heide of Erasmus University Medical Center in Rotterdam.

But the statistics for euthanasia alone masks the proportion of end-of-life decisions in the Netherlands. The figures for some categories overlap, but 4.5% of all deaths happened through euthanasia, 0.1% through physician-assisted suicide; and 18.3% through “continuous deep sedation”.

This last category is slippery and controversial. It accounts for nearly 1 death in 5 in the Netherlands. In some cases doctors agree that it is appropriate for refractory pain; but it can also be a form of “slow euthanasia” used to evade regulation and scrutiny.

The statistics are based on a questionnaire given to all Dutch physicians which more than three-quarters answered. “Ending of life without an explicit patient request” accounts for 0.3% of all deaths. This has decreased since 1990, when the figure was 0.8%. But possibly some doctors are using continuous deep sedation instead.

Bioethicists observed that the increase was to be expected. “Doctors become more confident in practicing euthanasia and more patients will start asking for it,” said Penney Lewis, co-director of the Centre of Medical Law and Ethics at King’s College London.

Dr van der Heide suggested that the small but increasing number of euthanasia deaths for people who were not terminally ill was troubling. “When assisted dying is becoming the more normal option at the end of life, there is a risk people will feel more inclined to ask for it,” she said.



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August
05
 

Avoiding the next Charlie Gard dispute

In the wake of the passing of British infant Charlie Gard – who was at the centre of a treatment dispute that made international headlines – health care analysts are considering what steps can be taken to avoid future conflicts between family and medical staff.

In an editorial in the British Medical Journal, Dominic Wilkinson of the Uehiro Centre for Practical Ethics argues that “the court of public opinion is surely the worst possible place for ethically complex decisions”. Wilkinson suggests that transparency about the facts pf the case, and a better understanding of what causes doctor-family conflict, would help avoid future controversies.

“A better understanding of the epidemiology of conflict would help put cases like Charlie Gard into a broader context and identify better ways to resolve them... But without the facts, or with incorrect facts, there is a real danger of jumping to incorrect and potentially harmful conclusions.”

The editors of The Lancet agree with Wilkinson. In an editorial in the latest edition they state:

“Charlie's legacy could include further work on best practice guidelines for mediation between clinical teams and parents, agreement on a framework for use of experimental treatment, appropriate and timely focus on palliative and hospice care, and encouragement to clinicians offering alternative treatment to ensure they have full knowledge of the facts of the case.”  

John Wyatt, a neonatologist and emeritus professor at University College London, suggests that we need to reflect on appropriate way to understand the doctor-patient relationship:

“A helpful concept is the expert-expert relationship.  Health professionals are experts in the diagnosis and prognosis of diseases and of the medical treatments that are available.  But parents too are experts – in their family history and background, in their personal concerns, goals and philosophy of life.  And collaboration between experts can only work if there is openness and respect... Charlie Gard’s sad plight is focussing renewed attention on practical mechanisms for improving communication, mediation and conflict resolution between parents and doctors.”

However, few British commentators suggested changing the law, which privileges the “best interests of the child” over “deference to parental views”. As a senior judge explained in April “although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests.”

Things looked quite different across the Atlantic, where many people were baffled when the court thwarted Charlie’s parents’ desire to take him for treatment in the US and to die at home. To many Americans, the outcome felt like murder. And they thanked God that the US is the only member of the United Nations which has failed to ratify the UN Convention on the Rights of the Child – which declares “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”



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.

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August
05
 

If infanticide is wrong, is abortion wrong?

Should we abandon arguments for abortion if they also permit infanticide? Two US-based academics say “yes”.

In a new paper in the journal Theoretical Medicine and Bioethics, philosophers David and Rose Hershenov suggest that non-conscious fetuses and minimally conscious neonates are morally equivalent in their fundamental interests, namely, their shared interest in “healthy development”.

Insofar as we see infanticide as wrong, we should, therefore, see abortion as wrong. The authors assert that “Mindless organisms only have interests in healthy development or proper functioning and the flourishing that involves”. Even if this is a fairly basic interest, it is nevertheless, morally important and worthy of respect: “...When it is mindless, there is probably nothing else to its good than its health, i.e., its proper functioning is constitutive of its flourishing. But that is still very valuable and is why infanticide is a great wrong.”

The authors continue with the pointed remark, “as long as one’s attitude is that infanticide is a great harm and wrong, even if it is not as bad as killing the reader, then abortion too is a great harm and wrong”.

Importantly, the authors argue that several well-rehearsed arguments for abortion also lead us to endorse infanticide. The two philosophers assert that arguments about viability, consciousness and equality can all be reconfigured into arguments that allow for the killing of newborns.

In 2013 two Australian authors, Alberto Giubilini and Francesca Minerva made headlines around the world after publishing a paper in the Journal of Medical Ethics that argued for the permissibility of infanticide. The controversy surrounding the Giubilini and Minerva paper generated spirited discussion in the world of bioethics about academic freedom and the role of bioethics in challenging our moral intuitions. 



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August
05
 

Australian surrogacy broker jailed in Cambodia

49-year-old Australian nurse Tammy Davis-Charles has been found guilty by a Cambodian Court of running an illegal surrogacy business, and will serve 18 months in the country’s Prey Sar prison.

Davis-Charles was arrested last November after a government crackdown on commercial surrogacy. The woman, who herself has young twins born via surrogacy, had been operating a clinic called Fertility Solutions PGD in Phnom Penh since 2014. The clinic had catered mainly to Australian couples.

Experts say that “surrogacy is in its dying days” in Cambodia, with the government passing interim measures — valid until January 2018 and only applying to babies already born or in utero — to allow foreign parents to take children born to surrogates out of the country.

******

A new play showing in London offers a poignant portrayal of the ethical complexities of commercial surrogacy. Vivienne Franzmann’s Bodies tells the story of affluent British couple who, after years of trying in vain to have their own child, commission a surrogate in India to bring their baby to term.

While the arrangement begins well, details emerge throughout the play of family tensions, emotional trauma, and desperation in the lives of both the Western couple and the surrogate. The play has received positive reviews, and provides powerful insight into the ethically problematic nature of the international surrogacy market.

“Bodies reminds us that decisions about surrogacy cannot be made without considering fully the plight of surrogate mothers”, wrote The Lancet senior editor Marco De Ambrogi. 



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.

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August
05
 

The risk of a transhumanist future

Transhumanism has received significant media attention in recent times – not in the least because the one of the movement’s leaders, Zoltan Istvan, ran for president in 2016 US elections.

But a British PhD candidate has warned of the darker side of a transhumanist future.

Sociologist Alex Thomas of East London University believes that transhumanism will further enforce a societal obsession with “progress” and “efficiency” at the expense of social justice and environmental sustainability. In an article published this week in The Conversation, Thomas argues that unbridled technological progress, in which technology “become more intrusive and integrate seamlessly with the human body”, could lead to a loss of basic societal values such as compassion and a concern for the environment.  

Transhumanism and advanced capitalism are two processes which value “progress” and “efficiency” above everything else. The former as a means to power and the latter as a means to profit. Humans become vessels to serve these values. Transhuman possibilities urgently call for a politics with more clearly delineated and explicit humane values to provide a safer environment in which to foster these profound changes.”

Thomas interweaves examples ranging from new military technologies to powerful enhancement medications, arguing that, rather than assisting humanity, these technologies could potentially lead to a “mechanisation” of humanity and facilitate a subtle form of authoritarian control. 



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.

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July
29
 

Influential psychiatric group abandons Goldwater Rule

A leading American psychiatric organisation has formally abandoned so-called "Goldwater Rule", telling its members that they are free to comment on the mental health of public figures — including the president.

The American Psychoanalytic Association, which has 3500 members, told followers in an email this week that the responsible use of professional expertise in public affairs is permissible.

The impetus for the email was “belief in the value of psychoanalytic knowledge in explaining human behavior,” said psychoanalytic association past president Prudence Gourguechon, a psychiatrist in Chicago. “We don’t want to prohibit our members from using their knowledge responsibly.”

The move represents the first significant crack in the profession’s decades-old united front aimed at preventing experts from discussing the psychiatric aspects of politicians’ behavior. It will likely make many of its members feel more comfortable speaking openly about President Trump’s mental health.

"The Goldwater Rule" — which has been formally endorsed by the American Psychiatric Association for decades — states that psychiatrists and psychologists should refrain from commenting on the mental health of high-profile individuals who they have not examined in person and who have not given consent to having their mental health discussed in public. The rule takes its origin from the controversial psychiatric commentary that was aired about former presidential candidate Barry Goldwater during the 1964 election.

In October, a book titled “The Dangerous Case of Donald Trump: 27 Psychiatrists and Mental Health Experts Assess a President” will be published.



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.

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July
29
 

Declining sperm count could lead to ‘extinction’

In the first systematic review of trends in sperm count, researchers this week reported in the journal Human Reproduction Update a significant decline in sperm concentration and total sperm count among men from Western countries.

They found a 52.4 percent decline in sperm concentration, and a 59.3 percent decline in total sperm count among men from North America, Europe, Australia and New Zealand who were not selected based on their fertility status. In contrast, no significant decline was seen in South America, Asia and Africa, although far fewer studies have been conducted there.

The study also indicates the rate of decline among Western men is not decreasing: the slope was steep and significant even when analysis was restricted to studies with sample collection between 1996 and 2011.

Dr Hagai Levine, of Hebrew University, in Jerusalem, the lead author, told the BBC that if the trend continued humanity was in deep trouble. "If we will not change the ways that we are living and the environment and the chemicals that we are exposed to, I am very worried about what will happen in the future. Eventually we may have a problem, and with reproduction in general, and it may be the extinction of the human species."

While declines in sperm count have been reported since 1992, the question has remained controversial because of limitations in past studies. However, the current study uses a broader scope and rigorous meta-regression methods, conservatively addresses the reliability of study estimates, and controls for factors that might help explain the decline such as age, abstinence time, and selection of the study population.

"Given the importance of sperm counts for male fertility and human health, this study is an urgent wake-up call for researchers and health authorities around the world to investigate the causes of the sharp ongoing drop in sperm count, with the goal of prevention," said Dr Levine.

The findings have important public health implications. First, these data demonstrate that the proportion of men with sperm counts below the threshold for subfertility or infertility is increasing. Moreover, given the findings from recent studies that reduced sperm count is related to increased morbidity and mortality, the ongoing decline points to serious risks to male fertility and health.

While the current study did not examine causes of the observed declines, sperm count has previously been plausibly associated with environmental and lifestyle influences, including prenatal chemical exposure, adult pesticide exposure, smoking, stress and obesity. Therefore, sperm count may sensitively reflect the impact of the modern environment on male health across the lifespan and serve as a "canary in the coal mine" signalling broader risks to male health.



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July
29
 

First American success with editing human embryos

American scientists have been jealous of Chinese rivals who have used CRISPR gene-editing techniques on human embryos. This week, however, it was revealed that scientists at a lab in Portland, Oregon, have successfully used the technique on human embryos.

According to a scoop by MIT Technology Review, a team led by Shoukhrat Mitalipov of Oregon Health and Science University successfully edited a gene for a genetic disease in scores of human embryos which had been created with sperm donated by carriers of the gene. None of the embryos were allowed to live for more than a few days.

The research is still unpublished and Dr Mitalipov refused to comment.

Chinese scientists have published three papers describing how they had edited human embryos. But it turns out that the technique is not as straightforward as they hoped. As the embryo developed, they found that not all of the cells had been “edited” and that there were some “off target” effects. According to the MIT Technology Review, Mitalipov’s technique has overcome these difficulties.

Genetic enhancement, or “designer babies”, is still illegal in the United States. However, equipped with Mitalipov’s techniques, scientists elsewhere could offer this service. As the MIT Technology Review points out:

... the creation of a gene-edited person could be attempted at any moment, including by IVF clinics operating facilities in countries where there are no such legal restrictions.

In any case,  a report by the US National Academy of Sciences in February has already green-lighted research on germline modification, provided it is used only for curing genetic diseases.



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July
29
 

Tennessee judge offers jail credit for sterilization

Every once in a while, someone in the American justice system has a bright idea: offer drug addicts and criminals benefits if they agree to be sterilized. This time it was Sam Benningfield, a judge in central Tennessee. In May he offered inmates in White County a 30-day credit on their sentences if they agreed to have vasectomies or contraceptive implants. It appears that 38 women and 32 men took up his offer.

“I hope to encourage them to take personal responsibility and give them a chance, when they do get out, to not to be burdened with children,” the judge told a local TV station. “This gives them a chance to get on their feet and make something of themselves.”

But when the story broke in the national media, there was an outcry. Critics slammed the plan as unethical because the inmates could not give informed consent.

The American Civil Liberties Union of Tennessee declared that:

“Though the program was technically ‘voluntary,’ spending even a few days in jail can lead to the loss of jobs, child custody, housing and vehicles. To the individual faced with these collateral consequences of time spent behind bars, a choice between sterilization or contraception and a reduced jail sentence is not much of a choice at all. The judge’s order crossed a constitutional line and we are pleased that he rescinded it.”

Facing a media storm, Judge Benningfield rescinded his policy this week.



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July
29
 

Charlie Gard dies in London hospice

Charlie Gard, the 11-month-old terminally ill child whose case has dominated international headlines for months, has died in a London hospice after having life-support withdrawn.

On Thursday a British High Court judge ordered that the child be moved to an unspecified hospice, after no agreement on further treatment could be reached between the boy's parents and Great Ormond Street Hospital.

Gard’s parents had wanted Charlie to be kept alive until close to the 4th of August, which would have been his first birthday. But Gard’s court appointed guardian told the High Court that no hospice could provide care for intensively ventilated children for a long time, so the parents' wish to spend several days with him could not be fulfilled.

Gard suffered from an extremely rare, inherited mitochondrial disease called encephalomyopathic mitochondrial DNA depletion syndrome. The typically fatal condition causes progressive muscle weakness, brain damage, and organ failure. His parents had sought to take Gard to the US for experimental nucleoside therapy, but the High Court ruled in April that it was in the child’s best interests to have life-support withdrawn.



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.

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July
29
 

Human rights group calls for ban on intersex surgery

Human Rights Watch (HRW), an international human rights advocacy group, this week called for a ban on intersex surgery, claiming it subjected intersex children to “irreversible physical and psychological harm”.

The group has produced a report (in conjunction with the intersex activist group InterACT) that assails the practice of intersex surgery and calls on Congress to ban it. The report states that “the results [of intersex surgery] are often catastrophic, the supposed benefits are largely unproven, and there are generally no urgent health considerations at stake”.

The authors of the report challenge traditional binary definitions of a person’s sex, arguing that “sex, in reality, is a spectrum—with the majority of humans appearing to exist at one end or the other. In fact, as many as 1.7 percent of babies are different from what is typically called a boy or a girl.”

Intersex surgery has been practiced in the US since the 1960s, but has been subjected to increasingly vocal criticism in recent years. High profile doctors have condemned the practice, and the American Medical Association is considering a proposal to discourage it.

In 2015 Malta became the first country in the world to outlaw the practice.



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.

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July
29
 

Doctors told to include contraceptive counselling in every adolescent consultation

The American College of Obstetrics and Gynecology (ACOG) has released new guidelines which instruct clinicians to discuss contraceptive options in every consultation with adolescent patients.

The guidance, published by ACOG’s Committee on Adolescent Health Care, recommends that doctors discuss effective contraception methods with patients as young as 13 and at the very first visit.

The document discusses the need to allow adolescents privacy from their parents, and doctors are instructed to ensure patient confidentiality to the extent allowed by State law.

"Contraception should be a conversation with patients as early as appropriate," Dr. Karen R. Gerancher, a member of the committee, said in a statement. "When we're able to reach patients before they become sexually active, or early on in their sexually active life, we empower them to take control of their reproductive health, and prevent sexually transmitted infections and unintended pregnancies that could permanently impact the future they've envisioned for themselves."



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.

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June
24
 

How can neuroethics combat ‘fake news’?

Fake news has a bioethical dimension, argues neuroethicist Neil Levy, in The Hastings Center blog.

Levy, who works at the University of Oxford and the University of Melbourne, argues that media literacy is not going to solve the problem of “fake news”.

For one thing, the response seems to require what it seeks to bring about: a better informed population. For another, while greater sophistication might allow us to identify many instances of fake news, some of it is well crafted enough to fool the most sophisticated (think of the recent report that the FBI was fooled by a possibly fabricated Russian intelligence report).

In Levy’s estimation, the problem is seriously intractable. Efforts to combat fake news with facts and arguments often strengthen false beliefs.

Familiarity – processing fluency, in the jargon of psychologists – influences the degree to which we come to regard a claim as plausible. Due to this effect, repeating urban legends in order to debunk them may leave people with a higher degree of belief in the legends than before. Whether for this reason or for others, people acquire beliefs from texts presented to them as fiction. In fact, they may be readier to accept that claims made in a fictional text are true of the real world than claims presented as factual

If education won’t work, what is to be done? Disappointly Levy says, “I must confess I don’t know.” But he suggests that there should be more research into making true information more palatable through “informational nudges” or “nudges to reason”. This is a topic which he discussed at length in the Journal of Medical Ethics recently. Although he provides no details of what he has in mind, he contends that such nudges would be ethical because they lead people towards the truth:

Perhaps there are nudges that make us more sensitive to genuine evidence that work by bypassing our deliberative capacities, but at least some such nudges appeal to capacities that are partially constitutive of these capacities. There is therefore no more reason to worry that such nudges undermine our autonomy or responsible agency than that arguments generally threaten these things.



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June
24
 

Texas gives green-light for experimental stem-cell therapies

The government of Texas will allow clinics across the state to market unapproved stem-cell therapies, in a move that has met with criticism from bioethicists.

Last week Governor Greg Abbott signed off on the new legislation that allows clinics to by-pass FDA approval for investigational stem cell treatments for patients with certain severe chronic diseases or terminal illnesses. Like “right to try” laws in other States, the Texas legislation will give desperate patients access to therapies that provide hope after traditional medical treatments have failed.

Currently, most patients wishing to have stem-cell therapy have to travel out of the country to receive it. The new law will allow people with severe chronic or terminal illness to be treated at a clinic that purports to isolate therapeutic stem cells from adult tissue—such as a patient’s own fat—if their doctor recommends it after considering all other options, and if it’s administered by a physician at a hospital or medical school with oversight from an institutional review board (IRB). It also requires that the same intervention already be tested on humans in a clinical trial.

The law sanctions a much broader set of therapies than federal rules, which already exempt certain stem cell interventions from FDA’s lengthy approval process, provided the cells are only “minimally manipulated” and perform the same function they normally have in the body.

Bioethicists have expressed their concern at the move, which they say puts patients at risk of the effects of dangerous, untested therapies.

University of Minnesota bioethicist Leigh Turner said he was sceptical about whether the clinics would be adequately monitored, while NYU Langone Medical Center bioethicist Beth Roxland said it was insufficient to have the therapies tested in clinical trials while by-passing FDA approval. “You could gain access to something [as long as it’s] being studied in a human … somewhere on the planet,” Roxland told Science, “which in the stem cell area makes it really very scary.”



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.

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June
24
 

CIA waterboarding was illegal human experimentation: report

Guidelines from the CIA’s Office of Medical Services in December 2004

For years now, the CIA’s “enhanced interrogation” program after 9/11 has been under fire for being torture. The Physicians for Human Rights (PHR) says that it should also be framed as illegal and unethical human experimentation.

According to PHR report released this week, recently declassified documents confirm that the CIA conducted experimental research to test an unsupported hypothesis that torture could break the resistance of detainees and aid interrogation. This research was conducted to support the operation of the “enhanced interrogation” program and to provide legal cover for the use of torture to the Bush administration.

“The CIA torture program was based on the unproven theory that torture could produce compliance and ultimately assist with intelligence collection,” says Sarah Dougherty, the lead author of the report. “Although it was junk science, it was peddled by two psychologists who saw an opportunity to make a profit by setting in motion a crude program of experimentation to study the effects of torture on detainees. Even if this research had been benign, it’s still illegal to perform research without informed consent.”

“Because their torture tactics were wholly unproven – even the CIA previously said torture was counterproductive – [James] Mitchell, [Bruce] Jessen, and nameless others used observations during torture to formulate clinical procedures to modify subsequent torture techniques and guide similar monitoring for future torture sessions,” said PHR’s director of programs, Homer Venters. “Instead of living by the ethical tenet of ‘do no harm,’ health professionals applied their professional skills and engaged in research to aid torture. This was human experimentation on nonconsenting prisoners who were being tortured, a crime within a crime.”

The PHR also claims that health professionals were under pressure from the CIA to generate data to justify torture practices. They were also used to determine the threshold of pain and suffering of the torture subjects, calibrating levels as they progressed. That data was then used by CIA legal counsel to provide legal cover, with the CIA’s lawyers advising officers that such evidence could be used to sidestep criminal prosecution for torture.

“Health professionals were used to give experimental torture practices a false mantle of safety and legitimacy,” says Dougherty. “There’s evidence that CIA personnel recognized that illegal human experimentation was taking place. The CIA’s own contracts with Mitchell and Jessen even referred to the program as ‘applied research.’ Any researcher or health professional even minimally versed in the basics of ethics and professionalism can tell you that such research without consent is completely outside the realm of the acceptable.”  



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June
24
 

Should medics embed with Iraqi Army for safety?

More than 8,000 civilians have been killed in the battle for Mosul, formerly an ISIS stronghold in northern Iraq, since the Iraqi Army launched an assault in November. An estimated 2,000 ISIS soldiers have died, and about 800 of the coalition troops.

But there are also thousands of wounded who are being treated in frontline clinics by a variety of organisations, some commercial outfits, others NGOs sub-contracted by the World Health Organisation. Because the environment is so dangerous, most of them are embedded in the Iraqi Army. When a patient enters, government officials check to see if he is an ISIS militant or sympathiser.

Is this ethical?

The answer given by Jonathan Whittall, of Médecins Sans Frontières/Doctors Without Borders (MSF), is an emphatic No. Whittall is working in Mosul for MSF, which has tried to put itself at arms’ length from the Iraqi Army. “If healthcare is only carried out as a component of the overall military strategy, it undermines the very basis of medical ethics,” he writes in a blog post in the BMJ.

Using health facilities in this way for law enforcement purposes makes health facilities places to be feared and further aligns healthcare to one side of this conflict. This violates the ethical duties that should guide the medical profession and which the World Health Organisation (WHO) adheres to. Yet it is this same WHO that has subcontracted its emergency health programme to these hospitals incorporating the screening practice.

Whittall also fears that this policy will backfire when this war winds down. He writes:

“The potential longer term consequences are also daunting: when the temporary anti-IS alliance of normally opposing armed actors begins to unravel, the perception of humanitarian actors will likely be tainted by this embedding practice. For now it looks like medical assistance serves the interests of the central state (or its foreign backers)—a state many of the armed groups oppose. The security implications of this for all those trying to work in Iraq in the future could be grave.”

Unsurprisingly, Whittall’s point of view was criticised as unrealistic. One of the comments beneath his post reads:

MSF is talking like they are inside the city, when the reality is that they are far away in different villages, without these NGOs MFS would only be receiving body bags. MSF is doing a great job running their field hospital outside of Mosul, but there is a great need for healthcare workers all the way up front to provide emergency medicine and trauma stabilization, a job MSF don't want to do.



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June
24
 

Going commercial with three-parent babies

The same doctor who delivered the first “three parent baby” is now attempting to commercialise mitochondrial replacement therapy (MRT). Dr John Zhang of New Hope Fertility Clinic in New York is now offering MRT for older women suffering from infertility. For roughly US$80,000, women can avail themselves of what New Hope calls "revolutionary technology designed to reverse the effects of age on human oocytes and repair certain cellular defects."

 At the heart of Zhang’s entrepreneurial project is the idea that the cause of infertility in older women is defective mitochondrial DNA. Zhang’s experimental procedure involves inserting the nucleus of an older woman’s oocyte into a young egg with healthy mitochondrial DNA (a procedure known as spindle nuclear transfer). In doing so, he believes he will allow older women to produce viable embryos.

 MRT is currently illegal in the US, so Zhang’s company, Darwin Life, has set up a clinic in Guadalajara, Mexico, where they can perform the procedure. Zhang says his company has already received hundreds of enquiries from prospective patients.

 Many are critical of the new experimental technique.

“This is a biologically extreme and risky procedure,” says Marcy Darnovsky, executive director of the Center for Genetics and Society, a group that questions advances in biotechnology. “If you’re talking about using these techniques for age-related infertility, that’s really moving the human experimentation to a very large scale.”

 Yet Zhang’s plans go much further than treating infertility. He says a future step will be to combine the technique with editing genes, so that parents can select hair or eye color, or maybe improve their children’s IQ. “Everything we do is a step toward designer babies,” Zhang told the MIT Technology Review. “With nuclear transfer and gene editing together, you can really do anything you want.” 



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.

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June
24
 

Transgender puberty blues

The January issue of National Geographic magazine featured profiles of gender-bending young people around the world, from the United States to Samoa. It was surfing a wave of interest in gender dysphoria amongst children. In the United Kingdom, the Gender Identity Development Service, which treats only children under the age of 18, has reported an incredible surge of interest. In 2009/10, 94 children were referred to it, but 1,986 in 2016/17 — an increase of 2,000 percent.

What are parents and doctors supposed to do when children insist that they have been “born in the wrong body”? Or like 9-year-old Oti, another of National Geographic’s case studies: “When she learned to speak, she didn’t say, ‘I feel like a girl,’ but rather ‘I am a girl’.”

Parents are torn.

On one hand, it is ethically questionable whether a child can consent to transitioning to another gender. The teenage brain is still undeveloped; most are not capable of planning beyond next weekend’s party, let alone the rest of their lives. How can 17-year-olds possibly know what it means to be a man or a woman if they have not experienced it? How can a 9-year-old?

But parents want their children to be happy. So often, the solution proposed by doctors and counsellors is “transitioning”. This means affirming the new gender of small children, suppressing puberty as they grow older, and eventually having “gender affirmation surgery” when they reach 17 or 18 or later.

But a stunning new article in the journal The New Atlantis questions the science behind this increasing popular pathway for gender dysphoric kids. The authors are an endocrinologist, Paul W. Hruz, a medical statistician, Lawrence S. Mayer, and a psychiatrist, Paul R. McHugh.

First of all, they contend, despite all the glowing cover stories and TV specials,

There is strikingly little scientific understanding of important questions underlying the debates over gender identity — for instance, there is very little scientific evidence explaining why some people identify as the opposite sex, or why childhood expressions of cross-gender identification persist for some individuals and not for others.

Second, even though children can be very stubborn and persuasive about their conviction that they are in the “wrong body”, most of them do grow out of it. According to the Diagnostic and Statistical Manual of Mental Disorders, the bible of psychiatry, studies show that between 70 and 98 percent of boys do not persist and 50 to 88 percent of girls. So, alarmingly, kids are being treated with hormones and surgery for a condition which they may grow out of naturally.

And third, the central point of their research, the success of puberty suppression is unproven. No clinical trials have been conducted. The cute kids who appeared in National Geographic are basically research subjects in a potentially dangerous experiment. “Regardless of the good intentions of the physicians and parents, to expose young people to such treatments is to endanger them,” say the authors.

As they point out, “Experimental medical treatments for children must be subject to especially intense scrutiny, since children cannot provide legal consent to medical treatment of any kind (parents or guardians must consent for their child to receive treatment), to say nothing of consenting to become research subjects for testing an unproven therapy.”

Supporters of puberty suppression claim that it gives children space to explore their sexuality. Professor Art Caplan, the most quoted bioethicist in the American media, has said that “if it’s decided to stop the treatment, puberty will resume.” Norman Spack, of Boston’s Children Hospital, a renowned expert on gender dysphoria, describes the effect of the drugs as “totally reversible.”

But the authors dismiss the notion of “reversibility” as a myth. We cannot turn back the clock.

If a child does not develop certain characteristics at age 12 because of a medical intervention, then his or her developing those characteristics at age 18 is not a “reversal,” since the sequence of development has already been disrupted. This is especially important since there is a complex relationship between physiological and psychosocial development during adolescence. Gender identity is shaped during puberty and adolescence as young people’s bodies become more sexually differentiated and mature. Given how little we understand about gender identity and how it is formed and consolidated, we should be cautious about interfering with the normal process of sexual maturation.

There is very little evidence for resumption of completely normal development after puberty suppression. “There certainly have been no controlled clinical trials comparing the outcomes of puberty suppression to the outcomes of alternative therapeutic approaches [and] there are reasons to suspect that the treatments could have negative consequences for neurological development.” In boys there is some evidence that puberty suppression may be associated with testicular cancer and obesity.

The claim that puberty-blocking treatments are fully reversible makes them appear less drastic, but this claim is not supported by scientific evidence. It remains unknown whether or not ordinary sex-typical puberty will resume following the suppression of puberty in patients with gender dysphoria. It is also unclear whether children would be able to develop normal reproductive functions if they were to withdraw from puberty suppression. It likewise remains unclear whether bone and muscle development will proceed normally for these children if they resume puberty as their biological sex. Furthermore, we do not fully understand the psychological consequences of using puberty suppression to treat young people with gender dysphoria.

So, the authors contend, the mantra that puberty suppression is “totally reversible” may be close to being totally bunk.

Modern medicine prides itself on rigorous testing of hypotheses, careful analysis of ethical issues, and diligence in follow-up studies. This is what differentiates it from the hexes of witchdoctors and the nostrums of snake oil salesmen. But when it comes to gender dysphoria, they claim, the profession is ignoring the most elementary requirements of good science. As the authors point out:

Physicians should be cautious about embracing experimental therapies in general, but especially those intended for children, and should particularly avoid any experimental therapy that has virtually no scientific evidence of effectiveness or safety. Regardless of the good intentions of the physicians and parents, to expose young people to such treatments is to endanger them.

This study is the most significant push-back to date against the conventional wisdom about children who want to transition to a different gender. The conclusions reached by Hruz, Mayer, and McHugh will be bitterly disputed; they will be smeared on Twitter as transphobic bigots, shills for conservative think tanks and mediocre scientists. That’s the way that debate on this issue is normally conducted at the moment. But it will be interesting to see how transgender experts deal with the ethical issues they have raised. 

Michael Cook is editor of MercatorNet. 



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.

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June
24
 

A Dutch euthanasia pioneer surveys the wreckage and despairs

If there is anyone who could be called a patron saint of Dutch euthanasia, it is the psychiatrist Boudewijn Chabot. In 1991 he gave one of his patients, Mrs B, a lethal dose of medication. After accompanying her until she died he reported himself to the police and was subsequently tried. In 1993, the Supreme Court declare that he was guilty of assisting a suicide, but did not punish him and allowed him to keep practicing medicine.

Physically, there was nothing wrong with Mrs B. Nor did she have depression. But her personal life was tragic and Dr Chabot felt that she in a state of existential distress that she should be allowed to die. It was a landmark case in the steady advance towards legalisation in 2002.

That was 25 years ago. Now Dr Chabot looks back and is horrified. Writing in one of the leading Dutch newspapers, NRC Handelsblad, he says that legal safeguards for euthanasia are slowly eroding away and that the law no longer protects people with psychiatric condition and dementia.

The Dutch are complacent about their famous law, he says. But there is no room for complacency.

Under current legislation, euthanasia is only legal if a doctor believes that three conditions have been met: (1) the request must be voluntary and deliberate; (2) there must be unbearable suffering with no hope of improvement; and (3) there must no reasonable alternative to euthanasia.

However, as euthanasia has sunk its roots deeper and deeper into Dutch medicine, the second and third conditions have shrivelled up. Patients define what is unbearable and they define what is a reasonable alternative. Unhappiness can be unbearable and a nursing home may not be a reasonable alternative. So, as one ethicist has observed, requirements (2) and (3) “add little to the requirement of a voluntary and thoughtful request”. Autonomy has trumped medicine. As a result, the number of euthanasia cases roughly tripled between 2007 and 2016, from 2000 to 6000.

In itself, this does not bother Dr Chabot. After all, he is the Grand Old Man of Dutch euthanasia. He says that he is prepared to accept tens of thousands of euthanasia cases. But he is aghast at the rapid rise in the number of people with psychiatric illness or dementia who have been euthanised:

What does worry me is the increase in the number of times euthanasia was performed on dementia patients, from 12 in 2009 to 141 in 2016, and on chronic psychiatric patients, from 0 to 60. That number is small, one might object. But note the rapid increase of brain diseases such as dementia and chronic psychiatric diseases. More than one hundred thousand patients suffer from these diseases, and their disease can almost never be completely cured. 

One sign of the changing times is the rapid expansion of the services of the End of Life Clinic Foundation (Stichting Levenseindekliniek). This organisation offers euthanasia to patients whose own doctors have refused. They never offer to treat the underlying illness, whether it is physical or mental.

By 2015, a quarter of euthanasia cases on demented patients were performed by these doctors; in 2016 it had risen to one third. By 2015, doctors of the End of Life Clinic performed 60 percent of euthanasia cases in chronic psychiatric patients, by 2016 that had increased to 75 percent (46 out of 60 people).

Last year, Dr Chabot points out, doctors from the End of Life Clinic each performed about one euthanasia every month. “What happens to doctors for whom a deadly injection becomes a monthly routine?” he asks.

Now the End of Life Clinic is recruiting psychiatrists to service the mentally ill and demented. One obvious problem is that there is a shortage of good psychiatric help in the Netherland – which tends to take a long time have an effect, in any case – because of budget cuts.

Without a therapeutic relationship, by far most psychiatrists cannot reliably determine whether a death wish is a serious, enduring desire. Even within a therapeutic relationship, it remains difficult. But a psychiatrist of the clinic can do so without a therapeutic relationship, with less than ten ‘in-depth’ conversations? Well …

Dr Chabot is deeply sceptical about euthanasia for the demented: “we are dealing with a morally problematic act: how do you kill someone who does not understand that he will be killed?”.

How? It turns out that sometimes a relative or doctor secretly laces their food or drink with a sedative to make it easier to give them a lethal injection. In one notorious case last year, the sedative didn’t work and relatives pinned the terrified woman to the bed while the doctor gave the lethal injection. Dr Chabot was astonished to discover that “surreptitious administration of medication has previously occurred, but has never been mentioned in an annual report.”

Isn’t anyone paying attention to these developments, Dr Chabot asks.

The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.

After surveying the wreckage of the euthanasia law, Dr Chabot concludes bitterly,

I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.

Michael Cook is editor of BioEdge. Dr Chabot’s original article in NRC Handelsblad was translated by Professor Trudo Lemmens, of the University of Toronto Faculty of Law. Excerpts have been republished from his blog with permission.



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.

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June
24
 

Medical students’ perspectives on euthanasia

What do medical students think about euthanasia? A new article in the journal Chest discusses some of the concerns held by the next generation of US medical professionals.  The authors of the paper, students from several of the leading medical schools in the country, express grave concerns about the normalisation of euthanasia in end-of-life care.

Commenting on new legislation introduced in US states such as Colorado, the authors remark:

The sum of these new laws and rulings strongly conveys the impression that once a person is eligible for hospice, his or her life may no longer have worth, and a “healthy” and “reasonable” thing to do is to request to end one’s own life. We reject this proposed shift of the true purpose of medicine, and we reject the pressure to legitimize this shift through the involvement of medical professionals in an act fundamentally antithetical to our core ethical principles.

Doctor-patient trust, the authors assert, is founded upon the notion that doctors “will commit to doing their best to heal and care for patients and will not intentionally kill those entrusted to their care”. The students fear that PAS/E violates the fundamental bond of trust.

Indeed, the authors call upon doctors to return to the original meaning of euthanasia:

“In its first studies in the 19th century, "euthanasia" was originally defined as focusing on improving patients' quality of life and easing the process at the end of life, but never at the expense of promoting practices which could hasten a patient's death. We strongly implore our present and future colleagues to return to this original definition.”

The American Medical Student Association currently has a position of conditional support for physician aid in dying.



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.

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June
17
 

An urgent need for palliative care as the world turns grey

Is the developed world prepared for the avalanche of elderly people who will die of cancer and dementia? A report in the journal BMC Medicine says No.

About 75% of people approaching the end of their lives would benefit from palliative care services. But after crunching the numbers, researchers at the Cicely Saunders Institute at

King’s College London have concluded that England and Wales are woefully unprepared for a 42% increase -- 160,000 people a year -- requiring palliative care in 2040 as the population ages.

Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need.

They point out that this is a world-wide trend. Even in developed countries, there is not enough access to palliative care, with the number of providers varying from 5 to 680 per million population. “Overall, only a minority who need palliative care, perhaps as low as 14%, receive it,” they note.

What is needed to prepare this situation? First, “a massive increase in training of specialist nurses and physicians” right now. Second, a huge increase in geriatric training for healthcare providers. “It takes at least 9 years to train a community geriatrician, and so workforce planners need to act now,” they point out. Third, a change in focus towards caring for patients with dementia will be needed.

Professor Irene Higginson, a co-author, says:

"There is an urgent need to act now to transform health, social and palliative care services to meet the projected growth in palliative care need. More attention should be given to the needs of people and those close to them when facing progressive illness, particularly those dying from chronic and complex illnesses, and age related syndromes such as frailty and dementia. There is a need to support their families, who shoulder so much of the care. The way in which we provide health care, and palliative care will need to change.”

Unmentioned by the researchers is the impact of this grey wave on end-of-life debates. Unless the sick and elderly are well cared for at the end of their lives, legalised assisted suicide and euthanasia could very well seem like a plausible and cheaper alternative. 

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June
17
 

Autonomy: a short history of a big idea

“The strongest arguments in favour of physician-assisted suicide are respect for autonomy, justice, compassion, honesty, individual liberty and transparency.” This is a sentence drawn from a press release issued by the European Society of Anaesthesiology, which debated PAS at a conference in Geneva earlier this month. But it could have come from almost any medical ethics textbook. Respect for autonomy is a cornerstone of contemporary bioethics – and like all good cornerstones, it is firmly fixed and seldom tested.

However, an historical account of the notion in the journal Medicine, Health Care and Philosophy questions whether it is necessary or coherent or beneficent. Toni Saad, of the Cardiff University School of Medicine, in Wales, concludes that:

it is not necessary to embrace an ethic of autonomy in order to guard patients from coercion or paternalism, and that, on the contrary, the dominance of autonomy threatens to undermine those very things which have helped doctors come to view and respect their patients as persons.

This is a daring attack on a deeply entrenched principle, one which will require many salvos to demolish, but Saad makes a good fist of it.

First, he points out that the Hippocratic tradition in ancient medicine contained the germ of the notion of the modern notion of autonomy; it was not completely paternalistic and chauvinistic. For instance, there is evidence that disclosure of information, choice of physicians, informed consent and medical truth-telling were all present in the practice of good physicians. “This suggests that a conscious awareness of the concept of autonomy is not always necessary for good medical practice.”

In the most substantial part of the essay Saad examines the Enlightenment legacy of Rousseau, Kant, and J.S. Mill. This is too complex and lengthy to summarise here, but the upshot is that the hallmark of authentic moral actions was free choice, not the content of the action.

Thus, logical inconsistency becomes the only immorality, and distaste for inconsistency the measure of morality; rationality has no content beyond itself; ethics is reduced to reason and must therefore remain agnostic about what is good and evil.

He then moves on to the post-War development of bioethics, which originated in the worlds horror at Nazi atrocities. The Nuremberg Code is a key document which stresses the importance of free and informed consent.

A key figure in the bioethics of the 1970s was Paul Ramsey, who was “unabashedly Christian” and set the agenda for later developments – suggesting, too, that “autonomy” may not be needed as a guarantor of good medical care. However, his influence faded with the widespread popularity of the four elements of Beauchamp and Childress’s principlism in the 1980s. They “emptied the words ‘respect’ and ‘person’ of their meaning, so that autonomy per se becomes that which is respected, not persons.” Although their framework appeared merely to enshrine conventional ethical views, Saad argues that it made autonomy central. It “possesses the seeds of its own destruction because so little cannot be justified by appeal to [respect for autonomy]” – from organ retrieval from living patients to limiting conscientious objection.

Although competing ethical traditions exist, respect for autonomy has quickly become the dominant ethical framework. Why? Saad fingers moral fragmentation:

Bioethics, with its emphasis on autonomy, is the inheritor of an increasingly thinning concept of human goods. Thus, the principle of RFA and its tendency to dominate contemporary ethical discourse is symptomatic of an atrophied conception of human flourishing, and a consequent shift towards formally rational debate.  Since theorists cannot agree on what is good, they will reach for the few remaining available principles, and thereby lock themselves in to a formally rational and inevitably reductive debate. This is the ground upon which autonomy ethics flourishes. Indeed, nothing but autonomy can grow upon this soil, which means the inevitable decimation of diversity in bioethical discourse, and maybe even moral famine.

It is a fascinating essay which deserves to be widely read. 

Like our coverage of bioethics? If so, could we ask you for a favour? BioEdge takes a lot of time and hard work to produce. We do it because we think that our readers deserve to get the full picture of complex issues like surrogacy, euthanasia and stem cell research. We try to offer ideas to ponder and debate. To continue enhancing the conversation we need your support.

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June
17