May
20
 

Is salt bad for you? Let’s feed prisoners low-salt food and see

A group of medical researchers has proposed a clinical trial in American prisons to test whether too much salt is bad for you. In an editorial in the journal Hypertension the researchers argue that major professional associations believe that a randomized clinical trial in a controlled environment is needed to settle the matter once and for all.  

The “controlled environment” is very difficult to create for “free-living” people, the editorial says, because most people eat processed food at home at dine out at restaurants. The idea of asking participants to eat only prepared meals containing set amounts of sodium is unrealistic.

What environments might be suitable? The military, nursing homes and retirement communities were suggested and discarded. But prisons, especially federal prison, seem almost ideal.   

The ethics of clinical trials on prisoners is a fraught area, with many abuses in the past. However, the authors of the editorial are optimistic.

Preliminary conversations with leadership of prison systems have been enlightening and helpful. A review of the idea by a prisoner rights ethics expert and initial engagement with potential funders have been encouraging.

However, the ethical difficulties remain. “Consent means something very different in the prison environment,” Marc Morjé Howard, the director of the Prisons and Justice Initiative at Georgetown, told The Atlantic. Prisoners who participate so they can get access to health care or to stay on the right side of prison authorities may not be choosing freely.

“It’s hard to overstate the importance of food in prisons,” says Keramet Reiter, a criminologist at the University of California at Irvine. Food is a major ingredient of happiness in prisons. It even serves as currency. Changing to a bland, low-salt diet could lead to major disruption.  

At the moment, the study is no more than an idea. “Broadly, we’re looking for advice on whether this is an insane idea,” one of the researchers told The Atlantic. “Or whether it’s something that experienced people think might be achievable.”



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May
20
 

Guernsey rejects assisted suicide

A back door to assisted suicide and euthanasia in the United Kingdom has been closed. After a three-day debate, the Parliament of Guernsey, a British Crown dependency in the English Channel, has voted 24-14 to reject an Oregon-style bill for assisted suicide.

The proposal was a private member’s bill proposed by Guernsey’s chief minister, Gavin St Pier. He released a statement expressing his regret that the measure had not passed:

"We believe that a majority of the population do support a change in the law. However, we live in a representative democracy and our parliamentary assembly, the States of Deliberation, has by majority, made a democratic decision which settles the matter in Guernsey."

“We, of course, accept that decision. We remain of the view that this is an inevitable change which in the fullness of time Guernsey will one day adopt. However, that is matter for our parliamentary successors, not us."

The proposal was modelled on the law in the US state of Oregon, meaning that applicants for assisted suicide should have a diagnosis of terminal illness with less than six months to live and full mental capacity. People from other parts of the United Kingdom would not be able to travel to Guernsey for “suicide tourism”.



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May
20
 

US states could use nitrogen to execute prisoners

Underground methods of illegal assisted suicide could be used as a model for capital punishment in the United States. The New York Times reports that states are looking for alternative methods of executing prisoners after some of them suffered greatly during lethal injections.

One solution is inhaling nitrogen, a method promoted by groups like the Final Exit Network in the US and Exit International in Australia. Nitrogen is not poisonous in itself, but in the absence of oxygen, a person will suffocate painlessly.

Oklahoma, Alabama and Mississippi allow nitrogen to be used for executions. Although there has been no scientific research into its use as a method of dispatching humans, there is anecdotal evidence from industrial accidents and from assisted suicide groups. Apparently it does not lead to the feeling of suffocation which comes from a build-up of carbon dioxide in the lungs.  

An Arizona company reportedly has prepared a gas chamber which will work with nitrogen. Its product is called a “euthypoxia chamber” which is supposed to be pain-free and mistake-free. It guaranteed “the demise of any mammalian life within 4 minutes.”

“If and when states begin carrying out executions with nitrogen, it will amount to the same type of experimentation we see in the different variations of lethal injection,” Jen Moreno, a lawyer with Berkeley Law Death Penalty Clinic told the New York Times.



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May
20
 

Nuffield Council releases study of AI in healthcare

AI in healthcare is developing rapidly, with many applications currently in use or in development in the UK and worldwide. The Nuffield Council on Bioethics examines the current and potential applications of AI in healthcare, and the ethical issues arising from its use, in a new briefing note, Artificial Intelligence (AI) in healthcare and research.

There is much hope and excitement surrounding the use of AI in healthcare. It has the potential to make healthcare more efficient and patient-friendly; speed up and reduce errors in diagnosis; help patients manage symptoms or cope with chronic illness; and help avoid human bias and error. A number of AI applications are already in use:

  • Early detection of infectious disease outbreaks and sources of epidemics, such as water contamination.
  • Prediction of adverse drug reactions, which are estimated to cause up to 6.5% of hospital admissions in the UK.
  • Information tools or chat-bots driven by AI are being used to help manage chronic medical conditions.
  • Robotic tools controlled by AI have been used in research to carry out specific tasks in keyhole surgery, such as tying knots to close wounds.
  • Analysing speech patterns to predict psychotic episodes and identify and monitor symptoms of neurological conditions such as Parkinson’s disease
  • Analysing medical scans.

But there are some important questions to consider: who is responsible for the decisions made by AI systems? Will increasing use of AI lead to a loss of human contact in care? What happens if AI systems are hacked? The Nuffield Council briefing note outlines the ethical issues raised by the use of AI in healthcare, such as:

  • the potential for AI to make erroneous decisions;
  • who is responsible when AI is used to support decision-making?
  • difficulties in validating the outputs of AI systems;
  • the risk of inherent bias in the data used to train AI systems;
  • ensuring the security and privacy of potentially sensitive data;
  • securing public trust in the development and use of AI technology;
  • effects on people's sense of dignity and social isolation in care situations;
  • effects on the roles and skill-requirements of healthcare professionals; and
  • the potential for AI to be used for malicious purposes.

The briefing note outlines some of the key ethical issues that need to be considered if the benefits of AI technology are to be realised, and public trust maintained. The challenge, says the Nuffield Council, will be to ensure that innovation in AI is developed and used in ways that are transparent, that address societal needs, and that are consistent with public values.



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May
19
 

California judge overturns assisted suicide

A California judge has sparked uproar after ruling that the state’s assisted suicide law was unconstitutional.

On Tuesday, Judge Daniel A. Ottolia of the Riverside County Superior Court ruled that the 2015 End of Life Option Act was passed in an unconstitutional manner, and gave the California Attorney General Xavier Becerra five days to file an appeal before the law was invalidated.

Importantly, Judge Ottolia’s decision did not pertain to the content of the Act, but rather to the manner in which was enacted.

Ottolia said that the summer 2015 extraordinary session of the California Legislature in which the bill was enacted was supposed to be limited to matters of health finance; assisted suicide legislation falls outside of the domain of health finance. The scope of the special session was outlined in a Proclamation by California governor Jerry Brown, who later that year signed the bill into law. Assisted suicide is not mentioned in the Proclamation.

Opponents of the End of Life Option Act welcomed the decision.

“We're very satisfied with the court's decision today," said Stephen G. Larson, lead counsel for a group of doctors who sued in 2016 to stop the law. "The act itself was rushed through the special session of the Legislature and it does not have any of the safeguards one would expect to see in a law like this”.

But supporters of the Act were scathing of the decision. Assemblywoman Susan Talamantes Eggman, the Stockton Democrat who carried the bill, said Californians who are in the process of obtaining life-ending drugs through the law have had "the carpet ripped out from under their feet”.

End-of-Life law expert Thaddeus Pope believes that the decision is questionable. Pope wrote in a recent blog post:  

...the Governor’s Proclamation mentioned both healthcare finance and healthcare generally. Therefore, pursuant to state supreme court precedent that interprets the special session clause of the constitution, the legislature had the power to enact “any” healthcare related legislation during the special session. It strains credulity to suggest that the End Of Life Option Act, which focuses on regulating physician-patient interactions, does not relate to healthcare.  

Attorney General Xavier Becerra said that he strongly disagreed with the ruling, and that he plans to file an appeal.



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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May
19
 

Vote narrows as Ireland’s abortion referendum approaches

Tensions are rising as Ireland’s 25th of May abortion referendum approaches, with polls indicating a narrowing gap between the “repeal” and “retain” vote.

An Irish Times/Ipsos MRBI poll earlier this week found that out of 1200 respondents interviewed face to face across the country, 44 per cent of said they would be voting Yes (down 3 points in three weeks), 32 per cent said No (up 4 points) and 24 per cent said they were either not sure or not voting. When one excludes those who are unsure and those who are not voting, the Yes side leads by 58 to 42.

Politicians and commentators say that, while the yes campaign has a commanding lead, the vote is not a foregone conclusion.

Minister for Health Simon Harris, an outspoken critic of the 8th amendment, told the “repeal” campaign to intensify its efforts. “Do not look back on Saturday week and think ’I wish I did more’, ’I wish I voted’ or ’I wish I rang that friend’...Leave nothing behind you”.

In an article on Sky News, Pro-life campaigner Katie Ascough encouraged voters “not to be fooled” by the rhetoric of the “repeal” campaign:

I understand that some people reading this agree with abortion in certain, restrictive, and rare cases, but please know that is simply not what the Irish government is proposing.

Our government is currently proposing abortion on demand. We could have been having a different conversation about a more limited abortion proposal, but that is not what our government has chosen to present us with.

The campaign has gained increasing attention from the international media, with lobby groups and international organisations attempting to influence the vote.

Facebook has banned “foreign advertisements” pertaining to the vote, while Google has banned all ads whatsoever, regardless of whether they are from within the country or without. Facebook said it wanted to “protect the integrity of election and referendums from undue influence”.

The “Save Both” campaign argue that this move unfairly favours the “repeal” campaign.

Laoise Ní Dhubhrosa of London Irish United for Life was very critical of the decision:

“This is a very worrying development. Our experience has been that traditional media in Ireland is extremely biased against the pro-life position; most of the Irish newspapers have an editorial stance in favour of repealing the Eighth Amendment. In that context, pro-life groups have to rely on new media, including online ads, to get their message out there. The referendum requires an open democratic debate, not one in which content is censored and shut down on dubious grounds.”


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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May
19
 

What should a doctor do when a loved one is ill?

The American Medical Association’s Code of Medical Ethics strongly cautions doctors against treating themselves or family members. It outlines a series of reasons why doctors can lose their objectivity and professionalism when treating immediate family, and also enumerates reasons why patients can find it difficult to have a relative as a doctor.

But what about situations where a doctor is the primary caregiver for a patient? Or what about situations where a doctor feels uncomfortable when they hear about the way in which a relative is being treated.

A new edition of the journal Narrative Inquiry in Bioethics looks at these and other questions, drawing upon testimonies of a range of clinicians who have found themselves torn between family obligations and their professional roles.

In one essay doctor David Alfandre tells a personal story of when his two-year-old son was admitted to hospital with severe pneumonia. Alfandre had to be at his son’s bedside for weeks while the boy’s oxygen levels and general condition fluctuated -- at one point the child was rushed to intensive care. He was very tempted to play the role of a doctor, but eventually decided to be first and foremost a father to his son, letting the treating team make decisions.

Alfandre said he has learned a lot from the experience, but is still unsure how to square his professional identity with his role as a father and a caregiver:

I still have not figured out how to perfectly calibrate the balance between my two identities. The doctor identity pulls at me strongly one day, and the father identity the day after that. Sometimes they both pull at me at the same time. It is still a struggle, but I now know to pay close attention to see which one I need more.

In another essay, Dr Jessica Turnbull tells the story of her uncle Dan’s final months, in which she battled with allowing a care team to make decisions about the man rather than attempting to influence their clinical judgements. Sadly, Turnbull’s uncle died in much pain, and she suggests that she should have been more forthright with his treating clinicians:

...This story ends badly because in my reflex to remain objective, I lost the opportunity to just spend quiet, unthinking, unpressured time with my uncle. This story ends badly because I abdicated my role as a physician and lost my ability to be in the role of a loved one, supporting my uncle at the end of what was a fantastic life.


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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May
19
 

New documentary tells personal story of VSED

 

A new American documentary, Tomorrow Never Knows, tells the story of a transgender person with early onset Alzheimer's who decided to end his life through “voluntarily stopping eating and drinking” (VSED).

64-year-old Shar (Tim) Jones died on the 1st September 2016 in his home in Denver, Colorado, after consciously refusing nutrition and hydration. Jones had early onset Alzheimer’s, though he was not suffering from a terminal illness. He chose VSED because he couldn’t stand the thought of cognitive decline: “Alzheimer's destroys your being”, he says in the film’s trailer. “There will come a point where I won’t even know who I am”.

At the time of his death, assisted suicide was not legal in Colorado, and even today it is not available for people without a terminal illness.

The documentary focuses primarily on Shar’s final days as he lies dying in bed, surrounding by a veritable shrine of objects reflective of his alternative Buddhist spirituality. His partner Cynthia Vitale waits with him as his breathing becomes more laboured.

The film’s producers say the documentary is “an evocative, contemplative work directed at educating and humanizing what it means to be transgender and what it's like living with Alzheimer's Disease”.

Yet its content will be very confronting for some viewers. The film does not attempt to sanitise the painful final moments of Shar’s life, and it even includes a scene of Cynthia preparing Shar’s stiff, dead body for cremation. There are also broader questions about the limits of choice and the psychology of suicide. For many, Shar’s death would be no cause for celebration.



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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May
13
 

American Medical Association stands firm on assisted suicide

“Death with dignity” or “aid in dying” seem to be gathering pace in the United States, now that Hawaii has joined the list of states which permit it. But how does the American Medical Association stand?

According to a recent decision by its Council on Ethical and Judicial Affairs, squarely against it.

The AMA has been under pressure to modify its stand. The American 
Academy of Hospice and Palliative Medicine 
has adopted a position of “studied neutrality”. Physicians from Oregon are lobbying within the AMA for neutrality, if not outright endorsement.

The CEJA studied the growing literature on “death with dignity” and recently issued a report which gave it a resounding thumbs-down.

In report 5-A-18, the CEJA declared firmly that

in its current form the Code offers guidance to support physicians and the patients 
they serve in making well-considered, mutually respectful decisions about legally available options 
for care at the end of life in the intimacy of a patient-physician relationship. The Council on Ethical 
and Judicial Affairs therefore recommends that the Code of Medical Ethics not be amended. 


The tone of the report was studiously calm and respectful. It acknowledged that “thoughtful, morally admirable individuals hold diverging, yet equally deeply held, and 
well-considered perspectives about physician-assisted suicide”.

However, it made several pointed observations.

Terminology is important. Should a doctor’s participation in a patient’s death be called “assisted suicide,” “physician assisted suicide”, “aid in dying,” or “death with dignity”? The CEJA insists that the term should be “assisted suicide”. Why?

“ethical deliberation 
and debate is best served by using plainly descriptive language. In the council’s view, despite its 
negative connotations, the term “physician assisted suicide” describes the practice with the 
greatest precision. Most importantly, it clearly distinguishes the practice from euthanasia. The 
terms “aid in dying” or “death with dignity” could be used to describe either euthanasia or 
palliative/ hospice care at the end of life and this degree of ambiguity is unacceptable for providing 
ethical guidance.” 


Neutrality is out. From an ethical point of view, “studied neutrality” is a way of escaping from “irreconcilable differences”. Instead of debating issues, they are ignored. But the CEJA notes that “studied neutrality has been criticized as being open to 
unintended consequences, including stifling the very debate it purports to encourage or being read 
as little more than acquiescence with the contested practice”. 


The evidence suggests that there are “unintended consequences”. Supporters of “death with dignity” argue that claims that physician-assisted suicide is hard to manage and puts society on a slippery slope are “flawed, inadequate, or distorted” 
But the CEJA believes otherwise. “Current evidence from Europe does tell 
a cautionary tale,” it says. Fears of euthanasia for psychological problems, the slippery slope, lack of government control. The report says:

Medicine must also acknowledge, however, that evidence (no matter how robust) that there have 
not yet been adverse consequences cannot guarantee that such consequences would not occur in the 
future. As a recent commentary noted, “[p]art of the problem with the slippery slope is you never 
know when you are on it” 




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May
13
 

CIA nominee refuses to call torture ‘immoral’

Should Americans brace themselves for more reports of torture in the war on terror? This is what opponents of Gina Haspel, President Trump’s nominee as head of the CIA, fear. Physicians for Human Rights issued a stinging press release:

“Torture is illegal, immoral, and profoundly harmful, not only for its victims but for all institutions involved. Promoting Haspel to CIA director would cement impunity for torture and weaken the United States’ longstanding commitment against this crime. To uphold the progress that Congress has made to put this dark chapter to rest, the Senate must now follow through by rejecting Haspel’s nomination.”

Haspel, who is currently the acting director, was interrogated by Senate Intelligence Committee as part of the nomination process. She was studiously evasive on the topic of the morality of torture. Here is an excerpt from her interchange with California’s Senator Kamala Harris:

Harris: “Do you believe that the previous interrogation techniques were immoral?” 

Haspel: “Senator, I believe that the C.I.A. did extraordinary work to prevent another attack on this country, given the legal tools that we were authorized to use.”

Harris: “Please answer yes or no. Do you believe, in hindsight, that those techniques were immoral?”

Haspel: “Senator, what I believe sitting here today is that I support the higher moral standard we have decided to hold ourselves to.” 

Harris: “Could you please answer the question?”

Haspel: “Senator, I think I’ve answered the question.”

Harris: “No, you’ve not. Do you believe they are immoral? Yes or no?”

Haspel: “Senator, I believe we should hold ourselves to the moral standard outlined in the Army Field Manual.”

It was a sterling performance in both evasion and legal positivism. It does not inspire confidence that the CIA – and its doctors, nurses, medics and psychologists -- will, for better or worse, become choir boys.

Senator John McCain, who was a victim of torture himself in the Vietnam War, said “Her refusal to acknowledge torture’s immorality is disqualifying.” But former Vice-President Dick Cheney declared his support for Haspel. “I think the techniques we used were not torture. A lot of people try to call it that, but it wasn’t deemed torture at the time. People want to go back and try to rewrite history, but if it were my call, I’d do it again.”



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May
13
 

Iceland dumps proposed ban on male circumcision

After a three-month national debate and lobbying from all over the world, a parliamentary committee in Iceland has shelved a proposed ban on male circumcision. The penalty for performing or organising a circumcision would have been a sentence of up to six years in prison.

The ban was proposed in February by Silja Dögg Gunnarsdóttir of the Progressive Party in the Althing, Iceland’s parliament. She described her bill as an attempt “to protect the interest of the child”. Circumcision of females had already been banned, she reasoned, why not of males? “Every individual, it doesn’t matter what sex or how old… should be able to give informed consent for a procedure that is unnecessary, irreversible and can be harmful,” she declared. “His body, his choice.”

Incredibly, Ms Gunnarsdóttir failed to consult Iceland’s tiny Jewish and Muslim communities and did not anticipate the uproar that ensued. “I didn’t think it was necessary to consult,” she told The Independent. “I don’t see it as a religious matter. Jews are welcome in Iceland. But this is about child protection and children’s rights. That comes first, and before the religious rights of the adult.”

Icelanders were divided. Polling showed that 50 percent favoured the bill and 37 percent opposed it, with the remainder undecided. Local religious leaders campaigned against it.

Some inconsistencies emerged. Intersex children are routinely operated upon, but without their consent. The bill cited the UN Convention on the Rights of the Child but Iceland has sometimes deported children born in Iceland without respecting their rights.

The bill appears to have sunk because lobbyists successfully stoked fears of religious discrimination. “The impact of this would be felt far beyond Iceland’s borders,” said a letter from the US House of Representatives Committee on Foreign Affairs. “This move would make Iceland the first and only European nation to outlaw circumcision. While Jewish and Muslim populations in Iceland may be small, your country’s ban would be exploited by those who stoke xenophobia and antisemitism in countries with more diverse populations.”

However, two bioethicists writing in the Oxford University blog Practical Ethics, Lauren Notini and Brian D. Earp, suggested that religious reasons for male circumcision are probably not justifiable: “Parental religious rights are not unlimited”. They argue that:  

Non-therapeutic genital cutting deprives the child, and the adult they will become, of the opportunity to remain genitally unmodified (or intact). Plausibly, the person whose ‘private parts’ will be permanently affected by the cutting should get a chance to weigh in on whether that is what they desire, in light of their longer-term preferences and values ...

However, the less clear it is that a bodily encroachment is in fact in the child’s best interests—considering the child’s strong interest in being able to autonomously make important self-affecting decisions in the future—“the more likely it is that the child’s bodily integrity rights are being impermissibly violated.”



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May
12
 

13 year old regains consciousness after parents sign organ donation forms

A 13-year-old American boy has regained consciousness after his parents had agreed to have life support turned off and his organs donated.

Trenton Mckinley from Mobile, Alabama, was in a comatose state after suffering severe head injuries when he was hit on the head by a flipped trailer. The boy had undergone several craniotomy surgeries, but had suffered kidney failure and cardiac arrest, and doctors believed that he would “never be normal again”. Doctors had talked to the family about donating five of Trenton’s organs that suited five other children, and the family had agreed to have the organs donated.

Yet just a day before he was due to have his life-support turned off, the boy began to regain consciousness. While he is still recovering gross motor skills and will need several operations to repair his fractured skill, Trenton is now able to communicate without trouble and has even been making jokes with reporters. The boy told reporters that he was in heaven while he was unconscious. "I was in an open field walking straight," he said. "There's no other explanation but God. There's no other way. Even doctors said it”.



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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May
12
 

Spain to consider euthanasia laws after citizens initiative fails in Finland

Spain’s national parliament has voted to consider a bill that would legalise euthanasia and assisted suicide in the country, though the prospects of legalisation succeeding are slim.

Parliamentarians voted 175-136 in favour of examining the bill, with 32 abstentions. The ruling Partido Popular opposed the examination of bill, while a series of smaller left-leaning parties supported it.

The bill seeks to alter article 143 of Spain’s criminal code, which currently prohibits assisting another person in ending their life. It would legalise euthanasia and assisted suicide for people with a terminal and incurable illness.

The Spanish decision comes in the wake of the decision of Finland’s national parliament (Riksdag) to reject a citizens’ initiative to legalise euthanasia. The proposal was resoundingly defeated 128 to 60, though parliamentarians agreed to set up a working group to investigate legislation surrounding end of life care.



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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May
12
 

Malta debates IVF

The predominantly Catholic country of Malta is debating legislation that would liberalise its restrictive IVF laws and legalise altruistic surrogacy.

The Embryo Protection (Amendment) Bill, which seeks to amend the 2012 Embryo Protection Act, has been fiercely debated in parliament, with critics saying that it fails to protect human embryos. Nationalist MP Simon Busuttil, who addressed parliament during a second reading of the bill, said that the proposed legislation was unnecessary and potentially demeaning for women. Summarising his speech, he said:

“...I am against embryo freezing because, in oocyte vitrification, we already have a viable alternative that does not pose ethical pitfalls...I am against surrogacy which, all feminists agree, amounts to nothing short of exploitation of women. In fact, surrogacy is being banned in countries like Sweden regardless of whether it is commercial or altruistic”.

Proponents of the bill say that changes are necessary to increase the likelihood of success of IVF. Current restrictions on IVF procedures, such a prohibition on embryo freezing, have led to low success rates.

A vote by division has been set for 23 May, after which the Bill will go to the committee stage. Health Minister Chris Fearne emphasised the government was open to continuing the discussion and putting in place certain changes.



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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May
12
 

Overcoming language barriers and linguistic prejudice in medicine

The journal Bioethics will shortly release a special issue focusing on the theme of “migration, health and ethics”. One of the papers in the issue addresses the underexplored topic of language barriers in clinical practice.

In her paper “Language barriers and epistemic injustice in healthcare settings”, McGill University linguist Yael Pelad explores how both barriers within languages and barriers between languages can impede everything from diagnosis and treatment to consultation and termination of treatment.

Pelad suggests that communicative factors such as a patient’s accent can introduce subtle bias into a clinician's mind, particularly if the accent is often associated with less educated populations. Alternatively, patients from linguistically diverse backgrounds may struggle to translate illness-related concepts from their native language into a lingua franca such as English. The English language concepts of “pain” and “ache”, Pelad observes, are indistinguishable in Russian, while “depression” is variously conceptualised in different cultures.   

Pelad advocates a series of steps to remedy what philosophers call “epistemic injustice”, or unfairness and bias that arises due to aspects of knowledge or communication.

Specifically, doctors should be sensitive to the limits introduced by culture and language, and be more willing to tolerate and work with the cultural ambiguities inherent in our conceptions of disease and illness.

Pelad writes:

“...Even when patients do not expect to be treated in their own language, there are nevertheless certain linguistic actions that can contribute to a more positive rapport and therefore better care delivery, such as a bilingual greeting, the recognition of one’s linguistic identity, the acknowledgement of language needs, and the effort of pronouncing a patient’s name correctly”.


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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May
06
 

104-year-old Australian scientist boards plane for Swiss suicide clinic

In a case which has attracted world-wide attention, a 104-year-old Australian scientist has boarded a plane which will take him to Switzerland to die at an assisted suicide clinic. Dr David Goodall, a distinguished ecologist who retired in 1979, is frail but not terminally ill. Hence, he is not eligible to move to the Australian state of Victoria to die there under its new euthanasia legislation.

A long-time member of Philip Nitschke’s Exit International organisation, Dr Goodall was able to find support for his request for assisted suicide overseas. A GoFundMe campaign organised by Dr Nitschke raised enough money to finance a business class flight to Basel. He will die there with the help of Dr Erica Preisig, the  head of lifecircle, a splinter group from the better-known organisation Dignitas.

A successful academic who retired in 1979 from teaching, Dr Goodall edited a 30-volume series of Ecosystems of the World after his retirement. An attempt by Edith Cowan University to take away his office at the age of 102 because he was unfit to be on campus failed after an international uproar.  

“I greatly regret having reached that age,” he said upon reaching his 104th birthday. “I’m not happy. I want to die. It’s not sad particularly. What is sad is if one is prevented. My feeling is that an old person like myself should have full citizenship rights including the right of assisted suicide.”

Although Dr Goodall is healthy enough, considering his age, he did not seem well supported in day-to-day life. Although the extensive media coverage about his decision focused on airport hugs from his grandsons, none of his family accompanied him on his trip to Switzerland. Instead, his travelling companion was the West Australian coordinator of Exit.

The turning point for him seemed to be a fall in his one-bedroom flat. Although he did not break any bones, he was unable to get up from the floor and remained there for two days. 



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May
06
 

Warnock reminisces about her famous report on embryo experimentation

Baroness Mary Warnock, a distinguished Oxford ethicist, was the chair of the Committee of Inquiry into Human Fertilisation and Embryology of the UK Parliament in 1982-1984 – which produced the Warnock Report. Its recommendations eventually became the Human Fertilisation and Embryology Act 1990, which governs human fertility treatment and experimentation using human embryos in the UK.

At 94, she is still going strong. BioNews, of the Progress Educational Trust in London, interviewed her about the impact of the Warnock Report. Here are a few brief excerpts:

The selling point of her controversial recommendations:

I think the most important thing really, and the only reason it managed to get through Parliament, was that we had the 14-day cut-off rule. If we hadn't had a definite number of days beyond which it would be a criminal offence to keep an embryo alive in the lab – that was immensely important [in getting through] ...

I'm perfectly sure that if we had tried to describe a stage of development of the embryo which would be the cut-off that would not have worked. Everybody can count up to 14, and everybody can keep a record. It was the simplicity of that rule that made it successful.

The trickiest ethical issue:

It was difficult in the sense that we were dealing with something completely new. There had never been an embryo alive outside the uterus in the lab before. There were absolutely no precedents.

The research had to go on but the process was very precarious at the beginning, finding a way to keep the embryo alive [in the lab]. If an embryo was used to carry out this research it would have been quite immoral to use the embryo to implant in a uterus – you wouldn't know if it had been damaged. This was an ethical issue that divided the committee itself, and the public.

[Then] we were recommending that embryos should be created and deliberately used for research and then destroyed – this is what people described as murder.

Does IVF need to be regulated now that it is so well established?

The first recommendation in our report was to set up the HFEA to inspect and monitor infertility treatment. I believe that is very important because it has more or less ruled out rogue practitioners. People who are infertile and want to start a family are very desperate and therefore very vulnerable. I wouldn't want that [protection] changed for anything. People say it's over-regulated – I think that's a fault on the right side.

On the disability lobby:

The one thing I do deplore is the attitude of what I think of as the disability lobby who think it's wrong to try and eliminate hereditary diseases because it is suggesting that they are unworthy of life. That is an absolutely terrible argument. The disability lobby is very vocal on this subject and it does form a real obstacle on progress.



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May
06
 

Child removed from Britain’s oldest IVF parents

Britain’s oldest IVF parents have had their child removed by a government agency after they failed to meet minimum care requirements. The unnamed couple, the mother aged 63 and her partner 65, are “devastated”, according to a report in the London daily The Sun.

“Social services have been dealing with them since last year and told them to make improvements in how the child was being looked after,” The Sun was told. “They then decided that the called-for improvements had not happened and took the child into care.”

The couple live in the north of England. Last year they engaged a surrogate mother in her 30s who was impregnated with the male partner’s sperm and a donor egg. The procedure was carried out overseas, as British clinics were reluctant to help a couple at such an advanced age. Legally speaking, the matter was complicated. The surrogate mother and her partner were named on the birth certificate as the parents, but the baby was then adopted by the commissioning couple.

The elderly couple are still fighting to regain custody of the child.



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May
06
 

German man forced to support IVF son created without his consent

Five years ago, a German couple, Karl and Inge, signed an agreement granting permission to an IVF clinic to create embryos with their frozen sperm and eggs. Then came divorce. Then Inge forged Karl’s signature twice to create embryos which resulted in the birth of a son. Then Karl was billed for child support.

Karl, unwilling to support children he had never consented to create, filed a lawsuit to be released from the obligation. He contended that after the separation he had revoked his permission for creating the embryos and that the clinic should assume financial support for the child. Inge, now 42, has subsequently been convicted of forgery.

But a regional court in Munich has ruled against Karl after finding that he had not been clear enough when he phoned the clinic to revoke his consent for the fertilized eggs to be used. At the time, he was told to discuss the matter with his ex-wife. When the clinic personnel had not heard back from him, they assumed his consent. The clinic, the court added, had no reason to doubt the authenticity of the forged signatures.



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May
05
 

Should driverless cars be utilitarian or egalitarian?

Debate over self-driving cars has intensified in the US following the two driverless vehicle fatalities in March. Some commentators argue that all driverless car tests should be halted until safety concerns are addressed.

Yet there is another question that requires urgent consideration, namely, “what kind of ethics should we program into driverless cars?”. Self-driving cars may face decisions involving a choice between which lives to prioritise in the event of an impending crash. And these decisions require ethical answers.

A new paper in the journal Frontiers in Behavioral Neuroscience analyses the views of human beings on how driverless cars should manage these situations. Researchers from Osnabruck University in Germany analysed the responses of 189 participants to a series of difficult ethical scenarios, including a scenario in which participants must choose between careering into a crowd and running over a single pedestrian, and another scenario in which participants must choose between sacrificing their own lives or taking the lives of a group of pedestrians.

The researchers found that respondents overwhelmingly sought to minimise loss of life, and where generally willing to sacrifice their own lives. Respondents also tended to favour younger persons over older persons.

The researchers described the respondent’s intuitions as “utilitarian”, and noted a conflict between this and the egalitarian philosophy underpinning current government regulations on driverless technology.

Throughout the experiment the subjects' decision making is more in line with utilitarianism, i.e., utilitarianism is more sensitive to the factors which subjects seem to recognize as morally relevant...The factors identified here, however, clash not only with moral theories, but also with political norms as laid out by the German ethics commission for autonomous driving.

The authors recommend that policy makers establish an open dialogue with broader society about the moral norms for self-driving cars. Policy makers should attempt to explain their egalitarian policies, cognisant that if the public rejects them they may need to be revised.



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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May
05
 

Are organ donors really dead?

What does it mean for a human being to “die”? This question is more complex than one might think. In the domain of vital organ procurement, there is significant disagreement about the criteria that we should employ to assess when someone has died.

The standard criterion for several decades has been the “brain death” criterion, according to which a patient can be pronounced dead once “whole brain death” has occurred. Whole brain death refers to the comprehensive and irreversible cessation of brain function, typically caused by trauma, anoxia or tumor.

Yet transplant surgeons have in recent years employed a different, more ethically contentious definition of death, the so-called “circulatory criterion for death”. “Circulatory death” refers to the permanent cessation of cardiopulmonary function, after which point brain tissue quickly begins to deteriorate (if it hasn’t already).

According to proponents of the circulatory criterion, a patient’s heart will never spontaneously restart after 2 or so minutes of pulselessness. As such, it is seen as ethically permissible to begin organ procurement once this short time period has elapsed. There are in practice different time periods specified by healthcare regulators for when organ procurement can begin (typically between 75 seconds and 5 minutes).

Yet several scholars have criticised the cardiopulmonary definition of death, arguing that the impossibility of autoresuscitation does not necessarily indicate that death has occurred. Critics point out that CPR could still restart a person’s heart even when autoresuscitation has become an impossibility.

The most recent criticism came from Kennedy Institute for Ethics bioethicist Robert Veatch, who wrote an extended blog post on the topic this week. Veatch states:

If one opts for requiring physiological irreversibility, death should be pronounced whenever it is physiologically impossible to restore brain function. Autoresuscitation is completely irrelevant. If autoresuscitation can be ruled out before physiological irreversibility, one must still wait until that point is reached. On the other hand, if it becomes physiologically impossible to restore function before autoresuscitation can be ruled out, death can be pronounced at the earlier point. Either way autoresuscitation is irrelevant.


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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May
05
 

Scientists build synthetic embryos

Scientists from the universities in the Netherlands have successfully created synthetic embryo-like structures from mouse stem cells, raising hopes of new insights into the causes of infertility. The model embryos resemble natural ones to the extent that, for the first time, they implant into the uterus and initiate pregnancy. The research, published this week in Nature, was met with enthusiasm by the scientific community, though some are wary of the idea of creating artificial embryos.

Here’s an excerpt from a Maastricht University press release explaining the new research:

“The early embryo is a hollow sphere formed by less than a hundred cells. It comprises an outer layer of cells, the future placenta, and a small cluster of inner cells, the future embryo. Stem cell lines representing these inner and outer parts were first cultured independently and largely multiplied in the laboratory. Using engineering technologies researchers then assembled them in a recreated environment that triggered their conversation and self-organisation. While observing the process [principal investigator] Dr. Nicolas Rivron noticed that ‘it is the embryonic cells that instruct the placental cells how to organise and to implant in utero. By understanding this molecular conversation, we open new perspectives to solve problems of infertility, contraception, or the adult diseases that are initiated by small flaws in the embryo’...”

MacGill University bioethicist Jonathan Kimmelman said that regulators need to think seriously about the limits that are placed embryo research, in light of these developments: 

“We actually have to think substantively about...how we draw really clear and distinct lines so that we can unlock the scientific potential of this research, while also respecting moral limits on what we should do.”


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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April
28
 

British toddler Alfie Evans dies in hospital

Terminally ill British toddler Alfie Evans has died just a little under one week after having life support withdrawn. The boy's father, Thomas Evans, annouced his passing on Facebook yesterday. "My gladiator lay down his shield and gained his wings at 02:30", he wrote. "Absolutely heartbroken". 

The protracted legal dispute over the boy's fate reached its climax on Monday, with protesters attempting to storm Alder Hey Children’s Hospital in a bid to have the boy released. Footage showed dozens of angry protesters running towards a revolving door at the entrance of the hospital, with police forming a line to block them. The 200-strong crowd proceeded to form a human roadblock on the main road to the hospital, linking arms and chanting “save Alfie”.

Pope Francis expressed his sympathy for the boy's family in a tweet, writing: "I am deeply moved by the death of little Alfie. Today I pray especially for his parents, as God the Father receives him in his tender embrace".

The Italian government had gone as far as to grant the boy citizenship in the hope that his transfer to an Italian hospital would be approved.

Evans was suffering from an unidentified neurodegenerative disease, and was said by doctors to be in a “semi-vegetative state”. Specialists from Alder Hey Hospital said that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. The British Court of Appeal UK has told staff to move the child to palliative care and withdraw life support.

By the end of the week, the boy’s parents appeared to have accepted the court’s decision to discontinue treatment. On Friday, Alfie’s father Tom Evans thanked supporters for their solidarity, but told them “to go home”:

"We are very grateful and we appreciate all the support we have received from around the world, including from our Italian and Polish supporters, who have dedicated their time and support to our incredible fight...We would now ask you to return back to your everyday lives and allow myself, Kate and Alder Hey to form a relationship, build a bridge and walk across it."

British ethicist Iain Brassington criticised the responses of protesters and the Italian government, labelling them “horrible, irrational, indefensible, and – for want of a better word – nuts”. Readers of the blog responded spiritedly to Brassington’s rebuke (see the comments to his article).

Vox News journalist Tara Isabella Burton summarised the debate as a disagreement about whether parents or the state should decide what is in the best interests of a child:

Ultimately, however, the Evans case is about who gets to decide what the best interest of a child really is. When the view of the state and the view of a child’s parents are at odds, who gets to have the final say? The answer ties into wider questions — about medical ethics and what it means for a life to be “not worth living,” and about popular trust, or lack thereof, in the UK’s National Health Service, a paradigmatic example of both the pros and cons of socialized medicine.


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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April
28
 

Wow! How many people are Flemish doctors REALLY euthanasing?

Only about 15% of euthanasia cases in the semi-autonomous region of Flanders, in Belgium, are being reported, according to the latest research by physicians. It has long been known that euthanasia is underreported on official forms, but this figure – that there are about 550% more cases of euthanasia than are currently making their way into the government statistics -- seems to have astonished even the researchers.

In a letter to the European Journal of Epidemiology, researchers from the End-of-Life Care Research Group at the Free University of Brussels admit that “death certificates substantially underestimate the frequency of euthanasia as a cause of death in Belgium and are therefore an unreliable tool for monitoring its practice.” According to a large sample of death certificates, 0.7% of all deaths were described as euthanasia, but the anonymous survey of doctors yielded a figure of 4.6% of all deaths.

To bring the official statistics into line with reality, the researchers recommend that death certificates be revised to make it easier for physicians to list the real cause of death and that they be educated on how to fill out the forms.

So why don’t doctors report that they have helped a patient die through euthanasia (or assisted suicide, which was treated as euthanasia in the survey)? The researchers list several reasons:

... physicians consciously or unintentionally not recognizing their cases of euthanasia as such, because they believe that they have not complied with the legal due care criteria (e.g. not reported euthanasia to the evaluation committee as is required by law), because they have privacy concerns for themselves—as reporting attaches their name to the euthanasia case—and the patient, and because they do not consider it necessary to report it on the death certificate. The lack of clear guidelines is probably also a reason for the low number of euthanasia cases indicated on death certificates.

This research has far-reaching implications for other jurisdictions where euthanasia is legal. “It may be that estimating the number of euthanasia-related deaths will be impossible altogether in some jurisdictions with legal euthanasia,” the authors acknowledge. They single out the Australian state of Victoria, where doctors are not required to list assisted suicide or euthanasia as the cause of death, for fear of patients being denied their life-insurance pay-outs. In Oregon, and other American states which copied their legislation, doctors list the underlying condition as the cause of death, not assisted suicide.

So, instead of official statistics, authorities will be forced to rely upon anonymous surveys like the one from the End-of-Life Care Research Group to uncover the truth of how many people are choosing euthanasia – or even having it chosen for them.

The statistics relate to deaths in Flanders between January and June 2013, so the trend in reporting may have changed since then.



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April
28
 

World’s first total penis and scrotum transplant raises ethical questions

A reconstructive surgery team at Johns Hopkins University has successfully performed the world’s first total penis and scrotum transplant. The patient was a young unnamed military veteran maimed by an IED in Afghanistan. He lost both legs above the knee as well as his genitals.

“That injury, I felt like it banished me from a relationship,” he told the New York Times. “Like, that’s it, you’re done, you’re by yourself for the rest of your life. I struggled with even viewing myself as a man for a long time.”

“We are hopeful that this transplant will help restore near-normal urinary and sexual functions for this young man,” says W.P. Andrew Lee, the leader of the surgical team.

A team of nine plastic surgeons and two urological surgeons was involved in the 14-hour surgery on March 26. They transplanted from a deceased donor the entire penis, scrotum (without testicles) and partial abdominal wall.

While it’s possible to reconstruct a penis using tissue from other parts of the body, says Lee, a prosthesis implant would be necessary to achieve an erection, and that comes with a much higher rate of infection. Additionally, due to other injuries, servicemen often don’t have enough viable tissue from other parts of their bodies to work with.

This type of transplant, where a body part or tissue is transferred from one individual to another, is called vascularized composite allotransplantation. The surgery involves transplanting skin, muscles and tendons, nerves, bone and blood vessels. As with any transplant surgery, tissue rejection is a concern. The patient is put on a regimen of immunosuppressive drugs to prevent rejection. Lee’s team has developed an immune modulation protocol aimed at minimizing the number of these drugs needed to prevent rejection. Attaining complete function, including urinary and sexual functioning, could take between six to 12 months.

Apart from the normal ethical issues associated with transplant surgery, this one raised the question of whether testicles should also be transplanted. Very early in their planning the surgeons decided that the answer was No.

“If you were to transplant testicles, that would effectively be making the donor not only a donor of body parts, but also a donor of sperm,” Jeffrey Kahn, director of the Johns Hopkins Berman Institute of Bioethics, told The Verge. “It’s effectively a sperm donation without consent — and that shouldn’t happen.”

And, of course, reports in the media sparked interest in using transplant surgery to enable transgender switches. “Although the procedure is still classified by doctors as experimental, hopes are high for what the procedure could offer trans men in the future,” commented Pink News, a gay website in the UK. According to a New York Magazine blog, Johns Hopkins is “currently” not considering implementing the US$300-400,000 procedure for transgender individuals.



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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April
28
 

The ethical complexities of ageing

The “ethics of ageing” has become a pressing concern in recent years, with many nations around the world experiencing the profound effects of an “ageing population”. Debates over assisted suicide and euthanasia have also led many scholars to explore the meaning and significance of frailty and vulnerability at the end of life.

It is not surprising, then, that two major medical ethics journals have recently published themed issues on the ethical complexities of ageing.

The May edition of the journal Bioethics addresses a range of topics related to ageing, including the meaning of dignity in the context of old age; the ethics of dementia; the nature of vulnerability as experienced by older persons; and the meaning of a “successful” or “flourishing” end to one’s life. Philosopher John-Stewart Gordon, the editor of the special issue, writes that ageing raises a series of “important” and “perennial” issues that are in need of further discussion: “The last phase in human life is as important and valuable as any other period of human existence”.

Two of the papers in the issue offer a phenomenological critique of the concepts of dignity and ageing, with the authors arguing for a more precise definition of the terms that maps on to the lived-experiences of older persons.

Other papers in the edition discuss issues related to the autonomy and welfare of dementia patients.

A special edition of the journal Perspectives in Biology and Medicine addresses the topic of ageing from the perspective of a fourfold taxonomy, namely, ageing “as a time of robust health, of dementia, of frailty, or of advanced illness that ends in death”.

Historian and theologian David Barnard opens the edition with a poignant reflection on ageing as a “mystery”. Barnard argues that the influence of Western individualism and the “technologisation” of human experience has led us to treat ageing and death as a “technical problem” to be “fixed”. Yet according to Barnard, the proper response to frailty is not to seek to obliterate it by conquering aging itself, but rather to accept some of the losses associated with aging as part of the human condition.



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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April
28
 

Managing miracle expectations in clinical medicine

Despite the increasingly atheistic nature of Western countries, many people still believe in miracles. In particular, statistics indicate that many people still believe in medical miracles. What’s more, the cases of terminally ill British infants Charlie Gard and Alfie Evans arguably are examples of parents “holding out for a miracle”.

How then, should hospital ethicists respond to miracle invocations by surrogate decision makers?

A new article in the American Journal of Bioethics attempts to provide guidelines for hospital ethicists in their interactions with religious (particularly, Christian) surrogate decision makers. Three American medical researchers -- Trevor M. Bibler (Baylor), Myrick C. Shinall Jr. (Vanderbilt) and Devan Stahl (Michigan State) -- offer “a taxonomy of miracle invocations”, ranging from more personal, authentic invocations of the divine to invocations motivated by a distrust and a loss of faith in the healthcare team treating a patient. They argue that, regardless of what the motivation of the miracle invocation is, clinical ethicists need to exercise show “empathy” and “epistemic humility” when engaging with decision makers:

The model of inquiry we promote paints the ethicist as an open-minded and active collaborator in another’s search for truth...Some ethicists may reject this portrait, but patients’ moral systems often include religious beliefs to which the ethicist must respond—or risk ignoring moral, spiritual, and existential distress...The ethicist’s ability to clarify seemingly opaque concepts, promote precise communication, and elucidate values seems especially important when religious concepts orient a patient’s worldview.

Several commentators respond to the target article, with some suggesting that it falls outside of the role of the ethicist to explore and “shore up” the moral worldview of surrogate decision makers. Some believe that it is the role of chaplains and pastoral care workers to interact with patients at this level.



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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April
28
 

What do you do when a medical hero is also a villain?

Former US Surgeon General Thomas Parran was best known for his work in championing a revolutionary public health campaign against syphilis in the United States in the 1930s and 40s. Some say that his initiative saved the lives of tens of millions of Americans -- and transformed the public’s view of syphilis from being a sign of moral weakness to a genuine public health problem.  

Yet recent research has tarnished the influential doctor’s reputation, and even led a US university to consider stripping his name from a major campus building.

Parran has been implicated in the infamous 1932-1972 Tuskegee Syphilis Experiment, a federally-funded medical trial that involved the deliberate withholding of syphilis treatment from hundreds of African-American males. A 2013 essay by two prominent US medical historians suggested that the idea for a syphilis experiment on African American males came from Parran’s writings. Historians Allen Hornblum and Gregory Dober quote several documents that indicate that Parran was contemplating the idea of a Tuskegee-style experiment. In a January 1932 memo, Parran wrote of Macon County, Alabama: “If one wished to study the natural history of syphilis in the Negro race uninfluenced by treatment, this county would be an ideal location for such a study.”

After his retirement from the office of Surgeon General, Parran worked with academics from the University of Pittsburgh to establish a school of public health -- indeed, he was the first dean of the school, and had the school building named after him. But now both students and staff at the university are demanding that the name be changed, labelling Parran’s legacy a “scandal” to new students.

“This isn’t who we are anymore,” Helen Ann Lawless, a second-year graduate student in the public health school, told STAT. “We are still attached to this legacy … we can’t have his name on our building because it venerates him”.

The University has established a committee to consider whether Parran’s name should be removed.



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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April
28
 

Trump Administration pushes back against reproductive rights as human rights

Ambassador Michael Kozak at release of US government's human rights report 

More pushback from the Trump Administration against “reproductive rights” can be seen in the latest Country Reports on Human Rights Practices. The 2017 edition omits a section called “reproductive rights” in which access to contraception and abortion, as well as maternal mortality rates, was sketched out for every country. In its place is a section called coercion in population control which discusses instances of “coerced abortion, involuntary sterilization, or other coercive population control methods”. This is not what supporters of abortion rights mean by “reproductive rights”, which ought to include access to contraception and abortion.

It was the Trump Administration’s first chance to alter the Obama’s Aminstration’s focus on reproductive rights as a fundamental human right. “Reproductive rights are human rights, and omitting the issue signals the Trump administration’s latest retreat from global leadership on human rights,” said a spokeswoman for Amnesty International USA.

The State Department had a different story. A senior official with the Bureau of Democracy, Human Rights and Labor, Michael Kozak, said a discussion of abortion was omitted because there was no international consensus on whether women must have access to the procedure, although there is a consensus on the wrong of forced abortions.

“Reproductive rights,” said Mr Kozak, is “one of the few terms that are used in the report that isn’t derived from an international treaty that has a definition or derived from U.S. law, where there’s a clear definition to the term.

We don’t report on it because it’s not a human right,” he said. “It’s an issue of great policy debate.”



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April
21
 

Old habits die hard

"Practice birth control for the revolution - freely supplied contraceptives". 1975 poster promoting the one-child policy

Writing in the magazine Foreign Policy, a Chinese scientist has a gloomy prediction for bioethicists: “China Will Always Be Bad at Bioethics”. Yangyang Cheng, a postdoctoral research associate at Cornell University, believes that the Chinese state is not fundamentally interested in fostering a culture of respect for human dignity. In this environment, observing bioethical norms runs second. He cites a number of issues.

The ethics review process is often a mere rubber stamp and exists more on paper than in reality. Rampant corruption allows dangerous and illegal practices to flourish. Massive social engineering projects ignore the welfare of individuals. The old one-child policy was the most egregious example – but the impulse has not disappeared. Nowadays the government is promoting the “right quality of women” and preventing “new births of inferior quality”.  

Privacy will be non-existent in a society with a strong AI system. “Biotechnology will become a powerful tool in the Chinese security state.” Most concerning of all,” writes Cheng, “is how the Chinese state’s understanding of science discounts the autonomy of an individual body for the collective notion of a strong national body.”

He concludes that China will only observe bioethical principles if it is forced to by the international community – “when its membership in the global political and scientific community depends on it — in other words, when it has no other choice.”



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April
21
 

Human brain organoids flourish in the heads of mice

Human brain tissue integrates and thrives in the brains of mice, according to a report in Nature Biotechnology. Using brain organoids created from human pluripotent stem cells, scientists transplanted them into mice. The organoids developed blood vessels within 5 days; by 90 days after implantation, axons had extended deep into the brains of the mice. The neurons were firing in synchronised patterns, suggesting that an active neural network had been established.

The integration of human brain cells into the brains of mice obviously raises delicate ethical questions about the creation of interspecies chimeras. However, the scientists tested the mice and found no difference in their intelligence.

“It brings up some pretty interesting questions about what allows us, ethically, to do research on mice in the first place — namely, that they’re not human,” Josephine Johnston, a bioethicist at The Hastings Center, commented last year. “If we give them human cerebral organoids, what does that do to their intelligence, their level of consciousness, even their species identity?”

If this line of research succeeds, the organoids could be very useful in studying brain diseases and could even be used to repair damage cause by traumatic brain injuries, strokes, and other neurological conditions.



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April
21
 

Court rejects Alfie Evans appeal

Britain’s Court of Appeal has ruled that 23-month-old British infant Alfie Evans should not be taken to Italy for experimental treatment. Evans is suffering from an unidentified neurodegenerative disease, and is said by doctors to be in a “semi-vegetative state”. His parents had petitioned the courts for permission to take him abroad for further medical treatment, and even approached Pope Francis for support.

Yet the courts rejected the request, saying that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. A date has been set by Alder Hey Children’s Hospital for taking Evans off life-support.

Media reports on Thursday indicated that Alfie’s parents have asked the Supreme Court to reconsider the issue.

Oxford-based neonatologist Dominic Wilkinson said that the UK judicial process for resolving end-of-life disputes was too protracted. He argued that a better system can be found in Texas, where disputes of the discontinuation of treatment are resolved by hospital ethics committees.



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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April
21
 

New preservation technologies: an ethical solution to the organ shortage?

Many Western nations face dire shortages of vital organs for transplant. Some doctors have proposed controversial changes to increase the number of organs available.

One such proposal – defended by American bioethicists Franklin Miller and Robert Truog – is that we abandon the dead donor rule for vital organ procurement. If transplant surgeons are able to harvest organs before death, then they will have an increased likelihood of procuring viable, non-damaged organs. Many organs are “lost” as a result of doctors having to wait too long before being allowed to procure them.

Yet perhaps we won’t need to opt for such an ethically contentious solution to the organ shortage. A research team led by biomedical engineers from the University of Oxford have discovered a way of preserving harvested livers that is far more effective than current cold-storage techniques. This new technique may eventually allow us to double the number of liver organ transplants available, some experts say.

Here’s an excerpt from a Nature article on their ground-breaking findings:

The metra device works by supplying the liver with oxygenated blood, anti-clotting drugs and assorted nutrients, all while keeping the organ at a steady 37°C. Because immune cells are removed from the device’s blood supply to avoid inflammation, “the liver is allowed to recover in a very benign environment”, says Peter Friend, a transplant surgeon at the University of Oxford, UK, and co-founder of the device’s manufacturer, OrganOx.

  The trial involved 220 patients across Western Europe whose livers had failed because of hepatitis, cirrhosis, cancer or other causes. Each participant was randomly allocated a donor liver that was either hooked up to the metra machine, or stored on ice — which slows down cellular metabolism to mitigate damage, but makes the organ prone to injury when blood supply returns to the tissue.

  Recipients of livers kept on the device showed a 50% average decrease in levels of an enzyme associated with organ damage, compared with recipients of livers preserved on ice. The rate of early allograft dysfunction — a serious and potentially deadly complication of transplantation — occurred in only 10% of machine-stored liver recipients, versus 30% of those allocated ice-stored ones. (The one-year trial was too short and small to detect any difference in long-term patient survival.)



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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April
21
 

‘Asperger syndrome’ now has a different meaning

Experience shows that the practice of naming diseases and syndromes after physicians may carry an ethical burden. In recent years a number of eminent Germans have been uncovered as Nazis or Nazi sympathisers. Reiter's syndrome, for example, is named after Hans Reiter (1881- 1969) who was tried at Nuremberg and found guilty of conducting typhoid experiments that killed hundreds of prisoners in concentration camps. Friedrich Wegener (1907-1990), whose name persists in Wegener's granulomatosis, was involved in selecting Jews from the Lodz ghetto for extermination at Auschwitz.

And now the finger has pointed at Hans Asperger, the Austrian paediatrician who first described a form of autism. For many years, Asperger was regarded as a doctor who defended “misfits” from the Nazis at great personal risk.

However, an historical essay in the journal BMC Molecular Autism accuses Asperger of collaborating with Nazi doctors in some of their worst excesses. Asperger never joined the Nazi party and as an active Catholic his loyalty to the regime was initially suspect. However, after the 1938 Anschluss, he gradually became more involved in some of the Nazi programs and was eventually viewed as “politically irreproachable”. He appears to have helped select victims for a child-euthanasia program as a member of a commission which screened youngsters with mental disabilities. He embraced Hitler’s ideas on race hygiene and eugenics. One of his speeches given shortly after the Anschluss, for example, is a clear endorsement of Nazi ideology: 

The central idea of the new Reich—that the whole is more than its parts, and that the Volk is more important than the individual—had to bring about fundamental changes in our whole attitude, since this regards the nation’s most precious asset, its health.

There is no smoking gun in the evidence marshalled against Asperger to convict him of crimes like the atrocities of Auschwitz, but he was comfortable with Nazi policies. The essay is a portrait of a talented doctor, like many of his contemporaries, who “managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities.” Perhaps this gives a radically new meaning to "Asperger syndrome". 

Should the condition be renamed? Some say Yes. “We should stop saying ‘Asperger’,” says historian Edith Sheffer. “It’s one way to honour the children killed in his name as well as those still labeled with it.”



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April
21
 

Paying your respects to the digital dead

Every year, 1.7 million Facebook users pass away, leaving behind their personal profiles. Social media platforms have been quick to capitalise on this opportunity, and several apps and websites have developed that allow you to engage with the profiles of the dead.

Yet Oxford ethicists Luciano Floridi and Carl Öhman argue that we may be acting unethically if we exploit the data of deceased. This material is more than mere property of the deceased person – it is “constitutive of one’s personhood”.

In a paper in Nature: Human Behaviour entitled “An ethical framework for the digital afterlife industry”, Floridi and Öhman  argue that digital remains of the deceased must be treated with “dignity” – they “may not be used solely as a means to an end, such as profit, but regarded instead as an entity holding an inherent value”.

Floridi and Öhman look to regulations already in place for the use of human remains in Museums. They suggest that analogous regulations could be developed to monitor the digital afterlife industry.

“A good model is provided by archaeological and medical museums, which exhibit objects that, much like digital remains, are difficult to allocate to a specific owner and are displayed for the living to consume...A document of particular interest is the International Council of Museums (ICOM) Code of Professional Ethics...As museums often sell and produce replicas of exhibited objects (human or not), the code [...] specifies that ‘all aspects of the commercial venture’ must be carried out with respect for ‘the intrinsic value of the original object’.”

Floridi and Öhman outline a series of draft regulations to which “digital afterlife firms” should conform:

(1) consumers are informed on how their data may come to be displayed postmortem; (2) users are not depicted radically differently from the bot that they originally signed up for; and (3) users only upload data that belongs to them personally, that is, not making bots out of a deceased relative or friend.


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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April
21
 

Emotional support animals: a waste of time?

It is not uncommon to come across an emotional support animal (ESA) in the US – particularly on a plane. Aviation regulations allow animals to board a flight as long as a doctor has signed a letter stating it helps its owner deal with a medical condition. Delta Air Lines carried 250,000 such animals in 2017 – up 150% on 2015.

Yet experts are sceptical of the health benefits. ESAs – including dogs, pigs, hamsters and ducks – are used to treat conditions ranging from anxiety and depress to PTSD and even addiction. Yet very little empirical evidence exists to validate these therapies.

In a recent interview with New Scientist, anthro-zoologist John Bradshaw was scathing in his criticism of public health programs involving ESAs.

“When you stroke a pet, your oxytocin and endorphin levels go up, your blood pressure comes down and your heartbeat gets more regular...But there’s no evidence that this translates into anything that lasts even a couple of hours, let alone a lifetime.”

Bradshaw argues that animals may be used effectively to help autistic children learn how to read. Yet programs such as using dolphins to help mature adults overcome depression have no evidential support.

“There’s a huge amount of mumbo jumbo surrounding it... It might be fun, but there are no independent studies that have shown any beneficial effect whatsoever.”


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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April
14
 

How do the Dutch respond to euthanasia requests from the intellectually disabled?

How do intellectually disabled people fare in a country where euthanasia and assisted suicide are legal? Writing in BMC Medical Ethics, Baroness Ilora Finlay and three colleagues conclude that Dutch criteria for euthanasia “are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.”

Their findings are based on an analysis of six case studies of people who were euthanased between 2012 and 2016 with intellectual disability and three with autism spectrum disorder. The case studies are publicly available. They write:

“Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS.”

Despite the fact that assessing the capacity of intellectually disabled people is very difficult and a task for specialists, the authors found that only in one of the nine cases was a specialist consulted. This suggests that their requests for euthanasia are poorly understood:

The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. We found no evidence of safeguards against the influence of the physicians’ own subjective value judgements when considering EAS decision, nor of processes designed to guard against transference of the physicians’ own values and prejudices.

In a concluding reflection, the authors observe that the intellectually disabled may be the “canary in the coalmine” in a society where euthanasia and assisted suicide are legal. “It may well be that the ability to use rationality and logic when weighing up the EAS option, and thus decision-making capacity in accordance with standard capacity tests, is impaired in most people affected by the emotional turmoil of terminal illness or suffering caused by chronic conditions.”



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April
14
 

Assisted suicide has slow take-up in DC

A year after assisted suicide was legalised in the District of Columbia, no one has taken advantage of it. Only two doctors in the US capital have indicated that they are willing to accept patients who want to receive lethal medications and only one hospital has allowed its doctors to participate.

“It’s been exceptionally, exceptionally slow,” Kat West, national director of policy and programs for Compassion and Choices, told the Washington Post. “Especially in the first year, there’s usually a lot of interest in learning a lot about these laws. That, we think, has been really dampened and discouraged in D.C. because of these administrative rules.”

Doctors are particularly reluctant to place their names on a government register, even if it is confidential. “They don’t want to be known as the doctor who gives out death prescriptions,” said Omega Silva, a retired doctor and a Compassion and Choices volunteer. According to the Post, no doctors testified in favour of the legislation when it was being debated, and several spoke against it. “Even those who say go ahead and pass the law — they don’t want to participate in it,” G. Kevin Donovan, the director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center, an opponent of the law, told the Post. “They want other people to do it for other patients. It’s very difficult for a physician to directly send their patients to death because everything in their training is to try and do what’s good for their patients.”



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April
14
 

Wanted: ideologically sound Chinese sperm. Willing to pay top renminbi

Eugenics – “good stock” -- comes in all shapes and sizes. In China, the latest definition of what is “good” in a sperm donor may be that he “have good ideological thoughts, love the socialist motherland and support the leadership of the Chinese Communist Party.”

The sperm bank at Peking University Third Hospital recently placed an advertisement for donors listing these requirements along with freedom from genetic defects like baldness and colour blindness. Successful applicants – only about 19% -- could earn 5,000 renminbi, about US$800, according to an article in the New York Times.

William A. Callahan, a professor of international relations at the London School of Economics, told the Times that the advertisement reflected the efforts of China’s President Xi Jinping to blend science with ideology.

“Nationalism and socialism are mixing in peculiar ways to promote Chinese identity as a bloodline race,” he said. “The sperm bank announcement shows how the party increasingly dominates Chinese politics, and how nationalism increasingly is defined according to racial purity.”

The ad was mocked on social media and was eventually taken down.



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April
14
 

In post-one-child-policy China posthumous conception is a matter of desperation

An underground market in surrogacy is booming in China after the Communist Party reversed the decades-old one-child policy. Nothing illustrates this better than a bizarre legal battle fought by two sets of grandparents over frozen embryos.

In 2013 a young couple who had just had IVF treatment were killed in a car accident. After the curse of infertility, the accident appeared to end the bloodline of two families.

The heartbroken grandparents decided to engage a surrogate mother to carry the embryos, but the IVF clinic refused to release them, as China has banned surrogacy. Rather than risking the consequences of a lawsuit with the hospital, the two couples sued each other in order to get the courts to back their case. An acquiescent court handed down a favourable decision:

“The only carrier of the two families’ blood lines carries the burden of their grieving memories and consolation.”

A surrogate mother in Laos was impregnated with the embryos. She gave birth to the child – a boy named Tiantian, or Sweet Sweet --  last December in Guangzhou.

China is not the only country where posthumous conception is an issue. In Israel an informal legal instrument has been created, the “biological will” to cater for the spouses and grandparents of men who died before they were able to have children. The document asserts that “a person who has their semen or eggs frozen would like them to be posthumously used to create offspring”.

This solution, the brainchild of lawyer Irit Rosenblum, is controversial. But as the mother of a young deceased soldier told Der Spiegel, "We worship all these idiots, like Napoleon, people who brought death to so many, instead of praising those who have given life. About 7 million babies worldwide have been born through IVF. Why don't we worship the inventor of IVF?"



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April
14
 

The contradictions of commercial surrogacy

Commercial surrogacy contains inherent contradictions about the status of the mother, according to an article in the Journal of Medical Ethics. Jennifer Parks and Timothy Murphy, two American bioethicists, focus on times when the person or persons who commissioned the pregnancy abandon the child. This has happened in a number of widely-publicised cases overseas and in the US. Most of the time, the mother is left with responsibility for the baby, even if it is disabled.

They argue that “Treating commercial surrogates as presumptively responsible for children abandoned by commissioning parents, ... rest[s] on highly gendered assumptions about women and altruism.” Furthermore, “current commercial surrogacy practices face an internal conflict: dematernalising commercial surrogates while sometimes holding in reserve that maternal status as a safety net for unwanted children.” 

There are no tidy solutions, they acknowledge. However, they suggest that preimplantation genetic diagnosis should be included in the contract and that the commissioning parent or parents discuss the possibility of birth defects with the mother. Another strategy would be to assess commissioning parents to see if they would make good parents. “While these strategies may not altogether prevent the abandonment of children born via commercial surrogacy,” they conclude, “they would at least make abandonment less likely, which would work not only to protect the resulting children’s welfare but also that of the surrogates who might otherwise face expectations of care for surrogacy orphans.” 



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April
14
 

CRISPR on the rampage

CRISPR gene editing is one of the most exciting technologies of recent years, although most of the excitement so far involves curing people of obscure diseases and improving crops. Now a Dwayne Johnson film showcases its full potential – trashing all of downtown Chicago, for starters.

This is a must-see for fans of B-grade science fiction. The critics score at Rotten Tomatoes is 50%, but 78% of the audience loved it.



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April
14
 

Are sperm counts declining around the world?

Several studies have reported a significant decline in sperm concentration and total sperm count among men from Western countries. Moreover, given recent findings that reduced sperm count is related to increased morbidity and mortality, the ongoing decline points to serious risks to male fertility and health. A recently-released video from The Economist outlines the problem.

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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April
14
 

Macron encourages French bishops to speak out on bioethics

In a speech on Monday that garnered both criticism and praise, French President Emmanuel Macron told a gathering of Catholic bishops that they should not be afraid to contribute to public debate, saying that Christians bring a valuable perspective on the human person to otherwise secular political discussions.

Speaking under an arch of the famous College of the Bernadins in Paris, Macron said that “the relationship between Church and State [in France] has deteriorated”, and that he wished to “repair it”. He said that the French doctrine of laïcité did not have the function of “denying the spiritual”, and that it was important that people of faith remind society of the transcendent:

“Our contemporaries need, whether they believe or do not believe, to hear from another perspective on man than the material perspective...They need to quench another thirst, which is a thirst for absolute. It is not a question here of conversion, but of a voice which, with others, still dares to speak of man as a living spirit”.

Macron praised the Church for its consistent defence of the vulnerable in society, ranging from the unborn and the elderly to migrants and the poor.

“You consider that our duty is to protect life, especially when this life is defenseless. Between the life of the unborn child, that of being on the threshold of death, or that of the refugee who has lost everything, you see this common trait of deprivation, nakedness and absolute vulnerability”.

The speech appears to be an invitation for the Church to express its opposition to impending bioethics legislation due to be introduced in French parliament by the end of the year. The legislation will seek to make single women and lesbian couples eligible for assisted reproduction, which currently only is available to infertile heterosexual couples in France. It would also reconsider legalizing euthanasia, which is now banned.

Macron’s speech was slammed by influential members of the French intelligentsia, with some describing it as an attack on the of between Church and State.



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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April
14
 

Tongue splitting, bodily harm, and human dignity

Contemporary cosmetic surgery has become a tool for realising bizarre personal fantasies. Sometimes it also leads to significant bodily harm. “Tongue-splitting” is an operation whereby a person’s tongue is split from the tip to as far back as the underside base. The operation has become a common alteration for body-modification enthusiasts, who say it heightens their sense of taste and touch.  

Some jurisdictions, however, have enacted a ban on the procedure. The operation can be painful, and can temporarily impede one’s capacity for speech.

In a recent post on the blog Practical Ethics, UK lawyer Charles Foster considers the legality and ethics of the procedure.

Foster discusses the case of R v BM, where a Wolverhampton tattooist was found guilty of inflicting grievous bodily harm on a patient after splitting their tongue. Even though the customer consented, the court found that consent was not a defence against having inflicted grievous bodily harm.

Foster argues that the ruling represents a defence of basic human dignity, which transcends the ambit of personal autonomy:

[The ruling] is a salutary reminder that there are limits to the law’s protection of personal autonomy. Factors other than autonomy are in play in the criminal law. I have argued elsewhere that the primary factor (and the foundational factor in the criminal law – in which all other factors, including autonomy, are rooted) is human dignity.

Indeed, Foster argues that in harming another, one does violence to one’s own human dignity:

One might say that X causing injury to Y is doubly culpable because in doing so X outrages not only Y’s dignity but also his own (X’s) dignity...dignity is ‘Janus-faced’.


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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April
14
 

Are crisis pregnancy centres unethical?

A recent article in the American Medical Association Journal of Ethics has sparked debate about the practices of crisis pregnancy centres (CPCs) in the US.

The article, "Why Crisis Pregnancy Centers Are Legal but Unethical", claims that CPCs deliberately withhold information about abortion services from pregnant women, and provide misleading information about the risks of premarital sex, contraception and pregnancy termination. The authors, Amy Bryant and Jonas Swartz, say that CPCs masquerade as medical facilities while not being staffed by medical professionals. They argue that the centers should be required to conform to “the ethical standards of licensed medical facilities”.

The article comes in the wake of a Supreme Court challenge to a California law requiring CPCs to display information about State birth control and abortion services.  

Bioethicist Christian Brugger published a scathing critique of the paper, arguing that it was tendentious and based on poor ethical reasoning:

Since [...] abortion is not a medical, therapeutic or morally-valid service to offer anyone, for any reason, failing to provide information about it, or to refer for it, or to conform to abortion-friendly standards; or trying to persuade women away from it in respectful ways; or setting up near abortion clinics to offer life-saving alternatives; or teaching lifestyle habits that help women not to find themselves carrying problem pregnancies, are not only not morally wrong, they are required of any decent citizenry in a free society.


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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April
08
 

Hawaii legalises assisted suicide

Hawaii has become the seventh American jurisdiction where assisted-suicide is legal. The “Our Care, Our Choice Act” passed  the Hawaii House of Representatives on a 39-12 vote on March 6, and cleared the Senate on a vote of 23-2 this week. Governor David Inge signed the bill on Thursday. “It is time for terminally ill, mentally competent Hawaii residents who are suffering to make their own end-of-life choices with dignity, grace and peace,” he said.

Under the provisions of the new law, the terminally ill may get a prescription for a lethal drug so long as two doctors agree that the patient has no more than six months to live and is mentally competent. He would also need to undergo a mental health evaluation; two separate requests should be made to an attending provider (who could be a nurse, not a doctor); and two witnesses must attest to the patient’s wish to die. Although a doctor could dispense the medication, patients would be required to take it on their own. The patient’s family need not be informed of his decision.

Since 1997, the legislatures of Hawaii, Oregon, Washington state, California, Colorado, Vermont and the District of Columbia have passed laws permitting assisted suicide. In Montana, a court decision found that it was legal, but there has been no legislation.

In the same time ten states have passed laws explicitly banning assisted suicide. The latest was Utah, where the criminal code was clarified to include assisted suicide. It was prompted by a gruesome case in which 18-year-old Tyerell Przybycien helped 16-year-old Jchandra Brown to hang herself and filmed her last moments.



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April
08
 

10% of Flemish cancer patients choose euthanasia

A survey of end-of-life decisions for cancer patients involving Flemish physicians has found that in 10.4% of the cases, there was euthanasia or physician-assisted suicide and life shortening without explicit patient request in 1.8%.

The results were published in the British Journal of Cancer and were based on a survey of physicians in Flanders, Belgium, in 2013. The percentages are based, not on cancer deaths, but on the number of end-of-life decisions for the patients. The classification system may seem a bit odd to non-specialists. If the drugs were given with the explicit intention of hastening death, the decision was termed “euthanasia” if “someone other than the patient at the patient ’s explicit request had administered the drugs”; physician-assisted suicide if “drugs had been prescribed or supplied and self-administered”; and “life abbreviation without explicit patient request” if there had been no explicit request from the patient.  

The reasons for an end-of-life decision included (along with other motives) the “wish of the family” (28%) and an “unbearable situation for relatives” (12.4%).

Since cancer is the disease most often mentioned as a trigger for a euthanasia request, it is not surprising that requests for euthanasia are higher amongst cancer patients.  The authors believe that “in Belgium assisted dying has clearly become a part of medical practice in the care of cancer patients and that the various disciplines of oncology need to be trained in dealing with euthanasia requests”.

The 1.8% of deaths which occurred without explicit request should not alarm anyone about “slippery slopes”, the authors believe. The proportion of such deaths has remained constant ever since euthanasia was legalised in 2002.

However, somewhat confusingly, the authors note that “decision-making took place without the patient’s input in almost 20% of the cases”. These decisions were not necessarily euthanasia; they could have been withholding treatment or aggressive pain relief. But as the authors note, it is still unethical.



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April
08
 

US woman discovers that her father was her mother’s fertility doctor

The genetic testing company Ancestry.com has become a leading source for people to track their heritage. However, the company warns that “We are committed to delivering the most accurate results, however with this, people may learn of unexpected connections.” 

Unexpected and unwelcome, in some cases. As with Kelli Rowlette, a 36-year-old American woman who used the company’s services to complete her family tree. Unexpectedly, the man whom the test showed to be her father was unknown to her. She thought that it was an error and complained to her now-divorced parents.

They knew immediately what the problem was. They had fertility problems and sought help from a fertility clinic in southern Idaho. Because of the husband’s low sperm count, the doctor, Gerald Mortimer,  offered to create a cocktail composed of 85% of the husband’s sperm and 15% donor sperm. the couple specified that the donor should be a college man taller than six feet with brown hair and blue eyes.

Instead, the Ancestry.com test indicates, Dr Mortimer used his own sperm. He remained the doctor of Ms Rowlette’s mother and delivered her in 1981, without ever divulging the secret.

She and her parents are The family is suing Mortimer and Obstetrics and Gynecology Associates of Idaho Falls for US$10 million, accusing them of medical negligence, fraud, battery, negligent infliction of emotional distress and breach of contract.



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April
07
 

When should we provide life sustaining care for premature babies?

A new article in Bioethics criticises policies in neonatal care units that mandate the withholding of treatment from babies born before 25 weeks gestation.

Neonatologist Manya J Hendriks (University Hospital Zurich) and paediatrician John D Lantos (Children’s Mercy Hospital) argue that many extremely premature babies -- babies born between 22 weeks and 25 weeks gestation -- can survive and, indeed, develop healthily if given adequate treatment. Yet many neonatal intensive care units in Europe and North America have policies based on estimated-gestation age (EGA), and these units routinely withhold treatment from extremely premature infants based solely or primarily on the fact that they were born before 25 weeks gestation. Units in France and the Netherlands will typically not intervene in cases where children were born prior to 24 weeks gestation, and in North America there is wild variation among the treatment policies of different units.

According to the authors, EGA-based policies are “contrary to both medical norms and to most theories of justice”. Instead, the authors argue for an “individualised approach” to treatment decisions based upon the likelihood of an intervention’s success.

The criteria for limiting treatment in preemies, as in any patient group, should include a combination of (a) poor prognosis for survival, (b) likelihood of unacceptable disabilities, (c) burdens of treatment, (d) costs and cost-effectiveness, and (e) informed consent and shared decision-making with parents. A just system would apply those criteria to all patient groups. Our current approach of denying treatment to some premature babies when it is provided in situations where it is less cost-effective to patients with a worse prognosis is unjust.

In evaluating current neonatal care policies, the authors speculate that neonates are sometimes seen as “conditional persons” with less of a claim on our health care resources than fully-developed adult human beings. The authors argue that this view is contrary to basic egalitarian principles:

We assert that newborns, even those born prematurely, are full-fledged members of the human community and have the same right to treatment as other humans. This entails giving extreme preterm babies the best possible chance to life. Policies and practices that limit treatment based on gestational age alone violate this basic principle of justice.


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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April
07
 

Organ donation in an age of social media

A multitude of solutions have been proposed to solve the problem of chronic organ shortages in Western nations. One recent proposal, outlined in an article in the April edition of Bioethics, considers how social media might be utilised to solicit more donations.

Warwick Medical School academics Greg Moorlock and Heather Draper suggest that governments should consider utilising a social media platform akin to Facebook to solicit donations for patients in need of a transplant. Moorlock and Draper suggest that the controlled release of recipient information -- information that takes the recipient from being a “statistical individual” to an “identifiable person” -- could greatly increase the number of organs donated by living donors. The authors write:

One can appeal to people by providing facts, figures, and impartial generalized reports, but something that prompts a stronger and immediate emotional reaction may be more effective at motivating them to provide a solution...using ‘identifiable victims’ within a personalized approach to promoting donation may therefore be an effective way to increase living kidney donation.

The authors do not outline a concrete model for their proposal, though they suggest that a government-run website with donor profiles and contact details would be appropriate.

They caution against a range of pitfalls for a state-run donor-recipient matching service. The website could turn into a “beauty-contest”, and it could also be the unwitting catalyst for an underground organ market (by virtue of donors and recipients covertly exchanging money for organs). Yet the authors suggest that the potential for such a service means that it is at least deserving of further research:

Further research exploring responses to social media organ donation campaigns, as well as motivations behind Publically Solicited Donation (PSD), more generally would be extremely helpful for establishing how our suggested approach could be best used...if implemented correctly, [this approach] could increase rates of living kidney donation without significantly undermining the justice of kidney allocation.


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April
07
 

Rationing ventilators at the end of life

What do we do when we don’t have enough life support machines for critically ill patients? A doctor from Rwanda offers a unique perspective in the latest edition of The Hastings Center Report.

Noah Polzin-Rosenberg, a former Harvard academic who now runs a training program for emergency doctors in Rwanda, describes the agonising decisions that need to be made in his severely underfunded ICU ward, where only two ventilators are available for critically-ill patients. Unlike in Western countries, health care systems such as that in Rwanda cannot afford to offer wide access to critical care for patients.

Polzin-Rosenberg describes one case in which two patients were already using the ventilators, while another patient, a young woman suffering from severe internal bleeding, had just arrived in need of artificial ventilation. Dr Polzin-Rosenberg and his team needed to make the heartbreaking choice between withdrawing artificial ventilation from a patient with a poorer prognosis to support the young woman (who could likely survive given adequate treatment) or alternatively leaving the other two patients on the ventilators and letting the woman die. He writes:

In Rwanda most cases like this end badly. You latch onto a lost cause, spend your social capital pushing everyone to double their efforts, order all the right tests and treatments. But some key part of the system fails and the patient dies anyway. The family has spent the children’s school fees on your orders. You’ve just demonstrated what everyone but you already knew: poor people die from treatable diseases all the time, despite all the good intentions you bring.

In this case, the team chose to keep the two patients on ventilators, while providing manual ventilation to the third. Miraculously, the young woman’s internal bleeding stopped, her breathing became regular again, and she recovered consciousness in a matter of hours.

Polzin-Rosenberg observes that this lucky outcome does not take away the need for a culturally-sensitive ethical framework to deal with difficult allocation decisions:

The temptation is to focus on the thing—the ventilator itself—as the crucial element and press to buy more, mistaking the problem for one of resource scarcity only. But we need a culturally relevant ethical framework to guide the use and withdrawal of ventilators and similar life-sustaining tools...The intangible need for an ethical framework hides beneath apparent scarcity and, when this need is not addressed and luck runs out, one salvageable patient can die for want of a ventilator that serves only to prolong the suffering of another.


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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April
07
 

Debate intensifies over Down syndrome abortions

Political commentators in the US have clashed over new state legislation that seeks to prohibit abortion on the grounds of Down Syndrome. In an op-ed in the Washington Post early last month, journalist Ruth Marcus argued that legislative moves to ban Down Syndrome abortion were “unenforceable, unconstitutional -- and wrong”. Marcus argued that the decision to terminate a pregnancy based on a Downs diagnosis should “be left to individual women, not to government officials who believe they know best”. She criticised North Dakota, Ohio, Indiana and Louisiana for passing legislation that prohibited abortion based solely on the grounds of Down Syndrome.

In a scathing response, conservative political pundit George F. Will wrote that the real “Down Syndrome problem” is the “ethical complacency” with which people around the world choose to abort trisomy-21 children. Will alerted readers to the near 100% abortion rate of Downs pregnancies in Iceland, describing this feat as a form of “genocide”.

Late last month, American journalism lecturer Tim J. McGuire entered the debate, arguing that, while abortion decisions should remain an individual choice, the decision to abort a Downs child was “just plain wrong”:

Everybody is different in some way, and everybody has a special contribution to make to the world. We enter dangerous ground when we decide some gifts are worth exalting and others are worth destroying.

Trinity International University academic Neil Skjoldal made a similar observation, writing in a blog post that “when we decide who to treat as people, we dehumanize all”.



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

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April
07
 

The ultimate First World problem: cosmetic surgery for my fish

Unnecessary and expensive cosmetic surgery cops a hiding in BioEdge from time to time for departing from the traditional view of medicine as restoring health instead of reinforcing body image stereotypes.

But what if the body belongs to a large-scaled fish with sage-like whiskers and an aggressive personality?

The New York Times recently ran a feature about the Asian arrowana fish, the world’s most expensive aquarium fish. The cost of a single fish ranges from hundreds of dollars per fish to tens of thousands. A collector from China is said to have purchased an albino specimen for US$300,000. With prices that high Eugene Ng, a Singaporean breeder, can also practice as a piscine cosmetic surgeon.

He gave it an eyelift for the benefit of the NYTimes. “I know some people think it’s cruel to the fish,” says Mr. Ng. “But really I’m doing it a favor. Because now the fish looks better and its owner will love it even more.” 

Other procedures include fin jobs and tail tucks.

American journalist Emily Voight, author of The Dragon Behind the Glass: A True Story of Power, Obsession, and the World’s Most Coveted Fish, says that the arrowana has a special cachet in Asia, even though its popularity dates back only to the 1980s:

In Chinese, the creature is known as lóng yú, the dragon fish, for its sinuous body plated with large scales as round and shiny as coins. At maturity, the primitive predator reaches the length of a samurai sword, about two to three feet, and can be red, gold or green. A pair of whiskers juts from its chin, and its back half ripples like the paper dragons in a Chinese New Year parade. This resemblance has spawned the belief that the fish brings good luck and prosperity — that it will even commit suicide by vaulting from its tank, sacrificing its life to save its owner.

A fish that loyal deserves to have cosmetic surgery!



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April
07
 

Nuffield Council issues brief note on whole genome sequencing of babies

The Nuffield Council on Bioethics has published a briefing note on whole genome sequencing of babies.

Whole genome sequencing is starting to be used in the UK’s National Health Service in the care of seriously ill babies, and will also become available through commercial companies. The technology can reveal large amounts of genetic information. But this raises questions about how this information will be interpreted, shared with parents, stored and used by others. While costs are falling, interpreting results remains difficult, time-consuming, and expensive.

Whole genome sequencing can help to diagnose a seriously ill baby with a suspected genetic disease, or to predict how a baby will respond to medicines. It could also be used to predict a baby's chance of developing disease in childhood or adulthood, to find out about genetic factors that could affect future siblings, and to contribute to research databases to help better understand genetic disease.

Whole genome sequencing of babies raises important questions about what kind of genetic information should be shared with parents, how parents can be supported to make informed choices, and how genomic information should be stored and accessed by others, such as researchers. Researchers generally agree that direct-to-consumer genetic tests for children should normally be deferred until they are adults.

There are also broader questions about whether increased uptake of whole genome sequencing will change views about genetic variation and disability in society.

The Nuffield Council’s briefing note concludes that:

  • Whole genome and exome sequencing has the potential to improve the care and treatment of seriously ill babies.
  • The consequences of sharing any additional findings with parents are not yet known, and how genomic data should be stored, accessed, and used requires further public consideration.
  • There is ongoing debate about whether genome sequencing could be used to expand NHS newborn screening to include more specific genetic conditions, and how the benefits and harms of screening programmes should be weighed.
  • Within the medical genetics community, using whole genome sequencing to look opportunistically for a broad range of conditions and traits in babies who are not ill is widely thought to be unacceptable. However, some parents want to receive a broad range of health-related results from whole genome sequencing and might be able to access such results from commercial companies in future.

Professor Dave Archard, Chair of the Nuffield Council on Bioethics says:

"Genome sequencing technology has moved at an incredible pace, and we are starting to see the benefits that it can offer to patients with genetic disease. But we need to think carefully about how we handle the sensitive information that can be revealed. Babies do not get a say in this, making it especially important that they, and others, are not disadvantaged in their future lives by a decision taken at birth. We need to make sure there are opportunities for public consideration of the challenges."



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March
25
 

A self-driving car killed a pedestrian. What now?

A self-driving Uber vehicle has hit and killed a pedestrian in United States, raising concerns about the regulation of new autonomous vehicle (AV) technology.

Elaine Hertzberg was struck down late on Sunday night in Tempe, Arizona, after accidently stepping in front of an AV vehicle -- an Audi SUV -- travelling at approximately 60 kph.

The vehicle’s front sensor failed to detect the woman, while a safety driver present in the car was not watching the road.

Uber has announced an immediate halt on its AV trials across North America after the incident, and police are investigating. Legislation currently being discussed in Washington will look to introduce federal safety standards for the use of AV technology.

Some analysts suggest that regulations of self-driving vehicles need to be stronger. “Moving too quickly could put lives at risk and set back a technology that could ultimately help reduce the number of people killed and injured on the roads each year”, wrote Will Knight of the MIT Technology Review.

Others suggested that fatalities are inevitable -- albeit far less likely -- with self-driving vehicles. The Economist argued that, while self-driving vehicles will reduce the number of fatalities, “the sad truth is that there are bound to be fatal accidents on the road to a driverless world”.

These robot vehicles have a link to bioethics, especially to the well-known utilitarian trolley problem. After all, someone has to program them to make “decisions” about what to do when faced with conflicting choices.

Last year the German Federal cabinet adopted 20 recommendations by the Ethics Commission on Automated Driving, as a basis for the local car industry to advance its driverless technology. But it noted that “at the level of what is technologically possible today […] it will not be possible to prevent accidents completely. This makes it essential that decisions be taken when programming the software of conditionally and highly automated driving systems.”



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March
25
 

The shadowy world of ‘euthanasia fundamentalism’

Is Stephen King looking for a new plot for a novel? How about the activities of a shadowy network dedicated to helping people commit suicide? It operates outside the law with the connivance of authorities; its reach is international; its spokesmen are well-known, but are distant from the increasing number of deaths....

Something like this exists in Australia (Philip Nitschke’s Final Exit International); the UK (ditto); and the United States (Final Exit Network). And now a similar group has emerged in the Netherlands.

The Dutch Public Prosecutor has opened a criminal investigation into the Last Wish Cooperative (Coöperatie Laatste Wil) , which claims to distribute a deadly powder to people who want to commit suicide. Despite the notoriety of Dutch end-of-life legislation, assisted suicide without the help of a doctor is strictly illegal. But after a 19-year-old girl killed herself with a lethal powder last month, public attention has focused on CLW’s activities, even though it appears that she did not obtain the substance through CLW.

CLW announced last September that it would make available a suicide agent, which it called “X”, to its members. Therefore the public prosecutor suspects that CLW members are “participating in an organization that aims to commit crimes”. 

According to its website, “Cooperative Last Will accommodates people who favour the concept of assisted suicide and self-euthanasia without intervention of doctors and want to make early preparation by joining with others who share their views.”

There appear to be links to Australian activist Philip Nitschke. He lives in the Netherlands and his book The Peaceful Pill Handbook is recommended by CLW. He enthusiastically welcomed CLW’s announcement:  

“With the wide, legal availability of this new drug, no one will bother with a restrictive euthanasia legislation that requires people close to death to obtain permission from a doctor to die. When the time is right, people craving a peaceful death, will simply take this new drug. No one will bother with the legislative safeguards in new proposed legislation, when this product becomes available.”

Perhaps the prime force behind the emergence of CLW (and the other organisations) is euthanasia fundamentalism. Several groups promote euthanasia in the Netherlands, but always within the limits imposed by the law. Fundamentalist groups believe, however, that no restrictions are ethical; access to the means for suicide is a universal human right.

It’s interesting to note that the spokeswoman for CLW is Petra de Jong, a distinguished doctor who formerly served as director of the Dutch Association for a Voluntary End of Life (NVVE), which operates within the law. She was even made a Knight in the Order of Orange-Nassau for services to euthanasia. Perhaps she now feels that the Dutch law, however liberal it may seem to outsiders, is too restrictive.



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March
25
 

One way to beat the ‘obesity apocalypse’

A leading doctor has called for a hundred-fold increase in government-funded bariatric surgery for teenagers as the only way to save the United Kingdom from an “obesity apocalypse”.

Professor Russell Viner, the new president of Royal College of Paediatrics and Child Health, said that this would be the only way to save them from the “vicious cycle” of a poor diet and bad health.

He also called for a ban on TV advertisements selling unhealthy foods before 9pm and school inspections to assess how they help pupils' health.

Speaking to the Daily Telegraph, Professor Viner said: 

“There are two great epidemics affecting our children and young people - obesity and mental health problems, and in some ways they are linked. In a sense they are new horsemen of the apocalypse. We used to have famine, pestilence and so forth - famine now we've largely conquered and now we have the opposite problem - that of feast.”

Professor Viner told the media:

“Becoming overweight or obese is easy, especially in 21st century Britain. Portion sizes have creeped up and unhealthy food and drink is promoted everywhere – on the streets, on television, social media and on in shops – and it is at rock bottom prices. We need a culture that promotes healthy living. We strongly urge Government to go bold with their new obesity strategy.”



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March
25
 

The morally messy world of international NGOs

The topic of complicity, or cooperation in evil, poses a particular problem for the utilitarian ethics which currently predominate in bioethics journals. Surprisingly, but consistently, Peter Singer, the doyen of utilitarianism, ended up defending the guards of Auschwitz in his recent book The Most Good You Can Do.

“Strictly utilitarian effective altruists … would have to accept the implication that, on a plausible reading of the relevant facts, at least some of the guards at Auschwitz were not acting wrongly.”

Right or wrong, this judgement does not square with the moral intuition which led a German court to sentence a 94-year-old bookkeeper to four years in jail for facilitating mass murder at Auschwitz in 2015.

The problem of complicity is alive and well for international NGOs like Medecins Sans Frontieres. In a recent article in the Journal of Medical Ethics, several of its staff and an ethicist at the British Medical Association tackle the tricky issue of how MSF (and other NGOs) should behave when their humanitarian activities also give effective help to oppressive regimes. They give three examples of MSF’s work amongst Rohingya refugees, with Syrian refugees in Jordan, and in Libya.

The academic literature on complicity is surprisingly well-developed, with many distinctions and sub-headings -- conspiracy, co-operation, collusion, connivance, condoning, consorting, contiguity, dirty hands, spattered hands, etc. However, the authors are interested in examining whether the use of the concept of “complicity” is enough to evaluate the morality of an NGO’s decision to stay or leave, cooperate or stand aloof.

They argue that at least a utilitarian understanding of complicity, such as Singer made, which balances good outcomes against bad, is not enough. However, this might lead to another moral problem: moral narcissism. This is “the possibility that where humanitarian actors inadvertently become implicated in wrongdoing, they may focus more on their image as self-consciously good actors than on the interests of potential beneficiaries”.

Somewhere in the middle is the grey area in which well-intentioned NGOs operate.

So, they maintain, intentions do need to be taken into account – which are anathema to a utilitarian calculus. Citing Bernard Williams, the contemporary British moral philosopher who was a formidable foe of utilitarianism, they say

“moral agents have good reasons to seek to realise their (good) personal projects and, at times, their commitment to these projects will be in tension with the demands of utility. There can be something incompatible between the demands of personal integrity—our virtuous desire to realise our self in the world—and the demands of consequentialism.”

The moral responsibilities of NGOs may seem like an arcane discussion but it could shed some light on today’s increasingly bitter disputes over conscientious objection to abortion, euthanasia, and the like.



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March
25
 

Will Guernsey become a suicide haven as well as a tax haven?

Guernsey could be the first place in the British Isles to legalise assisted suicide. Better known as a tax haven, the tiny island off the coast of Normandy, has only about 65,000 residents. The island’s chief minister, Gavin St Pier, is backing a bill in the Bailiwick’s 40-seat Parliament based on the Oregon model. It is due to be debated in May.

The bill permits people who are terminally ill, mentally competent and have less than six months to live, to end their lives with the help of a doctor.

Mr St Pier, whose father died a distressing death from cardiovascular disease nine years ago said: “This is about giving people choice and a sense that they have some control themselves, rather than being frightened, out of control and in the hands of others.”

Strictly speaking, Guernsey is not part of the United Kingdom, but its relations with its Channel neighbour are so close that the bill raises the prospect of Guernsey becoming a suicide destination.

However, as a British Crown dependency, major legislation has to be approved by the UK Parliament, which may not look kindly upon an offshore suicide haven.

The local branch of the British Medical Association is opposed to assisted dying and the island’s local branch and warns that legalisation could lead to problems recruiting and retaining doctors

“Doctors need to be registered with the General Medical Council in the UK in order to practice medicine. The GMC offer excellent guidance for doctors on assisted suicide requests from patients and makes it clear it is a criminal offence for anyone to encourage or assist a person to commit suicide. As doctors need to remain GMC members to work in Guernsey a unilateral change in legislation in Guernsey would make it difficult to understand how these two conflicts could be reconciled.”



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March
25
 

Daniel Callahan backs ‘slippery slope’ on assisted suicide

The idea of a slippery slope for euthanasia is mocked by supporters.  But in a recent opinion piece in the Bioethics Forum of The Hastings Center, one of America’s most respected bioethicists endorses it. In a brief opinion piece, Daniel Callahan, the co-founder of The Hastings Center, the world's first bioethics research institute, and the author or editor of 47 books, writes:

I have been opposed to physician-assisted death for well over 30 years. ....

I came into the debate with wariness and curiosity. On the one hand, my work on end-of-life care and the emergent hospice movement made clear that many deaths could be painful, psychologically traumatizing, and messy. I could well understand interest in that problem, but I wondered why the growing hospice program was not enough. What was to be made of the zealotry of proponents for euthanasia or physician aid in dying? I was especially curious about their long-term aspirations.

I also became interested in the pressures that medical progress was putting on care of the dying. Most notably, it has been increasing the possibility of medical efforts to incrementally find ever more ways to keep the sick and dying alive. The logic of medical progress has an unpleasant feature. It is the gradual movement from short lives and quick death to longer lives and extended dying. The quick deaths from heart attacks in my parents’ generation have given way to longer lives and Alzheimer’s disease. Is that progress?

Interest in assisted death comes, in part, from a culture of medical progress that does not know how to stop extending our lives. Medicine is particularly good in extending our dying—and much of that extension is in old age. I believe that the care of the elderly is rapidly coming to be a crisis for many countries, rich and poor. Inevitably, this crisis has also meant a growing attraction to assisted death. Some studies show that suicide rates are especially high in countries with low birthrates, rapidly aging populations, and significant health care and caretaker costs. The U.S. may not be spared.

My introduction to the Dutch scene in the late 1980s was to see a slippery slope in the making, first in the Netherlands and then in other countries. In Belgium, for example, euthanasia is now legal for terminally ill children, as well as for adults who have mental illness and dementia, and who are “tired of living.” The loosening of restrictions on who qualifies for euthanasia is evidence of the high value placed on individual autonomy in determining the time and means of death. It is a concept with no inherent limits.



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March
10
 

Till death do us part: Couple die together in Oregon

A controversial new documentary has been released in the US telling the story of an Oregon couple who took their own lives via lethal medication in April 2017.

The documentary recounts the story of Charlie and Francie Emerick, 88 and 87 respectively, who last year applied to the Oregon Health Authority for a lethal prescription after being diagnosed with terminal illnesses. Charlie was suffering from advanced Parkinson's Disease, and Francie had battled for several years with lymphoma.

The Emericks died at home in April 2017, surrounded by family. They had been married for 66 years.

“They were each other‘s best friend,” Jerilyn Marler, their eldest of the couple’s three children, told reporters. “In their last years, Dad was Mom’s eyes and Mom was Dad’s ears. It was natural for them to want to die together”.

The documentary presents the couple’s decision in a very favourable light, though some close friends and relatives disagreed. Bioethicist Thaddeus Mason Pope speculated that they may have been the “first couple” to take their lives together under Oregon’s Death with Dignity law. Nearly 1,300 people have died in Oregon via lethal prescription since the enactment of the law in 1997.



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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March
10
 

Netherlands euthanasia case under renewed scrutiny

In a new article in the Journal of Medical Ethics, researchers from the National Institutes of Health offer an insightful analysis of one of the most controversial cases of euthanasia to have occured in the Netherlands.

Bioethicists David Gibbs Miller, Rebecca Dresser and Scott Kim analyse the official medical records of a severely demented woman who was euthanized in Holland in 2016. The woman, who was in her 70s, had her life ended by a geriatrician in aged care facility after having written an advance directive indicating her wishes for receiving euthanasia.

The advance care directive was written several years before her death, and there has been much discussion about whether it remained binding.

The most controversial feature of the case, however, was the manner in which the woman was euthanised. The supervising doctor mixed sedatives into the coffee of the woman without her knowledge. When the sedatives did not work, the doctor administered a stronger drug subcutaneously.  

While the doctor was administering the lethal dose, the patient tried to get up and had to be restrained by family members.

The authors observe that there is insufficient scrutiny of the process by which Advance Care Directives are prepared:

...physicians and the RTE [Dutch regional euthanasia review committees] accept a low threshold of decisional capacity for preparing AEDs. The RTE’s Code of Practice states that in early dementia, "the patient generally…is decisionally competent in relation to his request for euthanasia". This apparent presumption of capacity in early AD (and in the case [of this patient], a much more advanced state) is incompatible with existing data on Alzheimer’s disease and decisional capacity.

The authors also question whether an Advance Care Directive should override the contemporaneous wishes of a severely demented patient:

The failure to provide adequate protection to a vulnerable patient was exacerbated by the failure to respect her contemporaneous interests and statements. By privileging the AED as the expression of Mrs A’s ‘real self ’—a judgement that itself was dubious in light of her questionable capacity and understanding when she made the AED—physicians failed to protect her … when they disregarded her contemporaneous statements and actions.


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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March
10
 

Landmark Indian ruling on advanced care directives and withdrawal of treatment

India's Supreme Court has handed down a landmark ruling authorising the use of “living wills” and streamlining the process for the withdrawal of treatment from dying patients.

The ruling -- which was in response to a plea made to the court by the public interest group "Common Cause" -- allows adults to write an advance directive indicating that they do not wish to receive life support if in a comatose or permanent vegetative state. The five-judge panel also outlined a process by which doctors and family members could apply through the courts to have life support withdrawn from a terminally ill and incapacitated patient.

The ruling comes three years after the death of Aruna Shanbaug, an Indian nurse who had been in hospital in a persistent vegetative state for over four decades, after being raped and strangled in 1973. Shanbaug was at the centre of a nationwide debate over the ethics and legality of the withdrawal of treatment.

“This is an important, historic decision, which clears the air,” said supreme court lawyer Prashant Bhushan.

“Everybody will breathe a sigh of relief, because people were earlier apprehensive that if they withdrew life support, they could be prosecuted for culpable homicide,” he added.



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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March
10
 

Martin Shkreli, “pharma bro”, sentenced to seven years in prison

Notorious former pharmaceutical executive and social media personality Martin Shkreli has been sentenced to seven years in prison, after being found guilty of defrauding investors.

On Friday, Shkreli wept in court as district court judge Kiyo Matsumoto handed down the sentence, which was more lenient than than the 15 years that prosecutors hoped for, but more severe than the 18 months requested by the defence.  

Shkreli was the co-founder of several hedge funds, the founder of biotech company Retrophin and the founder of the pharmaceutical company Turing Pharmaceuticals. He received widespread criticism in 2015 after he raised the price of the HIV-AIDS drug Daraprim by a factor of 56 (from $13.50US to $750US).

The crimes for which Shrekli was convicted -- two counts of securities fraud and one count of consiring to commit securities fraud -- were unrelated to the Daraprim controversy.

Judge Matsumoto questioned Shkreli’s remorse, citing some of the 34 year-old’s social media antics following his conviction. Shkreli’s bail was revoked in September after he offered his online followers a $5,000 bounty if they could obtain a lock of Hillary Clinton’s hair.

The judge also ordered Shkreli to forfeit $7.3 million in a brokerage account and personal assets, including a one-of-a-kind Wu-Tang Clan album that he boasted of buying for $2 million.

Shkreli told the court that he was very sorry for his actions, and apologised to his investors.

"I am terribly sorry I lost your trust," he said. "You deserve far better."



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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March
10
 

What does it mean to be a genetic parent?

In a world where assisted reproduction is becoming increasingly common, bioethicists are beginning to ask the question: “what counts as genetic parenthood?”.

It is tempting to think that genetic parenthood is about sharing half of one’s genes with another person. But this alone is not enough. Imagine a situation in which you had an identical twin, and your twin had a child. The child of your identical twin would share half of your genes. But would this make you their parent as well? Our intuitions tell us “no”.

In a new article in The Philosophical Quarterly, State University of New York philosopher Monika Pitrowska attempts to offer an account genetic parenthood that deals some of the complexities of the parent-offspring relationship. According to Pitrowska, there are three criteria that must be met for something to count as genetic parenthood: overlap, development, and persistence.

Readers may consult the article for a full development of the argument. Yet to provide a basic summary, Pitrowska argues that mere genetic similarity, or causal relationships between parents and children, are insufficient as a definition of parenthood. An vital feature of genetic parenthood is the passage of genetic material from one generation down through several successive generations. Pitrowska develops an definition that tracks this specific feature of parenthood.

As Pitrowska observes, the question of genetic parenthood is more than an esoteric, philosophical matter. While assisted reproduction has transformed society’s understanding of the family unit, our concern to know our genealogy remains. Furthermore, in a world where we are questioning whether mitochondrial replacement therapy creates three parent babies, or whether surrogates have a genetic link to the children they bear, it is important to achieve conceptual clarity.



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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March
04
 

After 14 years, California’s stem cell agency finally gets a royalty cheque

Fourteen years after Californians voted an overwhelming Yes! to stem cell research, including human embryonic stem cells, and created the California Institute for Regenerative Medicine (CIRM), the agency has received its first royalty cheque. The amount? US$190,345.87.

Not even the staff of the controversial CIRM were inclined to boast about the return on investment for Californian tax-payers. Proposition 71, which voters approved in 2004, authorised a $3 billion bond issue to finance the CIRM. Instead, the CIRM’s communications director described it simply as “a little piece of history” and wrote on its blog that:

Maria Millan, CIRM’s President & CEO, says the amount of the payment is not the most significant part of this milestone – after all CIRM has invested more than $2.5 billion in stem cell research since 2004. She says the fact that we are starting to see a return on the investment is important and reflects some of the many benefits CIRM brings to the state."

However, the CIRM’s critics were scathing.

John M. Simpson, of Consumer Watchdog, said, “Once again it’s clear that Proposition 71  was oversold by its sponsors. Despite campaign hype, it’s only now that we are seeing the first royalty payment and a rather modest one at that."

Bernard Munos, a senior fellow at FasterCures. told  California Stem Cell Report, an invaluable source of information on the agency:

"The $200,000 check from City of Hope should be acknowledged, but it only represents 0.02% of the $1.1 billion in royalties that were promised to California taxpayers -- and does not even cover the annual salary of CIRM’s part-time vice chairman.

And Marcy Darnovsky, executive director of the Center for Genetics and Society, told California Stem Cell Report:

"Many Californians voted to establish CIRM because they believed the promises that its backers were making: that we'd soon see revolutionary medical breakthroughs, that our state would get back a billion dollars or more in royalties, that the agency would be run by an 'independent' board. Almost a decade and a half later, none of that has come to pass ...

"The royalty check ... is less than a drop in the bucket. It's almost as if you loaned someone $3000 (at your own expense) because they promised to do some good work and pay you back $1000. Years later, they haven’t finished the work but they are offering you twenty cents instead of $1000, and asking for thousands more."

During the campaign for Proposition 71, supporters strongly argued that destructive research on human embryos was absolutely necessary for the science to proceed and that cures would certainly come. Almost 14 years later, there have been no cures. The royalty cheque was for a potential therapy for glioblastoma, a deadly brain tumour – but even this not on the market yet. Thus far, it has only passed Stage I clinical trials and been written up in glowing terms in O, The Oprah Magazine.



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March
04
 

Should lesbian couples have access to mitochondrial replacement therapy?

“Three parent babies!!!!” was a shock-horror headline across the world when the UK was debating mitochondrial replacement therapy a couple of years ago. This is a technique to avoid passing on mitochondrial diseases from mother to child. There are different methods, but they involve combining the nuclear DNA of the mother’s egg with healthy mitochondrial DNA from another woman and fertilisation with sperm.

The government’s fertility regulator, the HFEA, explained that this was meant to “to avoid passing on serious genetic diseases to future generations”. Under existing legislation, MRT can only be used for this purpose.

Much of the opposition to the technique in a very heated debate was the unconventional matter of a child sharing two mothers, or at least, sharing the genes of two women. Many found this profoundly unnatural.

However, there is a group of women who might welcome this – lesbian couples. For them, it could be a way of creating a child with a shared genetic heritage.

Or so argue Giulia Cavaliere and César Palacios-González, of , King’s College London, in the Journal of Medical Ethics. Their reasoning is quite interesting. (It is spelled out a bit more simply in a blog post.)

First of all, against the headlines about “cures” for desperately ill children, they insist (as did many opponents of MTR) that

no MRTs can be considered therapeutic as they do not cure children/embryos affected by mtDNA diseases, but they are rather a means to create children that are not affected by mtDNA diseases.

Second, they ask, if “cures” are not the reason for the existing legislation, what is? Their answer might have escaped the MPs who votes for it, but it fits:

the rationale to offer MRTs is to allow women at risk of transmitting mtDNA disease to have healthy children that are genetically related to them. The rationale, in other words, is to expand these women’s reproductive freedom ...

Third, if reproductive freedom (and not the health of a child) is the most fundamental reason, then all women deserve to take advantage of MTR, not just the mothers of sick children. Lesbian couples are equally needy and deserving.

Providing access to MRTs to women at risk of transmitting a mtDNA disease and not to lesbian couples is in our view contrary to one of the tenets of morality, which demands to treat like cases alike. Denying access to MRTs to lesbian couples is morally unjustifiable in as much as it curtails the enjoyment of certain freedoms to a certain group without good reason, whilst allowing others to enjoy the very same freedoms.

Some bioethicists would call this the slippery slope in action. Others would respond that it is merely extending the inherent logic of the legislation. In any case, it certainly is an unexpected interpretation of the legislation.



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March
04
 

Euthanasia performed on Canadian prisoner

A request by a Belgian prisoner for euthanasia made international headlines not too long ago, even though he was not permitted to take advantage of the legislation.

But in a measure of how enthusiastically Canada has embraced euthanasia, one prisoner has already been killed under its Medical Aid in Dying (MAID) law, and three others have been approved. According to a report in CBC News, the death took place in a hospital outside of the prison, under the supervision of two correctional officers.

Correctional Service Canada (CSC) told CBC News that it had, to date, received eight requests for MAID.

CSC is now permitted to organise MAID in a community hospital — but it can also take place in a penitentiary regional hospital or treatment centre in exceptional circumstances and at the request of the inmate.

Correctional Investigator Ivan Zinger criticised the possibility of inmates being euthanised in a prison in a letter to the CSC head:

"Practically and perceptually, I simply can not imagine a scenario where it would be considered acceptable to allow an external provider to carry out a MAID procedure in a federal penitentiary,"

Zinger said that MAID should occur only outside prisons. A prohibition on MAID within prisons would protect the integrity of the system now and in the future, when eligibility for assisted death could expand to prisoners suffering from acute psychiatric illnesses – and in prisons there are a number of these.



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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March
04
 

Germline modification ‘would violate human dignity’

Three members of the Centre for Genetics and Society, a California-based lobby group, have published a stern critique of germline modification on human rights grounds. Writing in Open Global Rights, Marcy Darnovsky, Leah Lowthrop, and Katie Hasson argue that changing the genome “would violate human dignity, a concept at the core of human rights”.

it’s important to remind ourselves why key human rights documents specifically prohibited these practices, long before they were technically feasible. The medical justifications for human germline modification fall short, and the temptation to “enhance” future generations is profoundly dangerous. Down that road, our scientific achievements would all too likely become not instruments of enlightenment and emancipation, but mechanisms for exacerbating inequality. And our desire to improve the human condition would lead us away from the realization of the human rights that we know are needed for individuals, societies, and humanity to thrive.

The rapid pace of these developments creates an urgent need for the global community—perhaps gathering under UN auspices—to reaffirm existing agreements and clearly prohibit the dangerous and unethical use of reproductive gene-editing.



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March
04
 

Will a code of ethics make researchers ethical?

Research ethics is seen by many as an exercise in compliance. The so-called “principles” of research ethics, on this view, provide a minimum standard of ethical practice and they shield against the risk of professional sanction.

But a code of ethics drafted by the World Economic Forum Young Scientists Community offers a loftier picture of ethical practice in scientific research.

The Code of Ethics for Researchers encourages scientists not just to avoid negligence and harm, but also to consider the extent to which their research contributes valuable knowledge to some discipline or other, and whether their work has some practical impact on the general public. The code asks researchers to consider, for example, whether they are “pursuing the truth” by “following the reaearch where it leads, rather than confirming an already formed opinion”.

There are seven sections within the document, each beginning with a principle like “minimize harm” or “support diversity”.

The code has been received well by many within the scientific community, and Nature magazine has gone as far as writing an editorial exhorting readers to examine how their own practice measures up to the code:

[The purpose of the code] is to stimulate open conversations “to safeguard a positive and sound research environment”. Accordingly, Nature readers may do themselves and others some good … [if they] discuss the ideals expressed, and consider how to live up to them in their own lab, research institution or funding agency. We at Nature are trying to do so, too.

While some see this moral awakening as a positive sign, others are sceptical of the code’s ability to change practice. Speaking at the World Economic Forum earlier this year, UC Berkeley bioethicist Jodi Halpern said scientists need to be taught how to think ethically:

"People need rigorous education in ethical reasoning, which is just as rigorous as science education... I’d like to have every doctoral student…pass a rigorous exam showing how they would deal with certain ethical dilemmas. And everybody who will be the head of a lab someday will have really learned how to do that type of thinking.” 


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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March
04
 

The puppy has two faces: Streisand on cloning dogs

Sad about losing your beloved poodle? Why not clone them?

In an interview with Variety magazine last week, singer and actress Barbara Streisand opened up about cloning her long-time soul-pet Samantha for US$50,000.

Samantha passed away in 2004, but Streisand couldn't stand the thought of living without him -- so she tried to keep a little bit of him alive:

I just wanted to keep her with me in some way … Sammie’s doctor took some cells from insider her cheek and the skin on her tummy just before she died. And we sent those cells to ViaGen Pets in Texas...

The cloning process unexpectedly produced four puppies, but Streisand gave two away to friends and kept the other two.

Each puppy is unique and has her own personality. You can clone the look of a dog, but you can’t clone the soul.

Still, every time I look at their faces, I think of my Samantha … and smile”.  

Viagen Pets has cloned thousands of animals over the last 15 years, and the company reports that it has a waiting list. “Pet’s lives are very short compared to ours”, Viagen manager Melain Rodriguez said. “So if you can clone that pet and have another one that is very similar, it’s very rewarding”. 



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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March
04
 

UK government: Parents should tell their surrogate children about their birth

The UK’s Department for Health and Social Care has released new guidelines advising that children born via surrogacy be told of their origins.

The guidelines, released last Wednesday, are intended to “ensure LGBTQ+ individuals are given equal care, and that all surrogates and intended parents are treated with due dignity and respect”. The document states:

Research suggests that openness, confidence and transparency about a child's origins from an early age (pre-school) is the best way to talk to children about their identity and origins. Your fertility counsellor should have given you the opportunity to explore how you feel about telling a child about their origins, and fertility counsellors would be happy to help you reach a decision about this at any time, as your thoughts and feelings about if, when and how to do this may change over time.

The document also tells healthcare workers that parents should be accommodated in maternity hospitals alongside a surrogate mother:

Wherever possible, it may be advantageous for surrogates and IPs [intended parents] to be accommodated away from the other mothers on the post-natal wardd to maintain privacy at a sensitive time.

Restrictions on visiting hours and overnight stays have “been found to be an issue for male, same-sex IPs”.

Jackie Doyle Price, Parliamentary Undersecretary for the Department of Health, said that the new guidelines balanced “the need for emotional support with clear legal explanations, for surrogates and intended parents alike”. 



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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February
25
 

Is the World Medical Association going to change on euthanasia?

Even though the legalisation of euthanasia has been gathering momentum around the world, the World Medical Association has refused to support it. However, the Singaporean head of the FIAMC (Fédération Internationale des Associations de Médecins Catholiques), has issued a stark warning about impending changes in WMA policy.

Dr John Lee, the FIAMC president, claims that the WMA has “plans to introduce two policy measures to facilitate worldwide abortion and euthanasia by curtailing doctors’ conscientious objection”. In an open letter to the WMA leadership he writes:

a revision is being considered to the Declaration of Oslo on Therapeutic Abortion (2006). The proposal put forward by the Working Group on Abortion Policy (WGAP) explicitly requires referral and also requires that the physician who objects must nevertheless provide “safe abortion” in some circumstances.

Member associations in Canada and the Netherlands have also requested changes in the WMA’s policy on euthanasia which would state that euthanasia is a matter for an individual doctor’s conscience. Dr Lee warns that this opens the door to dragooning doctors into a euthanasia regime:

By saying that the WMA does not condemn physicians who perform euthanasia where it is legal, the WMA is saying that euthanasia can be ethical if it is legal. For Canada and the Netherlands, with now the most liberal euthanasia laws i