Washington Post features symposium on transhumanism


As a sign of growing interest in transhumanism, the Washington Post recently featured a symposium with several distinguished writers. It may indicate a growing interest in its aspirations, in an election year when a transhumanist, Zoltan Istvan, is seriously running for President.

At the moment, transhumanism is a ill-defined and fractured movement with many different strands, ranging from more-or-less mainstream to whacky. On the mainstream side, there is the National Intelligence Council’s 2012 long-term strategic analysis document  which devotes a section to “human augmentation”. It envisages technology which will help the elderly to cope with disability and soldiers to perform superhuman feats of strength, agility and alertness. On the whacky side, there are visions of a new species of humanity and uploading consciousness to the internet.

Here are a few predictions and evaluations from the WaPo’s contributors. Most of them were solidly in favour and relatively conservative on the transhumanist spectrum.

Ronald Bailey, the science correspondent for Reason magazine and author of “Liberation Biology” and “The End of Doom.”

“The highest expression of human nature and dignity is to strive to overcome the limitations imposed on us by our genes, our evolution and our environment. Future generations will look back at the beginning of the 21st century and be astonished that some well-meaning and intelligent people actually wanted to stop bio-nano-infotech research and deployment just to protect their cramped and limited vision of human nature. If transhumanism is allowed to progress, I predict that our descendants will look back and thank us for making their world of longer, healthier and abler lives possible.”

James J. Hughes, executive director of the Institute for Ethics and Emerging Technologies

[E]merging neuroscience suggests that we will soon be able to both fix those with broken moral compasses and tune up our own internal morality … Clearly, the field of moral enhancement will need to reengage with the wisdom traditions to flesh out a more sophisticated understanding of what a mature moral character entails.

For optimal flourishing, we need to balance wisdom and compassion, self-control and transcendence. Given the freedom to experiment with our growing toolbox for self-improvement, we will each need to discover our ideal morality settings … With the aid of science, we will all be able to discover our own paths to technologically enabled happiness and virtue.

Charles T. Rubin, the author of “Eclipse of Man: Human Extinction and the Meaning of Progress, teaches political philosophy at Duquesne University in Pittsburgh.

As a result, the great powers that transhumanism promises are likely to be used not in ways that will solve human problems, but in ways that will perpetuate them yet more terribly.

That is because in a world where we have increasing power to modify our humanity, “enhancements” will still be developed by people who are not yet enhanced. Popular culture asks us to imagine how those individuals, whether in government or private industry, will make their choices in a world where darker human motives like selfishness, greed, and lust for power will play a role in decisions about what needs changing, for whom and at what price.

And those seeking enhancement will be subject to their own darker motives: to social pressures, competitive inclinations, market manipulations. Indeed, if human beings are even half as imperfect as transhumanists apparently believe, why should we trust our unenhanced opinions about what would constitute an improvement in our lives?




MORE ON THESE TOPICS | transhumanism

This article is published by Michael Cook and BioEdge 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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Bioethics commission sets out game plan for creating consensus


Rapid innovation in the wake of the development of the CRISPR gene editing technology has not caught the US Presidential Commission for the Study of Bioethical Issues napping. Armed with this tool, scientists will be eager to conduct many ethically contentious experiments with government funding -- and the Commission seems keen to facilitate this.

So, in the waning days of the Obama administration, the Commission has issued a report about decision-making in an age of bioethical change. The commission is merely an advisory body which reports to the White House and can be reconstituted or dissolved by the next President. However, its recommendations will no doubt influence policy, especially if Mrs Clinton wins in November.

Rather than dealing with a specific issue, the report, Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology, discusses how to reach a consensus on controversial issues when the broader public really doesn’t understand all the implications of policy. In the United States this has led to acrimonious debates conducted on the front pages of newspapers and on prime-time TV on issues like the death of Terri Schiavo, embryonic stem cell research, the assisted suicide of Brittany Maynard, or Planned Parenthood’s sale of foetal tissue.

Finding a way to reach a decision on such issues without Sturm und Drang is the ultimate purpose of the report. The model it proposes is “democratic deliberation” backed up by ethics education. “Democratic” does not mean that the decision-making takes place in Congress, but that it embodies qualities like respect, compromise, reason-giving, and constructive public engagement.

Ethics education is supposed to be life-long and universal, from toddlers to seasoned bioethicists:

Schools from pre-kindergarten to professional training programs can and should incorporate ethics education into their curricula to help build the ethics literacy that will enable us to reason through complex bioethical problems we all will face. Ethics education can raise the population’s ethics and scientific literacy and can help prepare everyone for the difficult conversations and decisions that bioethics presents.

The model for the Commission’s proposal comes from the United Kingdom, where the national fertility authority successfully staged a 13-month campaign to persuade Britons that mitochondrial donation was ethical and necessary. It partnered with a government-funded media office for promoting science and organises deliberative workshops, open consultation meetings, a representative survey, patient focus groups, and an open consultation questionnaire. The result was an easy win in Parliament, despite an outcry from opponents over the creation of three-parent embryos.

Whether “democratic deliberation” will work across the Atlantic in a more diverse and polarised society is hard to judge. But the Commission feels that it is the best way to break deadlocks in science policy:

It provides a morally and practically defensible way for addressing hyperpartisan gridlock. It also promotes mutual respect rather than fueling the sharp polarization and heightened differences that make consensus and legitimate outcomes nearly impossible in our current context. 





This article is published by Michael Cook and BioEdge 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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Experimentation continues on chimera embryos


A group of scientists in the US are continuing to conduct research on human-animal hybrid embryos, despite a moratorium on funding from the National Institutes of Health.

Pablo Ross, a reproductive biologist from the University of California, Davis, has been working with a research team to implant human induced pluripotent cells in pig embryos, with the hope of growing human organs in developing porcine fetuses.

Ross has availed himself of alternative funding sources in the wake of the NIH’s decision last September to withhold funding until further study was done into the ethics of chimera experimentation.

"We're not trying to make a chimera just because we want to see some kind of monstrous creature," Ross told NPR. "We're doing this for a biomedical purpose."

After injecting human cells into the pig embryos, Ross and his team implant the embryo in a pig uterus, and allow it to grow for 28 days until they remove it again for dissection.

Importantly, Ross’s team is not the only one to have continued research following the moratorium. At the beginning of this year, it was revealed that scientists at the Salk Institute in California and the University of Minnesota had created hybrid embryos with the aim of growing human organs inside farm animals such as sheep and pigs.

Some bioethicists are gravely concerned about the creation of chimera embryos. "You're getting into unsettling ground that I think is damaging to our sense of humanity," Stuart Newman, a professor of cell biology and anatomy at the New York Medical College, told NPR.

"If you have pigs with partly human brains you would have animals that might actually have consciousness like a human," Newman says. "It might have human-type needs. We don't really know."

Research into chimera embryos is still technically legal in the US. It is also legal in the UK, with the Home Office releasing new guidelines last February that would allow for research into the “huge potential” of chimera embryos, while still providing a “robust ethical and regulatory framework”. 




MORE ON THESE TOPICS | chimeras, embryo experimentation, embryo research, law, UK, US

This article is published by Xavier Symons and BioEdge 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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Time for a technoethics commission?


As another presidential bioethics commission finishes up, A US computational scientist has suggested the next US president should create a ‘technoethics commission’. 

Daniel N. Rockmore, professor of in the Department of Mathematics, Computational Science, and Computer Science at Dartmouth College, recently published an article in The Conversation advocating for the establishment of clear “social norms” for digital technologies “through a high-profile, public, collaborative process.”

Rockmore, while not wishing to engage in scaremongering, believes that many are too ready to embrace the convenience of new computer technologies without considering the potential dangers:

“…the fact remains that we are thoughtlessly deploying technologies with little concern for, or debate around, their context and implications for society.”

He suggests that digital technologies have the potential to profoundly effect the ‘human condition’, and that a commission could be a value platform in which to discuss such risks:

“…surely questions around topics like wearables, privacy, transparency, information ownership and access, workplace transformation, and the attendant implications for self-definition, self-improvement and human interaction are at the foundation of any consideration of the human condition.”

“…a commission with representation from a range of constituencies, engaged in open conversation, might serve to illuminate the various interests and concerns.”

Late last month Nature published an editorial expressing concerns about the unregulated development of artificial intelligence technology. The journal wrote, “…it is crucial that progress in technology is matched by solid, well-funded research to anticipate the scenarios it could bring about, and to study possible political and economic reforms that will allow those usurped by machinery to contribute to society.”




MORE ON THESE TOPICS | artificial intelligence, privacy, technology, US

This article is published by Xavier Symons and BioEdge 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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Looking ahead to radical solutions for ALS and cancer


Improbable as it may seem, an Italian neurosurgeon plans to transplant a head within the near future. Sergio Canavero has received worldwide publicity with his solution for degenerative diseases like ALS or for patients whose bodies are riddled with cancer. Last year a 30-year-old Russian IT worker with a crippling muscle-wasting disease volunteered for the operation when it become feasible.

Assuming, however, that the operation is successful, who will the person be? The person who once owned the head, or the person who once owned the body? Neither, according to an article in the journal Neuroethics.

We maintain that embodiment is central to personal identity and a radical alteration of the body will also radically alter the person, making her a different person. Consequently, a human head transplant will result in an individual partly continuous with the head/brain donor (in terms of connected memories and mental events), and partly continuous with the body donor (in terms of the inputs and regulatory patterns afforded by the structure and functions of the nervous system, and the self-image of this new embodiment). We conclude that the resultant person would be a new person different from both the individual whose head was transplanted and the one to whose body the “new” head is attached.

While the possibility of success in such an operation is extremely remote, the authors warn that it would be “ imprudent to be unprepared for those neuroscientific developments that can, and likely will occur in the near future”. 





This article is published by Michael Cook and BioEdge 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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Scientists discuss synthetic human genome behind closed doors


According to an exclusive report in the New York Times, 150 scientists, lawyers and entrepreneurs gathered behind closed doors at Harvard earlier this month to discuss creating a synthetic human genome.

This is scientifically and ethically controversial because it could lead to the creation of humans without parents, genetically-engineered humans or copies of existing people.

Although details of the project are secret, the organiser seems to be Dr George Church, of Harvard Medical School, a colourful geneticist who has proposed creating Neanderthal humans based on ancient fragments of their DNA. The NYTimes says that a primary goal of the meeting was to  “synthesize a complete human genome in a cell line within a period of 10 years.”

Drew Endy, of Stanford University, and Laurie Zoloth, a bioethicist at Northwestern University, were highly critical of the secrecy surrounding the meeting in the magazine Cosmos.

We note that the narrative of creation of the human is the central narrative for many religious communities. To create a human genome from scratch would be an enormous moral gesture whose consequences should not be framed initially on the advice of lawyers and regulators alone.

The perspectives of others including self-identified theologians, philosophers, and ethicists from a variety of traditions should be sought out from the very beginning. Critical voices representing civil society, who have long been sceptical of synthetic biology’s claims, should also be included. 

The creation of new human life is one of the last human-associated processes that has not yet been industrialised or fully commodified. It remains an act of faith, joy, and hope.

Discussions to synthesise, for the first time, a human genome should not occur in closed rooms.





This article is published by Michael Cook and BioEdge 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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Doctors call for government action as suicide increases


A US doctor has voiced grave concern about government inaction on increasing suicide rates in the country.

A report released late last month from the National Center for Health Statistics documented a sobering set of statistics that indicate that the suicide rate has increased during the period 1999-2014, particularly in selected demographic groups. 

The average percent increase in the age-adjusted suicide rate was about 1% per year from 1999 through 2006, which increased to 2% from 2006 to 2014. From 1999 through 2014, the percent increase in age-adjusted suicide was greater for females (a 45% increase) than males, who had a 16% increase. The suicide rate for females aged 10-14 years had the largest percent increase, a 200% increase.  

Speaking to MedScape, Columbia University psychiatrist Jeffrey A. Lieberman criticized the lack of funding for research into suicide prevention:

it's hard to understand the disconnect between the amount of resources that we have and those that are being allocated to studying them and providing care…It's hard to understand why these rates, which are really the tips of the iceberg of an overall chronically failed mental healthcare policy in this country, have not risen to the level of a national emergency, like Zika virus, Ebola, or AIDS years before.

Lieberman speculated about the possible reasons for the lack of funding:

I can only think that the reason is that there is a stigma attached to mental illness. It relates to drug abuse and the conflation of things that are not medical conditions and may relate to failings in moral character or behaviors that are sinful.

Lieberman also gestured toward the need for tighter gun laws – a comment that was very timely. Another study, released on Friday, observed a correlation between States with liberal gun laws and increased suicide rates. 




MORE ON THESE TOPICS | gun control, politics, public health, suicide, US

This article is published by Xavier Symons and BioEdge 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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Searching for meaning at the end of life


Researchers from Australia and the UK have called for greater attention to be paid to ‘spiritual care’ in the treatment of elderly patients. 

‘Spiritual care’ – care for, roughly speaking, the sense of identity, meaning, purpose and self-value of a patient – has been receiving increased attention in medical literature and clinical practice. Healthcare professionals are now calling on governments to reform ‘utilitarian’ healthcare systems to accommodate for the provision of therapies and services associated with spiritual care.

Writing for The Conversation, psychiatrists John Wattis and Stephen Curran of the University of Huddersfield discussed the need for clinicians to provide holistic treatment for elderly patients:

“The technical and the interpersonal aspects of clinical care should go together. Being prepared to assess spiritual need and deal with it – or signpost the patient to those who can help – should be part of good medical practice.”

They suggested that medical practitioners are increasingly prevented from providing adequate spiritual care to patients due to an obsession with efficiency:

“At the moment health and social care are under enormous pressure to become ever more “efficient”. Time spent with a patient or client is easy to measure – but the quality of the care offered may be reduced if workers are too rushed and stressed…We need a health and social care system that is motivated by a spirit of compassion and not by a spirit of fear…Human beings should not be treated as though they are machines and that mechanical repair is all that is needed.”

University of Melbourne aged care researchers Colleen Doyle and David Jackson expressed similar concerns. Doyle and Jackson criticised the often pragmatic approach to patient treatment in US, UK and Australian hospitals:

“Our reductionist health care model is not set up to support people in this way. Slowing down to address existential questions does not easily reconcile with frontline staff’s poverty of time…

They lauded new guidelines developed in Australia for the provision of adequate spiritual care: 

“…the development of new spiritual care guidelines brings us one step closer to supporting a meaningful existence right up to death.” 




This article is published by Xavier Symons and BioEdge 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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Vulnerability in medical contexts: interview with Steve Matthews


There has been growing interest among ethicists in the theme of vulnerability. Some have gone as far as to suggest that vulnerability could serve as a new principle in bioethics. In a recent edition of the journal Theoretical Medicine and Bioethics, a number of leading bioethicists explored the topic of ‘human vulnerability in medical contexts’. This recent journal edition – a first among any of the leading bioethics journals –provides significant insight into the notion of vulnerability and its relevance to contemporary clinical practice. Xavier Symons, the deputy editor of Bioedge, recently spoke with guest editor Stephen Matthews about the key themes discussed.

Stephen Matthews is a senior research fellow at the Plunkett Centre for Ethics and a member of the Centre for Moral Philosophy and Applied Ethics at Australian Catholic University. Steve co-edited the special edition with Bernadette Tobin, Director of the Plunkett Centre for Ethics.   

******

Xavier Symons: You contend that vulnerability need not always be seen as “an obstacle or pathology to be removed”. Do you think this idea is relevant to the treatment vs. enhancement distinction in medicine? 

Steve Matthews: Yes, it’s absolutely relevant. An implicit assumption of those whose moral position is quite permissive of the technologies of human enhancement is a kind of perfectionism, or at least a maximising kind of attitude that can tend to swamp moral contemplation regarding vulnerable traits, the possession of which is not undesirable.

This is the idea expressed in John Quilter’s very thoughtful piece, and I take it that something like this is being expressed for the medical context in the article by Wendy Rogers and Mary Walker.

Actually there is a background fundamental question to all of this and it’s about whether certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. If we think there are such traits, this would inform the treatment vs enhancement question from the outset. It may be that we possess such traits and we should be concerned not to enhance ourselves to eliminate them. It may be, also, that we should not be jumping in to treatment occasioned by the slightest deviation from the path of a happy life.

We mention in the introduction the case of grief. Those who have experienced a period of grieving know that it can involve an extremely unhappy time, very disruptive and even destructive. Nevertheless there are strong arguments for thinking this is something that marks the value of the connections we had, and not something to be eliminated.

But let’s not be too glib about this. If there are such traits it does require a philosophical defence to state what they are and to understand the extent to which such (not undesirable) vulnerability should be retained. In the case of grief, this can tip over into a state of extraordinary dysfunction and pathology, in which case, a trip to one’s physician is obviously in order.

XS: How important do you think trust – which I take is archetypal kind of vulnerability in human life – is for a well-functioning healthcare system? 

Matthews: This is a very good question. Without trust the compliance costs of any human institution, where relationships are governed by rules, would be prohibitive. For a defining feature of trust is that I may rely on a trusted party without the need to monitor them constantly, or even at all. Trust is highly enabling for a well-functioning healthcare system then, just measured in the banal terms of cost as just stated.

But you’re right, if A trusts B, then A is made vulnerable to B in case B turns out to be unreliable or untrustworthy. The inference is then very clear: systems, including the healthcare system, conceptually depend on levels of vulnerability. The vulnerability goes both ways. Patients are just the obvious case, and not even the best system of informed consent can really compensate for the fact that the doctor-patient relation is one of imbalance: an epistemic imbalance and a power imbalance.

But as both Justin Oakley and Mayes et al argue, the medical fraternity, in various ways and in virtue of their positions of responsibility are vulnerable in so far as they must trust each other and the systems they operate within.

XS: Much of the role of palliative care involves helping ailing patients to come to terms with their vulnerability. Are there other areas of medicine where vulnerability is particularly important? 

Matthews: The most vulnerable patients are those whose (autonomy) competence is diminished. The limit case of this is a severely injured person who comes into a hospital unconscious and who cannot be identified. No one can speak on their behalf, and so initially healthcare workers must make, and take responsibility for, all decisions pertaining to their care.

Other groups include dementia patients, the very young, or those with a mental illness. Very depressed patients, for instance, are known to have highly limited capacities in the estimation of risk and benefit and what should be done to assist them.

Another vulnerable group is those with drug dependence issues. The United States is currently going through an opiates epidemic. In 2014, there were 47,000 overdose deaths from prescription and street opiates there. These patients are particularly vulnerable for two reasons. Often medical staff have little understanding of addiction and little sympathy for drug dependent persons who they blame. Secondly, addiction is a chronic condition, which means that over time the drug dependent person becomes resigned to their drug dependent status, and this leads to lost hope, and a sense of ineffectiveness.

Chronic conditions such as this are a great burden on healthcare systems and represent an important challenge to medical staff who may not view such people as the vulnerable types they really are.

XS: Australia has a relatively strong social security net. Is ‘vulnerability’ a justification for a universal healthcare system? 

Matthews: Good question again. The conception of a government-supported healthcare system as providing a safety net I think frames the idea of universal healthcare incorrectly. Such a conception runs the risk of making care available only to those who need the net – those vulnerable types who have fallen, and but for the net, would crash to the ground.

And this leaves open an argument that healthcare should be made available only for those whose vulnerability is unpredicted. Then we enter a range of familiar debates about whether, for instance, smokers or risk takers generally deserve the safety net – paid for by all – when other more responsible people are not smokers, risk takers etc. That is a dangerous debate, as we know, and only leads to adversaries digging themselves into positions that tend not to shift.

Now, having said that, I think there is wider philosophical conception of vulnerability – wider than the folk idea that excludes (say) smokers – that could be used to justify the establishment and maintenance of a universal healthcare system. Variations on this conception are outlined in the introduction to the special issue.

On this view, human vulnerability is fundamental, pervasive, shared and possessed by all, independently of perceived power imbalances. Of course there are special cases as well, and obviously some groups are more vulnerable than others, but on the wider conception, no one, as it were, escapes.

Under that view, we can run a line of argument which says that a universal healthcare system is rational because vulnerability is a universally held human trait. On this view the idea of a safety net is almost trivialised, and that is because the understanding is that a healthcare system is a rational response to recognising a fact about our natures, our natures as embodied, social, interdependent creatures.

XS: One theorist who wasn’t mentioned in your introduction to the issue was Alasdair MacIntyre. To what extent do you think MacIntyre’s writings on human dependency overlap with the ideas advanced in this issue of Theoretical Medicine? 

Matthews: It would take us beyond the scope of this interview to deal in depth with MacIntyre’s writings. I can at least say this much: In Dependent Rational Animals MacIntyre asserts that “an ethics independent of biology” is impossible. He argues that vulnerability and dependency are constants in the lives of human beings, regardless of what stage of life they are at. This idea is similar to what I said in answer to your first question.

Many philosophers claim that certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. MacIntyre is one such philosopher. According to MacIntyre, to develop our capacity as moral agents means to achieve a certain measure of independence, but this should not come at the expense of acknowledging our constant and continued dependence. In one sense, such an acknowledgement is constitutive of moral development. Insofar as dependency is very closely related to vulnerability, MacIntyre’s ideas overlap significantly with the themes of this journal edition.





This article is published by Xavier Symons and BioEdge 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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Hackers download OkCupid data without consent


Is your privacy safe on the internet? How do you know? Now that people store medical records in the cloud and record much of their lives on social media, privacy is essential.

But as the latest scandal shows, privacy is always at risk.

A group of Danish researchers from Aarhus University has just released a data set of 70,000 subscribers to the online dating site OkCupid. They obtained them by scraping (harvesting) the data of publicly available profiles. However, they did it without seeking permission from the website or asking for the consent of the subscribers.

According to Vox, the data, which was collected between November 2014 and March 2015, includes user names, ages, gender, religion, and personality traits, as well as answers to the highly personal questions the site asks to help match potential mates. The users come from all over the world.

The data was uploaded onto the Open Science Framework, a site which warehouses Big Data and makes it freely available to social science researchers.

Harvesting the personal details of subscribers violates a fundamental rule of social science research: people must give informed consent. But the lead researcher, a graduate student named Emil Kirkegaard, sneered at critics of his methodology.

Professional researchers were outraged. Oliver Keyes, a social computing researcher, wrote on his blog:

this is without a doubt one of the most grossly unprofessional, unethical and reprehensible data releases I have ever seen.

There are two reasons for that. The first is very simple; Kirkegaard never asked anyone. He didn't ask OKCupid, he didn't ask the users covered by the dataset - he simply said 'this is public so people should expect it's going to be released'.

This is bunkum. A fundamental underpinning of ethical and principled research - which is not just an ideal but a requirement in many nations and in many fields - is informed consent. The people you are studying or using as a source should know that you are doing so and why you are doing so.

Although no names are associated with the data, it has not been anonymized. It will be possible to identify the user from other information in the dataset.

The ethics of this escapade seem simple enough: it’s not ethical. Kierkegaard commented in an on-line journal:

Some may object to the ethics of gathering and releasing this data. However, all the data found in the dataset are or were already publicly available, so releasing this dataset merely presents it in a more useful form.

However, as Michael Zimmer points out in Wired, “The most important, and often least understood, concern is that even if someone knowingly shares a single piece of information, big data analysis can publicize and amplify it in a way the person never intended or agreed.”




MORE ON THESE TOPICS | informed consent, internet, privacy, research ethics

This article is published by Michael Cook and BioEdge 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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New stem cell research guidelines


In response to the rapid development of scientific research and mounting ethical concerns, The International Society for Stem Cell Research (ISSCR) has released updated guidelines for stem cell research and the development of new clinical therapies. 

The new guidelines deal with a number of issues unaddressed in previous ISSCR documents, including genetic experimentation on human embryos, embryo research oversight processes, and the use of “undue financial inducement” to entice women to donate their eggs for research pruposes.

The full ISSCR document can be found here, and summary here

“The field of stem cell research is growing at a rapid pace, with scientists and physicians developing new therapies that can help patients around the world who suffer from a wide variety of conditions,” said Sean J. Morrison, Ph.D., ISSCR president and director of the Children’s Medical Center Research Institute at UT Southwestern. “These guidelines are essential to protect the integrity of the research and to assure that stem cell treatments are safe and effective,” he said. 

Writing in Nature, a group of several international of bioethicists commended the ISSCR for the broad-reaching new guidelines.

“The ISSCR guidelines continue the tradition of scientists creating professional standards for the responsible conduct of research. They speak most directly to those engaged in stem-cell research but are also relevant to regulators, journal editors, press officers, physicians, funding bodies and patients. Such a global effort to establish research standards offers a model for other contentious research arenas — from artificial intelligence to climate engineering.” 



MORE ON THESE TOPICS | 14 day rule, CRISPR, stem cell research

This article is published by Xavier Symons and BioEdge 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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Medicine in India #2 – IVF for septuagenarians


A woman in India thought to be in her 70s has given birth to a baby boy, sparking outcry in the country and drawing international media attention. Daljinder Kaur gave birth to her son Arman Singh last month, after receiving treatment from a rogue fertility clinic in northern state of Haryana.

The woman’s son is healthy, and Daljinder says she is now a happy mother. “God heard our prayers. My life feels complete now,” she told The Guardian.

Yet most fertility specialists say it was unethical and reckless to provide the woman with IVF treatment. “It is outrageous,” Hrishikesh D. Pai, the former president of the Indian Society of Assisted Reproduction, told The Australian. “It is inappropriate to do it and it is not in the best interests of the parents or the unborn child to do it.”

Others see controversies like these as indicative of broader regulatory problems in the Indian medical system.

“The whole world is looking at India and saying we can’t regulate ourselves,” Dr Narendra Malhotra, head of the Indian Society for Assisted Reproduction, told the Guardian. “We put forward guidelines for ART (Assisted Reproductive Technology) clinics seven years ago. No government has taken them seriously, and a bill has been pending for seven years.”

There are also concerns that the child will be an orphan in just a few years. “Just because we can do something doesn’t mean we should do it, just to make world records”, Dr. Malhotra said. 




MORE ON THESE TOPICS | India, IVF, law

This article is published by Xavier Symons and BioEdge 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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Medicine in India #1 – limb surgery


Limb surgery is becoming an increasingly common procedure  among middle-class Indians looking to improve their future social prospects. The highly controversial operation is being sought out by both local and international clients, and is just one among the many cosmetic surgeries driving India’s US$3 billion medical tourism industry.

Height is considered attractive in India, and can have significant social ramifications for marriage and career prospects.

The procedure, both protracted and complex, involves doctors breaking the legs of patients and applying braces to the limbs that alters the length of the healing bone. According to Dr. Amir Sarin, a cosmetic surgeon based in Delhi, many junior specialists are performing the procedure with little or no prior experience.

“This is one of the most difficult cosmetic surgeries to perform, and people are doing it after just one or two months’ fellowship, following a doctor who is probably experimenting himself. There are no colleges, no proper training, nothing.”

The operation was first pioneered by a Polish man named Gavriil Ilizarov in the 1950s in a small town called Kurgan in Siberia. Ilizarov successfully performed limb surgery on accident victims and people born with one limb shorter than the other. The procedure has now become a procedure for social advancement. 




MORE ON THESE TOPICS | cosmetic surgery, human enhancement, India

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Does fear change behaviour?


In 2010 the New York City Department of Health launched a grisly 30-second TV ad (above) aimed at reducing the incidence of HIV amongst men who have sex with men. It showed angst-ridden young men reacting to the words osteoporosis, dementia, anal cancer.

The campaign was extremely controversial in the gay community. Some hated it: “it’s sadistic and bullying,” said UK-based journalist Gus Cairns. But gay rights activist Larry Kramer loved it: “these nyc department of health public service announcements are in fact not strong enough!”

These comments represent the two extremes of debate over fear-based public health campaigns. Bioethicists, whose work is supported by the pillar of autonomy, criticise them as stigmatising; public health ethicists, who often take a more utilitarian approach, believe that fear saves lives by motivating people to change their behaviour. From the 1950s to the 1970s, the anti-stigma crowd had had the upper hand. The consensus was that fear did not work.

In the 1980s the question became urgent with the HIV/AIDS epidemic. At first there was bitter resistance to using fear-based advertising to encourage young gays to use condoms. However, deliberately stigmatising warnings have been responsible for declines in the incidence of smoking since the mid-1950s.

An on-line first article in the Journal of Medical Ethics this week asked whether it is time to change tack and recognise that fear does “work”. Campaigns to decrease consumption of cigarettes and soft drinks by using cringe-inducing images appear to have had an impact. Why not HIV?   

“[a meta-analysis in 2015] concluded that fear appeals were effective at positively influencing attitudes, intentions and behaviour; there were very few circumstances under which they were not effective and there were no identifiable circumstances under which they backfired and led to undesirable outcomes…

[T]he long and sometimes bitter debate about the efficacy of fear-based campaigns may be drawing to a close. In thinking about fear-based campaigns in the future, it will be increasingly necessary to ask: not can we, but should we?...

To acknowledge that fear-based campaigns have a role to play is not the equivalent of endorsing efforts that seek to shatter a sense of self. To tug at the gut is not the equivalent of endorsing efforts that seek ‘a total destruction of the individual's status in organized society’.

What about the danger of stigma? The authors respond that fear-based campaigns do not necessarily stigmatise people. In fact they can increase their autonomy as long as they are not deceptive.

Unlike the now dominant perspective within bioethics, a central ethical claim for fear-based efforts was that despite virulent arguments to the contrary, they may in fact enhance autonomous choice… But the justification of appeals to fear and emotion should not be confused with the reliance on outright deception and exaggeration of the risks posed to public health.





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Pfizer to stop supplying drugs for executions


Pharmaceutical giant Pfizer has declared that it will not provide drugs to correctional institutions for executions. The announcement comes after its takeover last year of Hospira Inc, a company which manufactured several drugs which were being used in capital punishment.

A revised policy statement, posted on its website yesterday, says:

Pfizer makes its products to enhance and save the lives of the patients we serve. Consistent with these values, Pfizer strongly objects to the use of its products as lethal injections for capital punishment.

Pfizer’s new policy will not stop capital punishment in the US. But it will make it more difficult for states where it is legal to access the drugs. Furthermore, it is a public relations coup for anti-death penalty campaigners. Maya Foa, of Reprieve, a UK lobby group, told the media:

“Pfizer’s actions cement the pharmaceutical industry’s opposition to the misuse of medicines. Over twenty-five global pharmaceutical companies have taken action to prevent the misuse of their medicines in executions; with Pfizer’s announcement, this will mean that all FDA-approved manufacturers of all execution drugs have spoken out against the misuse of medicines in lethal injections and taken steps to prevent it.”

Pfizer’s previous policy statement (cached) dealt with the supply of drugs for both capital punishment and euthanasia. The revised policy mentions only the former. It is not clear whether it will continue to supply drugs for euthanasia in the Netherlands and Belgium.  




MORE ON THESE TOPICS | capital punishment

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Paris conference investigates CRISPR potential


CRISPR and other gene-editing technologies hold great promise for treating disease. However, they also provoke significant ethical concerns, especially about germline modification and the consequences of altering the genetic heritage of future generations.

On April 28 and 29, two conferences were held in Paris, one organised by European scientists and the other by Americans. They were attended by the world’s leading figures in stem cell research and ethics for a discussion of regulation, governance, and ethical issues surrounding human gene-editing research.

Caroline Simons, an Irish lawyer, reported on the proceedings in a guest post on The Niche, the blog of Paul Knoepfler’s stem cell lab. It’s a very useful summary of the status quo.

1.  Germline gene editing technologies are not ready for clinical application in humans.

2.  No country has regulated specifically for these technologies, but some consider that their regulations would encompass, or at least not prohibit, somatic gene editing.

3.  Most countries prohibit germline gene editing.

4.  There is no support for the clinical application of germline gene editing, but there is consensus that basic research should continue.

5.  There is consensus that research and, when safety and efficacy concerns are satisfied, that clinical trials of somatic gene editing should continue.

6.  There is no common understanding of ‘enhancement’ and no consensus that editing to achieve it should be permitted, even in somatic cells.

7.  The UK is the only country to permit mitochondrial replacement techniques (MRT), which will result in germline alteration. Neither the US nor China consider it prudent to approve MRT technology at this time.

8.  There is no consensus on the status of the human embryo (or even on what is an embryo), no consensus that embryos may be created for research or that they ought be available for research beyond the fourteenth day.

9.  The scientific evidence presented in the session which considered potential applications for germline editing did not demonstrate any ‘high unmet medical need’ for germline editing at this time. In fact, Dr. Clevers couldn’t think of any situation where using CRISPR/Cas9 on an embryo would be feasible.

10.There is consensus that public discussion of gene editing technology is urgently needed and that ‘broad, informed consent’ from the public is necessary before any clinical application of gene editing in humans.




MORE ON THESE TOPICS | CRISPR, stem cell research

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One of America’s finest novelists tackles life extension


“We are born without choosing to be. Should we have to die in the same manner? Isn’t it a human glory to refuse to accept a certain fate?” -- Zero K 

Immortality through cryonics is the central plot device in the latest novel by Don De Lillo, one of America’s best writers. Zero K takes the reader to a remote secret compound called “the Convergence” where bodies are frozen until a technology is developed to awaken them.

A billionaire takes his dying wife there to be frozen and has to decide whether he will join her, even though he is healthy, or whether he will live on, battling against existential doubt and a loveless life. The story is narrated by his son who is sceptical of the promises of the cult of frozen immortality and returns to New York in the second half of the novel.

The Convergence is a elaborate pastiche of the real-life  Alcor Life Extension Foundation, a facility in Scottsdale, Arizona, where 144 heads and bodies along with a few dozen pets are currently stored in liquid nitrogen awaiting resurrection.

The setting of his 16th novel gives De Lillo abundant opportunity for his signature reflections on life, death, commercialism, branding, marriage and the loneliness and alienation of post-modern living. As most reviewers have pointed out, the 79-year-old author is reflecting on his own mortality as well. 




MORE ON THESE TOPICS | Alcor, cryonics, death, immortality, novels

This article is published by Michael Cook and BioEdge 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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Calls to extend 14-day embryo rule


Policy analysts in the US and UK are calling for an augmentation of the decades-old 14-day embryo experimentation rule – a regulation that requires scientists to terminate any embryo in vitro before it reaches two weeks of development.

The calls for change have come in the wake of the publication of ground-breaking embryology research in Nature journals this week.

In two separate studies scientists have reported keeping embryos alive, healthy and developing up until the 14-day mark. In both studies the embryos grew autonomously and began processes that lead to organ development –a major improvement on any previous in vitro experiment.  

University of Manchester bioethicist John Harris argued in The Guardian that A switch to a 21-day deadline would allow scientists to better understand miscarriages and the possibilities of using stem cells to treat diseases:

“The overwhelming consensus of scientific opinion, as of this week, is that much of considerable scientific and therapeutic importance can be learned by extending the 14-day limit for a further week, to 21 days…”.

Harris suggested that the original rule was based on an arcane and outmoded value system. 

The Nuffield Council on Bioethics published a press release indicating that they are currently considering whether to advocate for a change in the law. The Council is set to hold a colloquium later this year bringing together “invited participants with a range of perspectives on embryo research in order to evaluate whether, after 25 years, there may be persuasive reasons to review this legal limit”.

A group of influential US ethicists writing in Nature this week called for both clarification and re-evaluation of existing regulations:

“Now that the culturing of human embryos beyond 14 days seems feasible, more clarity as to how the rule applies to different types of embryo research in different jurisdictions is crucial. Moreover, in light of the evolving science and its potential benefits, it is important that regulators and concerned citizens reflect on the nature of the restriction and re-evaluate its pros and cons.”

Reverend Tadeusz Pacholczyk of the National Catholic Bioethics Center offered an alternatively perspective and suggested that the 14-day-rule was flawed to begin with.  The arbitrary rule only paid “lip service to the moral status of the human embryo”, Pacholczyk said




MORE ON THESE TOPICS | 14 day rule, ectogenesis, embryo research

This article is published by Xavier Symons and BioEdge 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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Dutch euthanasia cases up by 4%


The number of euthanasia cases in the Netherlands continues to rise steadily. According to the latest statistics released by the government, in 2015 there were 147,010 deaths in the country. Of these 5,516 were reported to be euthanasia or assisted suicide (only 208 cases). This is rise of 4% over the figures for 2014.

Euthanasia is only available in the Netherlands if there is unbearable suffering. In most cases, the reported cause of suffering was cancer.

The most intriguing feature of the statistics was the steep rise in euthanasia for end-stage psychiatric disorders (56, up from 41 in 2014) and dementia (109, up from 81).

According to the Dutch protocols for euthanasia, each doctor is supposed to lodge a report with one of the five regional review committees. In 4 out of the 5,516 cases, the committees detected some irregularities, which will be investigated further.

One interesting feature of the statistics are 17 anonymized case studies (in Dutch) which are intended to demonstrate that doctors in the Netherlands take their due-diligence requirements very seriously. Verdict 2015-64, for instance, describes the case of a 20-30-year-old woman suffering from a post-traumatic stress disorder and refractory anorexia nervosa which began 15 years before after sexual abuse. The required two doctors concurred that she had made a voluntary and well-considered request, that there was no other reasonable solution, and that she was experiencing hopeless and unbearable suffering. 




MORE ON THESE TOPICS | euthanasia, Netherlands

This article is published by Michael Cook and BioEdge 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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Overdose deaths are boosting organ donation rates


The number of deaths from opioid overdoses has skyrocketed in the US, but public health executives see a big positive in the tragedy – increased organ donation.

Healthcare analysts have written extensively on the ramifications of the US  opioid abuse epidemic – an epidemic that, according to figures released by the Centers for National Disease Control and Prevention, has led to a 14% increase in deaths from opioid overdose in the space of a year (2013-2014).

The most recent topic of discussion has been the spike in organ donations from donors who have died from overdoses.

According to data gathered by the United Network for Organ Sharing (UNOS), the number of donors nationwide who died of overdoses rose by nearly 270 percent – from 230 to 848 – between 2006 and 2015. In New England alone, the number rose from eight to 54 – or by 575 percent – over the last five years, according to statistics compiled by the New England Organ Bank.

"It's a huge increase," says Alexandra K. Glazier, the New England Organ Bank's president and chief executive officer.

Almost 80,000 people in the US are actively awaiting organ donation, and it is estimated that around 22 people on the transplant waiting list die each day.

Some, however, are concerned about the quality of the tissue being donated by deceased addicts. "We've been able to place them in New England very successfully," said Helen M. Nelson, the New England Organ Bank's senior vice president of organ donation services. "That may not be true in other parts of the country."




MORE ON THESE TOPICS | opioids, organ transplants, transplant ethics

This article is published by Xavier Symons and BioEdge 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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Existential risk #2: gene editing a potential WMD?


 

In February this year, the US Director of Intelligence James R. Clapper named gene-editing technology as “a potential weapon of mass destruction”. Clapper told US Congress that rouge states might use gene-editing techniques to manufacture biological weapons. 

“In countries with different regulatory or ethical standards, it increases the risk of the creation of potentially harmful biological agents”.

The remarks sparked discussion among bioethicists about the possibility of misuse of gene-editing techniques. Here’s what a few had to say.

University of California San Francisco bioethics professor Barbara Koenig:

“Those individuals who don't follow the rules would essentially be ostracized. But I understand how you could be concerned that self-regulation is enough.”

Columbia University bioethicist Robert Klitzman:

“I think that this is a very powerful technology…I think as a result that there are things that need to be done that have not yet been talked about.”

“The infectious agent responsible for bubonic plague, if altered through Crispr, could potentially be used as a WMD. Currently, we have effective treatment against it. But if it were altered, it could potentially become resistant to these treatments and thus be deadly.”

Edinburgh University bioethicist Sarah Chan told The Guardian technology that could make diseases more infectious and dangerous has existed for decades, as have the questions around it.

“Some of the fears and concerns surrounding genome editing technology are, if not overblown, perhaps misdirected.”

Piers Millet, an expert on bioweapons at the Woodrow Wilson Center in Washington, D.C., said Clapper’s singling out of gene editing on the WMD list was “a surprise,” since making a bioweapon—say, an extra-virulent form of anthrax—still requires mastery of a “wide raft of technologies.”





This article is published by Xavier Symons and BioEdge 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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Existential risk #1: Mass extinction events


Eve of Destruction?

Human beings are more likely to die in a mass extinction event than a car crash, according to a new report released by the UK based Global Challenges Foundation.  The report – a document intended to provide international policy makers with an executive summary of contemporary existential threats for humanity – suggests that there is a 9.5% chance that a human extinction will occur in the next 100 years (the danger of dying in a car crash is below 2%).

The authors list among the most serious and likely threats over the next 5 years a ‘natural pandemic’, an ‘engineered pandemic’, and ‘nuclear war’.

While discussing the much-feared threat of global climate change, the report also places significance emphasis on catastrophic risks emerging from technology:

“Emerging technologies promise sig­nificant benefits, but a handful could also create unprecedented risks to civilization and the biosphere alike. Biotechnology could enable the creation of pathogens far more dam­aging than those found in nature, while in the longer run, artificial intelligence could cause massive disruption.”

The Global Catastrophic Risks 2016 report is a join project involving three centres focusing on the study of existential risk: The Global Challenges Foundation, The Global Priorities Project, and Oxford University’s Future of Humanity Institute.

“We don’t expect any of the events that we describe to happen in any 10-year period. They might—but, on balance, they probably won’t,” Sebastian Farquhar, the director of the Global Priorities Project, told The Atlantic. “But there’s lots of events that we think are unlikely that we still prepare for.”





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Australian govt report backs ban on domestic commercial surrogacy


A government report has backed calls for an international treaty on surrogacy and for uniform legislation within Australia banning commercial surrogacy.

A Senate committee tabled its conclusions this week. In a nutshell, it backs altruistic surrogacy, but not commercial surrogacy. In a society where marriage and the family are changing rapidly, with many children lacking genetic connections with parents, surrogacy can be a solution for infertile couples, it contends.

However, the report left a number of issues in the too-hard basket. The include changing birth certificates to include all people who could qualify as parents – genetic, gestational and intended and making use of commercial surrogates overseas illegal.

Research shows that about 250 children from commercial surrogacy arrangements are brought back to Australia every year. Australia is powerless to stop this, argues the committee. The best the government can do is to give advice about the dangers of offshore arrangements and the possibility of abusing the human rights of the women involved.

Everyone agrees that fundamental principle of surrogacy must be the “best interests of the child”. However, there is a stark division on what those are. Some people told the committee that surrogacy in any form could never be in the best interests of the child because it creates confusion about his or her identity and is inconsistent with the United Nations Convention of the Rights of the Child. Others declared that it could be consistent. The committee sat on the fence.

Another issue is reimbursement for “reasonable expenses” for altruistic surrogates. The committee backed “appropriate reimbursement”. 





This article is published by Michael Cook and BioEdge 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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Chinese policy on organ transplants is just smoke and mirrors, say critics


The issue of harvesting organs from political prisoners in China to supply the country’s more than 160 transplant centres is not just controversial, but explosive.

So it is a bit odd that an article in the Journal of Medical Ethics published online last year by two authors from Macau and one from Australia had to be amended extensively.

After the publication of “China to halt using executed prisoners’ organs for transplants: a step in the right direction in medical ethics”, what was described as “a new law” became a “regulation” and a “guideline”. Consent from “the prisoners themselves or their family members” became consent only from the prisoners. And a crucial reference changed from an official government document to a government press release.  

Was this due to carelessness, or inexperience, or, as a response in the JME suggests, “smoke and mirrors”? The bitterly critical article was written by six authors associated with Doctors Against Forced Organ Harvesting (DAFOH), a group which supports the Falun Gong, a persecuted movement in China. Thousands of its members are said to be political prisoners there.

The government has acknowledged (after years of denying it) that organs were being taken from executed prisoners. A recent DAFOH report makes a strong case that the mysterious gap between the number of executions in China and the number of transplanted organs was made up by harvesting the organs of Falun Gong members. However, the Chinese government is notoriously secretive and there is no smoking gun to prove the allegations.

The DAFOH authors of the JME article are calling for support from the international community:  

What is ethically disturbing is the almost complete silence on this issue. Clearly, if China indeed murders innocent citizens for their organs, it would seek to conceal the crime. But why does the international community, including transplant doctors, medical ethicists and journal editors, remain complicit in this silence? This may in part be due to obfuscation about the term ‘executed prisoners’, which is taken by many to mean prisoners executed after a judicial process. In reality, in China, ‘executed prisoner’ means the killing of a person under detention by the state, irrespective of his/her criminal status.




MORE ON THESE TOPICS | China, Falun Gong, organ donors, organ trafficking

This article is published by Michael Cook and BioEdge 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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Bold attempt to reverse brain death gets US approval


Despite some sceptics, an Indian company working with a US biotech company has received a green light from the US clinical trials authority to test a protocol for reversing brain death.

Dr Ira Pastor, the CEO of the American biologics company Bioquark, believes that this could be a breakthrough technology, “another step towards the eventual reversal of death in our lifetime”.

The Reanima project has received approval to experiment on 20 subjects diagnosed with brain death at Anupam Hospital in Rudrapur, a small city about 250 km east of New Delhi.

While it may seem implausible, Dr Pastor points out that some brain dead patients “can still circulate blood, digest food, excrete waste, balance hormones, grow, sexually mature, heal wounds, spike a fever, and gestate and deliver a baby”. He has studied the regenerative properties of amphibians and other animals and believes that it is possible to regenerate brain tissue “with the convergence of the disciplines of regenerative biology, cognitive neuroscience, and clinical resuscitation”.

In the experiment, peptides will be administered into the spinal cord daily via a pump, with stem cells given bi-weekly, over six weeks. "It is a long term vision of ours that a full recovery in such patients is a possibility,” says Dr Pastor.

Is ReAnima being over-ambitious in this proof-of-concept study? Dr Dean Burnett, a neuroscientist at the Cardiff University’s Centre for Medical Education, believes that it might be. He told the London Telegraph:

“While there have been numerous demonstrations in recent years that the human brain and nervous system may not be as fixed and irreparable as is typically assumed, the idea that brain death could be easily reversed seems very far-fetched, given our current abilities and understanding of neuroscience. Saving individual parts might be helpful but it's a long way from resurrecting a whole working brain, in a functional, undamaged state.”




MORE ON THESE TOPICS | brain death, stem cells

This article is published by Michael Cook and BioEdge 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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What the man in the street thinks about human enhancement


What does the American public think about human germline enhancement? A survey of 17 polls taken over the 30 years published in the New England Journal of Medicine suggests that Americans support gene therapy for patients with serious diseases, but they oppose it in embryos or germ cells. The authors conclude: “Of course, public opinion could change over time as discussions of these issues continue to evolve and as more is learned about the implications and safety of gene-editing technologies.”

However, Pete Shanks, at the Center for Genetics and Society, in California, reaches a different conclusion from much the same information. The latest polls show that more than 80% of people surveyed thought that babies should not be genetically modified for increased intelligence or sporting ability. “These are, or should be, devastating numbers to anyone who thinks that the public supports human heritable genetic modification,” he concludes. 




MORE ON THESE TOPICS | designer babies, human enhancement

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Dutch paediatricians seek child euthanasia


The Dutch Health Minister, Edith Schippers, has earmarked almost 400,000 Euros for a study of whether to expand eligibility for euthanasia to children between 1 and 12. At the moment, children under 1 may be killed with the consent of their parents following criteria set out in the Groningen Protocols. Children older than 12 are already eligible.

After neighbouring Belgium passed legislation in 2014 enabling child euthanasia, doctors and activists in the Netherlands are keen to catch up.

The Dutch Paediatric Association (NVK) kicked off a debate on the topic last year. It strongly supports a change. At the moment euthanasia of a child between 2 and 12 is only possible by invoking the doctrine of “force majeure” in the Dutch criminal code, which means that the doctor feels compelled to do it as an emergency measure. But this still leaves him open to prosecution. The NVK believes that age is an arbitrary criterion and that euthanasia should be available for anyone with mental competence. Some children, even if they are under and 12 and desperately ill, are astonishingly rational.

A roundtable discussion at the Dutch Parliament amongst experts in medical care for children in January showed that there is a range of opinions on the topic, although most of the participants were broadly in favour of a change. The Royal Dutch Medical Association (KNMG) is in favour of studying the issue further.

Not all organisations at the roundtable wanted to amend the law. A Christian group, the NPV, pointed out that “the suffering of the parents should not be a justification for a request for termination of life of the child”. Their position was that “A society that does not protect its children loses its dignity. Let us commit to good palliative care and guidance to children - and their parents - in the last phase of life”.

A spokeswoman for the Dutch Association of Educationalists (NRC), Dr Miriam Vos, raised questions about what “hopeless and unendurable suffering”, the main criteria for euthanasia in the Netherlands, means for children. “Children younger than 12 rarely or never speak in terms of hopeless and unbearable suffering. Their verbal and nonverbal expressions may suggest this, but this is always interpreted by their doctor, parents and other health care workers.” 




MORE ON THESE TOPICS | euthanasia for children, Netherlands

This article is published by Michael Cook and BioEdge 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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Shakespeare and bioethics


Shakespeare may appear to be unimportant and irrelevant in bioethics. Yet the latest editorial published in The Lancet suggests the Bard is more significant for the discipline than some may think. 

“Shakespeare has appeared in 1200 Lancet publications… A keen observer of people, events, and ideas, Shakespeare excelled in the ability to distil their essence into characters and situations that remain recognisable today. In such contexts, familiarity with the human experience overpowers the unfamiliarity of language, and invites audiences to interpret the situation based on personal experience: be that as politician, sociologist, or clinician.” 

Shakespeare, say the Lancet's editors, was a playwright with a profound grasp on human morality:

“At their heart, Shakespeare's plays and poems explore humanity. Tales told with empathy about the struggles of human nature and passions; how all can be lost by poor choices or calamitous circumstance or, sometimes, gained by fortuitous external intervention. Just like the tales at the heart of health care.”



MORE ON THESE TOPICS | ethics, medicine and the humanities

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UK judge sceptical of circumcision for boys


Boys should not be circumcised until they are old enough to choose for themselves, a British judge has suggested in ruling on custody of two sons of a Muslim man and his estranged wife.

Mrs Justice Roberts, of the Family Division, agreed with the British-born mother of the boys, aged 4 and 6. The Algerian-born husband argued that  "circumcision had both a religious and a social importance which overrode any slight risk which the procedure carried." He would feel devastated if his sons were not circumcised.  (The names of the people involved were not released.)

The judge’s reasoning echoes arguments made by some bioethicists that circumcision is an unjustifiable violation of a boy’s bodily integrity:

"First and foremost, this is a once and for all, irreversible procedure. There is no guarantee that these boys will wish to continue to observe the Muslim faith with the devotion demonstrated by their father although that may very well be their choice.

"They are still very young and there is no way of anticipating at this stage how the different influences in their respective parental homes will shape and guide their development over the coming years. There are risks, albeit small, associated with the surgery regardless of the expertise with which the operation is performed.

"There must be clear benefits which outweigh these risks which point towards circumcision at this point in time being in their best interests before I can sanction it as an appropriate course at this stage of their young lives."

The judge stated that she was not setting down a principle about whether Muslims should circumcise their children. 

"I am simply deferring that decision to the point where each of the boys themselves will make their individual choices once they have the maturity and insight to appreciate the consequences and longer term effects of the decisions which they reach.

"Part of that consideration will be any increase in the risks of surgery by the time they have reached puberty. I do not regard the delay between now and that point in time significantly to increase those risks. The safest point in time to have carried out the procedure has long since passed."




MORE ON THESE TOPICS | circumcision, UK

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Indigenous Canadians fear impending euthanasia law


Francois Paulette says that Canada's new euthanasia law is not part of indigenous culture.     

As southern Canada prepares to roll out euthanasia after last year’s Supreme Court decision, the Dene, an aboriginal group of First Nation people, are awaiting it with fear.

Francois Paulette, the chair of Yellowknife's Stanton Territorial Health Authority Elders' Advisory Council, told CBC news that euthanasia conflicts with Aboriginal culture. "We don't play God," he said. "God is responsible for bringing us into this world, and taking our life. It is pretty straightforward.

Mr Paulette is asking the federal government to consult with indigenous people in drafting the new legislation.

The president of the Indigenous Physicians Association, Dr Alika Lafontaine, agrees. "The worst thing we can do is start to implement a program that is designed in the city and just assume that is going to work in our Indigenous communities," he says.

He is concerned that lower standards of care will be offered to remote indigenous communities if euthanasia is requested. It is possible, for instance, that registered nurses, rather than doctors, will provide the service.

Dr Carrie Bourassa, an indigenous health studies professor at the First Nations University of Canada, says that the new policy could be overwhelming for struggling communities. "For some communities it may not even be possible. When we're trying to deal with suicide and multiple loss in communities, is this even a conversation that communities are going to want to have?"

Suicide in remote communities is a serious problem in Canada.

Earlier this month the Canadian parliament held an emergency debate on Aboriginal suicides after 11 people, nine of them minors, attempted suicide in one weekend in Attawapiskat, a remote community of 2,000 in northern Ontario. The community leaders unanimously declared a state of emergency. Of the four health care workers in the community, none is trained in mental health. “It’s shocking that conditions like this continue to exist in this day and age in Canada,” says Grand Chief Alvin Fiddler, of the Nishnawbe Aski Nation, which represents First Nations in northern Ontario. 

 





This article is published by Michael Cook and BioEdge 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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A pro-life case for altering the genome


Although many obstacles remain, genetic engineering is much closer to becoming a reality with the rapid development of CRISPR. On the horizon are both human enhancement and cures for genetic diseases. But one significant political obstacle is fear of altering the human genome. It is not just pro-life activists who object; a number of scientists also fret about the commercialisation of human life.

However, things could change. In the latest issue of The New Atlantis, Brendan Foht presents a “A Pro-Life Case for Therapeutic Gene Editing”. He acknowledges the risks of altering a person’s natural endowment, but points out that while most of the time somatic gene editing will be preferable to altering the genes of embryos, there will always be exceptions: 

most forms of Tay-Sachs disease, for instance, begin to manifest early in pregnancy and are generally fatal for the child before it reaches the age of five. In such cases, correcting mutations after a baby is born may not be an effective way to reverse developmental problems caused by the mutations. Editing the genes of embryos would presumably be more effective, though also more dangerous, than postnatal gene-editing, since it would affect a much greater proportion of the body’s cells and will do so from an earlier stage of development.

Some scientists contend that using pre-natal genetic diagnosis with IVF would be preferable to using gene therapy on an embryo. However, Foht points out that there are substantial ethical issues with this “conservative” approach:

preferring PGD over genetic therapy represents a troubling attitude toward people with disease and disability. In selecting embryos to destroy (or fetuses to abort), doctors and parents are making a judgment that the life of someone affected by a disease or disability is not worth living — implying that those individuals affected by the disease would have been better off if they had never been born.

To put it another way, the judgment implicit in using gene editing to modify a disease-causing gene is that it is better to live without that disease than to live with it; the judgment implicit in using prenatal abortion is that it is better to die than to live with the disease. When both are options, preferring selective destruction over gene editing amounts to a preference for killing over curing.

This is an approach which is sure to provoke intense controversy in the pro-life camp. Stay tuned. 




MORE ON THESE TOPICS | CRISPR, genetic engineering

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Kuwait to establish national DNA record


In a world first, the State of Kuwait will require all citizens and visitors to provide DNA samples to government authorities.

The new security measure, which was approved by the nation’s government in July 2015, mandates that all visitors must provide police with a DNA record (most likely in the form of a standard cheek swab) before they enter the country. 

Government officials say that the new requirement will be a very useful means of combatting crime, as it allows for the matching of DNA specimens from crime scenes with the DNA code of any member of the population.

“DNA tests have proven very effective over the past decade and have been used in solving many crimes by matching biological evidence collected from crime scenes with databases”, an anonymous official told the Kuwait Times.

Officials suggest that the samples will be stored securely and

The government intends to store the specimens of visitors, as well as that it will be hard for even lab staff to access sensitive identifying information about the source of the sample.

International NGO Human Rights Watch has stridently criticised the new legislation. In a statement released when the laws were first approved, Middle East director Sarah Leah Whitson said,

“Many measures could potentially be useful in protecting against terrorist attacks. I suppose videotaping every user of a public toilet could be useful too, but that kind of intrusion is hardly necessary or proportionate, and neither is compulsory DNA testing.”

Under the law, individuals who refuse to provide a sample could face up to 7 years in prison.




MORE ON THESE TOPICS | biolaw, DNA, Kuwait, privacy

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Sale of complementary medicines unethical: Australian doctors


Criticism is mounting in Australia about the sale of low-evidence complementary medicines in pharmacies.

An ABC radio report last month censured the Australian Pharmacy Guild for its lax regulation of the sale of dubious complementary or alterative treatments. Reporter Ann Arnold interviewed leading pharmacist Adam Phillips, who is indignant about the widespread sale of products like ‘Liver Detox’ and Vitamin B3 tablets that claim to ‘release energy from the blood’.

In March The Medical Journal of Australia published an opinion piece by academic physician Dr. Edzard Ernst, in which Ernst criticized the rebranding of ‘complementary medicine’ as integrative medicine’:

“It has been claimed that integrative medicine is merely a rebranding exercise for alternative medicine, and a critical assessment of the treatments that integrative clinics currently offer confirms this suspicion.”

Ernst slammed the field of integrative medicine, calling it both unscientific and unethical:

“Integrative medicine is an ill-conceived concept which turns out to be largely about the promotion and use of unproven or disproven therapies. It thus is in conflict with the principles of both evidence-based medicine and medical ethics.”

The MJA went on to publish a poll of readers in which 79% of respondents called the sale of low-evidence alternative medicines “unethical”.

In a scathing article, Chris Brooker – editor of the Australian Journal of Pharmacy Daily – suggested that the complementary and alternative medicines industry violated basic principles of commercial pharmaceutical ethics.

 





This article is published by Xavier Symons and BioEdge 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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Artificial concerns?


Earlier this year, the American Information Technology and Innovation Foundation (ITIF) awarded their facetious ‘annual Luddite award’ to a lose coalition of AI sceptics, including Tesla CEO Elon Musk and renown physicist Stephen Hawking. The ITIF labelled the likes of Musk and Hawking ‘alarmists’ engaged in and “feverish hand-wringing about a looming artificial intelligence apocalypse”.

Yet the sarcastic gesture did not go down well. This week Nature published a scathing critique of the ITIF’s ‘fanciful futurism’, defending the ‘legitimate concerns’ of Musk and Hawking.

“Machines and robots that outperform humans across the board could self-improve beyond our control — and their interests might not align with ours. This extreme scenario, which cannot be discounted, is what captures most popular attention. But it is misleading to dismiss all concerns as worried about this.”
“Few foresaw that the Internet and other technologies would open the way for mass, and often indiscriminate, surveillance by intelligence and law-enforcement agencies, threatening principles of privacy and the right to dissent. AI could make such surveillance more widespread and more powerful.”
“Many experts worry that AI and robots are now set to replace repetitive but skilled jobs…The spectre of permanent mass unemployment, and increased inequality that hits hardest along lines of class, race and gender, is perhaps all too real.”

Ironically, the risks of AI are already being felt indirectly as universities lose young talent to the corporate sector. 





This article is published by Xavier Symons and BioEdge 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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Why should we respect conscientious objectors?


A powerful debate over conscientious objection is brewing in Canada. The Canadian parliament is drafting a law to implement a Supreme Court order to allow assisted suicide and euthanasia. Some doctors fear that they will be forced to perform the procedures or refer patients to more compliant doctors.

Writing in the Canadian Family Physician, Dr Nancy Naylor, a general practitioner, declared that she had decided to retire:

"I refuse to let anyone or any organization dictate my moral code. For this reason I am not renewing my licence to practice medicine . I have practiced full scope family medicine , including palliative care for the past 37 years and solely palliative care for the past 3 years. I have no wish to stop. But I will not be told that I must go against my moral conscience to provide standard of care."

Appeals to conscience are emotionally powerful. But do doctors have a right to appeal to their “moral conscience” to refuse to carry out legal procedures?

Today one of Canada’s most influential bioethicists and a colleague present the case for ignoring conscience claims in the Journal of Medical Ethics. Professor Udo Schuklenk, who is also co-editor of the journal Bioethics, and Ricardo Smalling, both of Queen’s University in Ontario, contend that “Forcing patients to live by the conscientious objectors' values constitutes an unacceptable infringement on the rights of patients.”

In a nutshell their argument is that medical professionals have made a contract with society. In return for a lucrative monopoly on the provision of an essential service, patients have a right to demand that they provide socially acceptable and legal services. By withholding their services, they are exploiting the power differential between them and patients. They cite American bioethicist R. Alta Charo, who says:

“claiming an unfettered right to personal autonomy while holding monopolistic control over a public good constitutes an abuse of the public trust—all the worse if it is not in fact a personal act of conscience but, rather, an attempt at cultural conquest”.

In Schuklenk and Smalling’s view, conscientious objection, based as it is on indemonstrable premises, is arbitrary and fickle. “Today it might be abortion and assisted dying, tomorrow it might be the use of the tools of personalised medicine or something else altogether.”

There might be a psychological cost to doctors whose conscientious beliefs are not accommodated by the state, but denying services to patients in need of services like abortion or euthanasia is more costly still. If a doctor feels (like Dr Naylor) uncomfortable, he or she should leave the profession. Ultimately, what matters is what society has declared to be legal, not the inscrutabale dictates of an individual conscience. Quoting the great British 17th century philosopher Thomas Hobbes, Schuklenk and Smalling argue: “the law is the public conscience by which [a citizen] hath already undertaken to be guided”. If the law changes, consciences must change as well. Otherwise there would be anarchy.

This is a stimulating essay which is sure to be influential for the future of conscientious objection in Canada. 





This article is published by Michael Cook and BioEdge 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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Donor anonymity is dead


from the Australian documentary, Sperm Donors Anonymous   

Guaranteeing the anonymity of sperm and egg donors is a controversial topic. On the one hand children may want to connect with their biological parents; on the other, the parents may have agreed to donate only because the transaction was anonymous.

However, as three British academics point out in an article in the journal Human Reproduction, the walls of secrecy have already been breached and there is nothing to protect any more. The growing popularity of personal genetic testing means that it is becoming possible for children to track down their genetic parents without any assistance from the records of IVF clinics. There are already a number of websites which help people connect with half-siblings fathered by anonymous sperm donors. As the databanks grow, it will be possible to link them to the father as well.

“All parties concerned must be aware that, in 2016,donor anonymity does not exist,” write the authors.

“Whether they are donating in a country that uses anonymous donation or not, donors should be informed that their anonymity is not guaranteed. They may be traced if their DNA, or that of a relative, is added to a database. There will also need to be consideration of any children that a donor might have, as they might find out their parent was a donor from such publicly available information.

“Together, these concerns highlight the importance of a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and privacy needs of offspring and donors.”





This article is published by Michael Cook and BioEdge 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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Fallout from Chernobyl continues 30 years on


Does environmental ethics form part of bioethics? If yes, then surely one of the world’s worst environmental disasters – Chernobyl – is of grave significance.  

30 years ago this year, the Soviet Union scrambled to contain the fallout of a reactor meltdown in the town of Pripyat, the Ukraine. 31 people were killed directly by the incident; it is unclear how many have been affected by the radioactive waste released into the atmosphere.

Three decades on authorities are still working to stabilizing the collapsing reactor. It is unclear just how long it will take until the Chernobyl area can be reinhabited; most estimates are in the hundreds of years.

A recent study published in the journal Frontiers in Ecology and the Environment appears to indicate the evacuated region is not as toxic for animals as was previously thought.  The study, which attempted to correlate radiation levels with the movement of animal populations, found that despite the lingering impact of the nuclear disaster, "Radiation did not negatively affect occupancy probability for any species," and that "the current distribution of wildlife within the CEZ is unaffected by [cesium-137] contaminant densities."

Despite the note of optimism to the study, the 30-year anniversary has brought attention to the potential long term effects yet to be felt. According to the Canadian-based NGO The Chernobyl Foundation, “the overall effect on future generations is not clear yet, since only 10% of overall problems can be observed in the first generation. It is estimated that, by 2050, new debilitating health problems will appear that are linked to the Chernobyl nuclear disaster.”

Nuclear regulatory bodies need to integrate a ‘safety culture’ in their organisational structure and ethos, argues University of Southern California Engineering professor Najmedin Meshkati. In light of the relatively recent Fukushima Nuclear Disaster, it seems that such an approach has not yet been taken. 




MORE ON THESE TOPICS | environmental ethics

This article is published by Xavier Symons and BioEdge 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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Illegal organ trade burgeoning in Iraq


In the face of continuing economic hardship Iraqis have turned to the illegal organ trade.  

According to a BBC report, gangs in the country are offering up to $10,000 US for a kidney, and have been increasingly targeted the country's poor. Almost a quarter of the country’s population live in abject poverty – according to World Bank statistics – and some destitute families are actively seeking out organ traders.

"The phenomenon is so widespread that authorities are not capable of fighting it," said Firas al-Bayati, a human rights lawyer, told the BBC.

"I have personally dealt over the past three months with 12 people who were arrested for selling their kidneys. And poverty was the reason behind their acts," he said.

Under Iraqi law only relatives are allowed to donate organs their organs to one and other. The trafficking of organs is strictly prohibited, with penalties ranging from three years in prison to death.

In July last year the Iraqi English-language news service NIQASH published a feature on the organ trade in Iraqi Kurdistan, a semi-autonomous region of the country. Displaced persons have flooded into region since the beginning of the Syrian civil war, and opportunistic organ traffickers have been very active in the sprawling refugee camps. 

According to NIQASH, organ ‘donors’ typically receive around $4000 for a kidney; traffickers will on-sell the kidney in other regional centres for up to $20000.

The regional government has been slow to implement laws outlawing the trade.  




MORE ON THESE TOPICS | organ procurement, organ trafficking

This article is published by Xavier Symons and BioEdge 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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IVF experts divided over mosaic embryos


Debate is intensifying among fertility specialists about the use of mosaic embryos in IVF.  

Mosaic embryos – embryos that are characterized by irregular numbers or arrangements of chromosomes in some cells – have typically not been used by fertility specialists (at least in the US) due the likelihood that any resulting foetus will suffer from genetic disorders.

Yet some experts believe the embryos are safer than popular opinion suggests; others are going as far as to advocate the routine use of mosaic embryos in IVF clinics.

One reproductive medicine expert recently claimed that preimplantation genetic screening processes used to detect abnormal embryos are inaccurate and that many of what are known as ‘mosaic embryos’ are actually gametes that will lead to healthy babies.

Dr. Norbert Gleicher, the director of the Center for Human Reproduction in New York, recently tested PGS by tranferring seemingly abnormal embryos into women seeking IVF. Gleicher has reported four normal pregnancies since he began his test.

“I think the biological hypothesis that you can, from a single biopsy, determine whether an embryo is normal or chromosomally abnormal — that is flawed,” he recently told the New York Times.

Gleicher’s view is controversial, with many PGS specialists arguing that new diagnosis techniques allow for very low rates of false-negative readings.

Three researchers from the world’s largest genetics laboratory, Reprogenetics, recently published a paper in the journal Fertility and Sterility arguing against Gleicher’s view. The paper ostensibly shows clinical value of HR-NGS for detecting mosaicism and as a selection tool to assist in identifying embryos with the greatest likelihood of viability; the authors also claim to have established that mosaic embryos can be considered a distinct category in terms of viability.

“Previous embryo selection methods had limited possibility of detecting mosaic embryos”, said the lead author of the article, Santiago Munne. “Now…we can detect mosaic embryos, which miscarry more frequently and implant less frequently, allowing the most viable embryos to be prioritized for transfer”. 




MORE ON THESE TOPICS | clinical ethics, IVF

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Nascent concerns about womb transplants


Bioethicists have sounded a note of caution about womb transplants after a failed attempt at the procedure in a US fertility clinic.

In late March a participant of an American trial had to have her recently transplanted womb removed. Ironically, the reverse-transplantation was necessitated by a common uterine infection unrelated to the initial operation.

Still, Some have used the failed operation as an opportunity to question the merits of the research. Southampton Law School lecturer Natasha Hammond-Browning doubts that the procedure has a net benefit for the women involved:   

“…I do not deny that for women without wombs who desire a uterus transplant, and receive one as part of one of the clinical trials that are happening, may well argue that their quality of life has been improved through the ability to experience one or two pregnancies. However, I believe that we need to ask: at what cost?...”

Other academics have enumerated various potential negative consequences that the procedure could have, and some suggest that even the ostensible benefits of the transplant have been misconstrued. As early as 2011 a group of researchers from Australia’s Macquarie University, discussed ethical problems surrounding the practice, noting, for example, that the limited nerve connections between the uterus and the recipient’s body may in fact entail an absence of the typical positive feelings experienced by a woman during pregnancy. The authors of that study did, however, note a certain inconsistency that would result from deny womb transplants to infertile women:

“Where a woman does not have a functioning uterus, it is far from clear how we might legitimately encourage use of a surrogate (with all its attendant difficulties) but withhold the opportunity to employ an (in principle) established surgical technique – namely, organ transplantation – in order to allow her to achieve a pregnancy ‘of her own’.”

US Researchers remain positive about the uterine transplant trials, despite the setbacks already encountered. The surgeon who is leading trials at the Cleveland Clinic, Dr. Goran Klintmalm said he and his doctors had discussed their failed transplant with his team. “What they experienced is something that helps us to fine tune our protocol and approach, to hopefully avoid having the same situation,” Dr. Klintmalm said.




MORE ON THESE TOPICS |

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Horrific abuse case raises questions over international surrogacy


An Australian case of sexual exploitation of infants has raised questions about international surrogacy. An unnamed 49-year-old man in rural Victoria has pleaded guilty to abusing not only two young nieces, but twins whom he fathered with the help of a donated egg from a woman in Ukraine at an IVF clinic in Asia.

The case came to the attention of police when they were alerted to images which were circulating on the internet.

His abuse of his daughters began when they were 27 days old and continued for seven months. Amongst the 13,000 images and videos in his possession when he was arrested were 300 of his own daughters.

The man has been married for 26 years but his wife was unaware of his illegal activities. The court was told that he had asked his wife to have an abortion in the early 1990s and appeared to be uninterested in having children. However, after he began abusing his nieces in 2009, his interest revived. After natural conception and IVF failed, his wife suggested surrogacy. He agreed although his intention was to produce children whom he could abuse.

The twins are now in state care.

The House of Representatives Standing Committee on Social Policy and Legal Affairs is to report on the regulatory and legislative aspects of international and domestic surrogacy before June 30.

Another Australian surrogacy case about an “abandoned” Down syndrome baby which attracted international attention has been settled in a West Australian court. In 2014 it was alleged that David Farnell and his wife Wendy spurned Gammy, a Down syndrome baby, which a Thai surrogate mother had gestated for them, but did take home Pipah,  his a healthy twin. The ensuing outrage increased when it emerged that Mr Farnell was a convicted sex offender.

However, after a lengthy investigation, Stephen Thackray, chief judge of the West Australian Family Court,  has determined that the Farnells had tried to take Gammy home but that the Thai surrogate, Pattaramon Chanbua, had bonded with him and wanted to keep him. 

He also ruled that Mr Farnell’s past was behind him and that he could be a good father to Pipah and declared that the Farnells had "suffered great humiliation and enormous stress for things they did not do".

However Judge Thackray had some harsh words for the surrogacy industry:

“ … surrogate mothers are not baby-growing machines, or 'gestational carriers'. They are flesh and blood women who can develop bonds with their unborn children. The appalling outcome of Gammy and Pipah being separated has brought commercial surrogacy into the spotlight.

"Quite apart from the separation of the twins, this case serves to highlight the dilemmas that arise when the reproductive capacities of women are turned into saleable commodities, with all the usual fallout when contracts go wrong."





This article is published by Michael Cook and BioEdge 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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Where to publish your bioethics articles


Two Swedish bioethicists have compiled a list of the English-language bioethics journals which are “reputable, trustworthy and have real impact” – together with a companion list of journals by predatory publishers which sound reputable, but probably aren’t. It appears on The Ethics Blog, a publication at Uppsala University.

Here is the list of reputable journals from Stefan Eriksson, at Uppsala, and Gert Helgesson, at the Karolinska Institute. The number in parentheses is the journals’ five-year impact factor.

  • Accountability in Research
  • American Journal of Bioethics (4.0)
  • Bioethics (1.5)
  • Biology & Philosophy (1.2)
  • BMC Medical Ethics (1.7)
  • Cambridge Quarterly of Health Care Ethics
  • Clinical Ethics
  • Developing World Bioethics (1.7)
  • Ethics (1.8)
  • Ethics and Information Technology (1.1)
  • Hastings Center Report (1.4)
  • Health Care Analysis (1.2)
  • Journal of Academic Ethics
  • Journal of Agricultural & Environmental Ethics (1.1)
  • Journal of Clinical Ethics
  • Journal of Empirical Research on Human Research Ethics (1.4)
  • Journal of Law, Medicine and Ethics (1.1)
  • Journal of Medical Ethics (1.4)
  • Journal of Medicine & Philosophy
  • Kennedy Institute of Ethics Journal (1.1)
  • Medicine Health Care & Philosophy
  • Milbank Quarterly (6.3)
  • Neuroethics (1.2)
  • Nursing Ethics (1.6)
  • Public Health Ethics (1.1)
  • Research Ethics
  • Science & Engineering Ethics (1.1)
  • Science, Technology and Human Values (2.5)
  • Social Science and Medicine (3.5)
  • Theoretical Medicine and Bioethics

Eriksson and Helgesson admit that their list is far from complete. In the comments on their blog post, other bioethicists suggested the addition of the Journal of Bioethical Inquiry, the Indian Journal of Medical Ethics, and the International Journal of Feminist Approaches to Bioethics.

As the long list of where not to publish, consult their post!




MORE ON THESE TOPICS | bioethics journals, publication ethics

This article is published by Michael Cook and BioEdge 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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Summer school in bioethics


A Manhattan-based NGO, Global Bioethics Initiative (GBI), has organized two bioethics summer schools, one in New York City and one in Dubrovnik, Croatia, in July and August.

The program in NYC is open to everyone from senior high school students to professionals. The program in Dubrovnik is aimed especially at undergraduates and post-graduates planning to work in academia, biomedical and health-related industries.

The lectures and discussions deal with the ethics of contentious issues ranging from end-of-life care, to organ donation, to mental illness and addiction and to HIV surveillance.

Both programmes include a series of lectures and seminars by notable faculty, field trips, film screenings, evening events with guest speakers open to public and a mini conference prior to the graduation ceremony.

Partial scholarships for low-income country residents and Continuing Medical Educatiom credits are available.

Students can apply to intern with GBI this summer but also to attend the programs. For further information, contact Dr Ana Lita.

GBI is a not-for-profit international educational organization founded in 2011. GBI is associated with the United Nations Department of Information and  enjoys special consultative status with the United Nations Economic and Social Council.

It keeps the international community, policy decision-makers, the media, and the public informed about important bioethical issues through educational activities, like the summer school. Many of the issues addressed by GBI are relevant to the work of the United Nations, including hot-button topics like human organ trafficking, and the ethics of population ageing.




MORE ON THESE TOPICS | bioethics, bioethics education

This article is published by Michael Cook and BioEdge 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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Chinese scientists modify human embryos in second experiment


A year after the first genetically-engineered human embryos were created in China, a different Chinese team has repeated the experiment, with much the same results: failure.

Researchers from Guangzhou Medical University gathered 213 surplus IVF embryos which were not viable because they had an extra chromosome. Using the CRISPR–Cas9 technique, they spliced into the genome of 26 embryos a mutation that protects people against the HIV virus. After three days they destroyed the embryos.

The experiment was published in an obscure outlet, the Journal of Assisted Reproduction and Genetics.

The results were by no means spectacular. The technique only worked in 4 embryos. And the modification was not present in all of the chromosomes and in some cases, other mutations were introduced.

Harvard stem-cell scientist George Q. Daley told Nature, “This paper doesn’t look like it offers much more than anecdotal evidence that it works in human embryos, which we already knew.”

Some scientists were uneasy about the ethics of the experiment. Even the authors concluded that “We believe that any attempt to generate genetically modified humans through the modification of early embryos needs to be strictly prohibited until we can resolve both ethical and scientific issues.” One scientist asked why experiments like this were not being done on primates first. Another said that even though the ethics paperwork had been done, “Introducing [a gene] and trying repair, even in non-viable embryos, is just playing with human embryos.”

Dr Daley also questioned the need for the experiment: “the science is going forward before there’s been the general consensus after deliberation that such an approach is medically warranted."

However, Nature News says that scientists believe that similar research in going on in several labs in China.





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Gendercide becomes an issue in Canada


The problem of gendercide has spread from India to Canada, researchers claim in the Canadian Medical Association Journal (CMAJ). A statistical analysis of births in Ontario found that the male-to-female sex ratio at birth -- which ranges between 1.03 to 1.07 naturally -- is as high as 1.96 if an Indian-born woman already had two daughters.

The researchers believe that over the past 20 years, there are 4,472 “missing” girls in Canada as a result of a preference for males amongst Indian immigrants. This happens mostly when both parents were born in India.

Researchers looked at data on more than 1.2 million births in women with having a third child in Ontario between 1993 and 2012. Of these, 153,829 (12.6%) were immigrant women from Asia.

Among women born in India who already had two girls, the ratio of male to female babies for the third birth was almost double the average, with 196 boys born for every 100 girls. If an Indian-born mother with two daughters had had an abortion before the third child, the sex ratio increased to 326 boys for every 100 girls and to 409 boys if the mother had had multiple abortions.

If a woman had an abortion at or after 15 weeks, when ultrasound can determine sex of the fetus, the sex ratio rose further, to 663 boys for every 100 girls.

"Among some Indian immigrants, the practice of induced abortions is associated with subsequently having a boy, especially at the third birth and among women with two previous girls," says Dr Marcelo Urquia, St. Michael's Hospital, Toronto, Ontario.

Birth ratios fell within the natural range for Canadian-born women and immigrant women from most other countries.

Previous studies of male-female birth ratios have relied on indirect evidence, and most have not considered the sex of the existing siblings or the number of abortions as factors.

In a related commentary, Drs Abdool Yasseen and Thierry Lacaze-Masmonteil, from the Children's Hospital of Eastern Ontario, Ottawa, Ontario, write, "The real question is not whether the practice of prenatal sex selection exists -- it is clear from the results of this study and numerous others that it does -- but why this practice persists, particularly in a Canadian society that espouses sex equality."

One problem is that Canada has no law on abortion at all. Professional associations frown on the use of ultrasound to detect the sex of a foetus and sex-selective abortions, but they have no power to stop them.

Amrita Mishra, project director of the Indo-Canadian Women’s Association in Edmonton, told the Globe and Mail that “existing legal loopholes allow anyone to use abortion for infant sex selection. I see Canada as enabling as such practices. And I refuse to have this turn into an Indian issue that’s been imported like vegetables or fruit into Canada.”

She would like to see a law against sex-selective abortion. “When one says Indians or Chinese, Koreans or Philippines have brought this problem to a country, we really need to take a good solid look at ourselves and ask ourselves what are the laws in this country that allow this to happen?” she said.




MORE ON THESE TOPICS | Canada, gendercide, India, missing girls

This article is published by Michael Cook and BioEdge 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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‘Genetic sexual attraction’ could become issue for kids of sperm donors


The British press is a fathomless mine of lurid but thought-provoking, strange-but-true explorations of the dark side of the human condition. Last week's revelation was published in a magazine called The New Day -- a passionate incestuous romance between a 51-year-old British woman and her 32-year-old American son.

Kim West was studying in California when she had a child out of wedlock. She gave him up for adoption and turned to England. Nearly 30 years later she learned that her son Ben Ford wanted to contact her. When they met, they immediately felt an overwhelming sexual attraction. Ben ended up abandoning his wife and moving in with his mother. They live together and are considering having children.

Post-adoption romance is a poorly-understood but well-documented phenomenon. In 1980s an American adoption counsellor, Barbara Gonyo, coined the term “genetic sexual attraction”(GSA) for these passionate feelings. Two British psychologists interviewed several people in the grip of GSA who all described “a romantic ‘falling in love’, intense and explosive, sudden and almost irresistible”.

Since incest is not only taboo but illegal in most jurisdictions, people are reluctant to discuss it. However the psychologists estimated that such feeling are present about 50 percent of the time when siblings and parents are reunited. Their article was published 20 years ago in the British Journal of Medical Psychology (later renamed Psychology and Psychotherapy), so it is possible that the number of cases has increased.

In fact, as a sympathetic columnist for The (London) Telegraph pointed out, the use of anonymous sperm donation could cause a huge increase in the prevalence of GSA. Children can contact their biological parents as soon as they turn 18 in the UK, so numbers are bound to grow as “genetic orphans” seek out the parents they have never seen. She concluded that:

 She writes:

Perhaps one of the biggest causes for concern is egg and sperm donation. Over the last few decades, it has never been easier for organisations – and individuals - to dish out large quantities of eggs and sperm to different locations. The last Human Fertilisation & Embryology (HFEA) report shows that sperm donations, especially, have been rising since 2005 – with many coming from the US and Denmark.

This seed sprinkling will essentially mean lots of children go through life without ever knowing their biological father and/ or mother, and other important close relatives, in the time where the desensitisation effect should happen.

Should they never meet with their (unknown) biological family, then they will never put themselves at risk of GSA. But such reunions have become much easier – especially as new rules brought out by the HFEA mean that any child conceived on or after April 2005 can now seek information on their parents when they turn 16 years old. This will inevitably mean more children discovering their biological relatives in adulthood, with the potential for hundreds, if not thousands, of more GSA cases

Legal arguments are already being rolled out. In an article in the journal Criminal Law and Philosophy, an academic at Rutgers School of Law, Vera Bergelson, has argued that the traditional reasons for banning incest are over or under-inclusive, inconsistent or clearly inadequate. For instance, when pressed, opponents of incest argue that children are harmed. But she responds that science does not bear this out:

“ … it is far from clear that inbreeding presents a threat to society. The number of serious genetic disorders associated with inbreeding is quite limited. Moreover, some scientists believe that, in the long run, populations may suffer from the prevention of consanguineous marriages …”

In any case, a higher probability of genetic defects is hardly a reason to ban marriage. If that were the case, society would ban IVF, which has an elevated rate of birth defects. She concludes, as supporters of homosexuality did in the 1970s:

“the true reason behind the long history of the incest laws is the feeling of repulsion and disgust this tabooed practice tends to evoke in the majority of population. However, in the absence of wrongdoing, neither a historic taboo nor the sense of repulsion and disgust legitimizes criminalization of an act.”





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Sperm donor scandal rocks US


Parents of donor-conceived children are suing a US sperm bank after it was discovered that one of the bank’s donors was a convicted criminal and schizophrenic.

Georgia-based Xytex Corp, the company at the centre of the lawsuit, advertised donor 9623 as a dream biological father, boasting a high IQ and impressive professional accomplishments (including being a PhD candidate in neuroscience engineering). After the man’s sperm was used to produce 36 children, one customer who had used the sperm accidentally stumbled across donor 9623’s true identity.

According to the claimants, the man has been diagnosed with schizophrenia, narcissistic personality disorder and grandiose delusions. They also allege the 39-year-old from Georgia spent eight months in jail after a residential burglary in 2005 and graduated with a bachelor’s degree just last year, 20 years after enrolling.

The information “made my heart sink like a lead ball into my stomach,” said Angela Collins, a parent who had used the man’s sperm.

Collins, who is one of the claimants, wants sperm banks to better screen donors, including carrying out medical and criminal background checks. She also hopes to push Xytex to create a medical fund for children affected by Donor 9623, to be used for intervention and treatment should any of them show signs of mental illness at a later date.

In a public statement Xytex has denied any wrongdoing.

“In this case, the donor underwent a standard medical exam and provided extensive personal and health information,” wrote Xytex president Kevin  M. O’Brien. “He reported a good health history and stated in his application that he had no physical or medical impairments. This information was passed on to the couple, who were clearly informed the representations were reported by the donor and were not verified by Xytex.”




MORE ON THESE TOPICS | clinical ethics, donor anonymity, US

This article is published by Xavier Symons and BioEdge 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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Treatment disagreement gets ugly in Western Australia


The parents of a six-year-old West Australian boy have spoken of their distress after a Perth hospital obtained a court order to force chemotherapy on the child.

Angela Kiszko and Colin Strachan – the parents of Oshin Kiszko, who has been diagnosed with advanced brain cancer – believe that their son should not have to undergo chemotherapy, as it is not worth the suffering and risks, which can include long-term intellectual impairment. Instead they asked for palliative care.

Yet earlier this month, a West Australian Family Court ratified the decision of a Princess Margaret Hospital (PMH) ethics committee to enforce the treatment, despite Kiszko and Strachan’s refusal.

Doctors said that the child’s brain tumour was on the cusp of an "irretrievable progression", and that the PMH peadiatric oncology team needed to commence treatment immediately.

The ethics committee, though initially divided, decided that the 'burdens and benefits equation' clearly fell in favour of active treatment.
Ms Kiszko had requested that doctors take a palliative option with reduced chemotherapy, but this was rejected by doctors at PMH.

Australian Medical Association WA president Michael Gannon has defended the hospital, saying the oncology unit at PMH was an outstanding one in a global context and he said no doctor would move to see such a treatment enforced without significant consultation.

"This is rare, extremely unusual and would weigh heavily on the individual clinicians involved," he told a local radio station. "It is something they would almost certainly discuss with their colleagues."

 




MORE ON THESE TOPICS | Australia, clinical ethics, informed consent

This article is published by Xavier Symons and BioEdge 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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Genetic diagnosis should be a government priority: Savulescu


Julian Savulescu, together with Monash IVF stakeholder Kelton Tremellen, has called on the Australian government to subsidise preimplantation genetic diagnosis, arguing that genetic screening is in the interests both of children and of future generations. In an article that forms part of The Conversation’s series on ‘big ideas’ for the 2016 Australian federal election,  Savulescu and Tremellen list what they see as strong reasons to fund genetic testing for prospective IVF parents. 

Savulescu and Tremellen suggest that, insofar as we “count the value of the life of a child produced by IVF as a benefit”, it is very cost effective to screen children for congenital conditions like cystic fibrosis.

“While the Australian government does pick up the tab for the majority of IVF costs, it pays absolutely nothing towards the costs of genetic testing, which are borne by the prospective parents. This appears to be a strange position when one considers the costs associated with care for a child born with cystic fibrosis, estimated to be over A$30,000 a year.”

They also suggest that there are ‘impersonal reasons’ that count in favour of government subsidies for prenatal genetic diagnosis:

“…we also feel intuitively that a world without cystic fibrosis is a better world… Sometimes these reasons are called “impersonal reasons”, reasons that are unconnected to harm and benefit to persons… The implication of this for IVF and genetic selection is that we have some direct impersonal reasons to support these.” 

Savulescu and Tremellen conclude their article with suggestion that it would be in the government’s interest to support genetic testing for “non-disease traits”:

“These arguments suggest much more funding should be put into IVF and genetic selection to avoid serious disease. But they also extend to other non-disease traits. It is better if people have talents and gifts, are happy, co-operative, empathetic, altruistic and so on… Genetic selection should be supported to have children who will have better lives, not merely healthier lives. It ought to be a priority.”

The argument advanced in the article reflects Savulescu’s general bioethical theory of procreative beneficence – the view that parents have an ethical duty wherever possible to bring into existence healthy children.





This article is published by Xavier Symons and BioEdge 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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Should students learn about declining fertility?


Is this a straw in the wind? After decades of educating students in the fine art of suppressing their fertility, the British Fertility Society sponsored a seminar this week about the controversial notion of teaching high school students about preserving it.

This was a concern of the late Lisa Jardine, the former head of the Human Fertilisation & Embryology Authority, the UK’s fertility watchdog. She once said:

If one in seven of us in the modern world is going to have problems with infertility then instead of all the teaching at school being about how to stop getting pregnant someone had better start teaching about how you do get pregnant, because there are going to be a lot of extremely disappointed people out there.

At the moment, British schools are obliged to refer to Sex and Relationship Education Guidance, a Government document which has not been updated since its publication in 2000.

The only reference to fertility in the 2000 guidance is to “some medical uses of hormones, including the control and promotion of fertility”. The organisers of the seminar pointed out that the topic of fertility decline with age is “Conspicuous by its absence”.  

Mentioning the topic of declining fertility is surprisingly controversial -- partly because of political arguments over sex education in schools. But there are also different ideas about whether a policy priority of avoiding teenage pregnancy clashes with teaching students how to preserve their fertility.

As well, some experts feel that discussion of fertility might add to pressure on women to have children early in life. It might also serve the commercial interests of IVF clinics who are beginning to market egg freezing as a way to have a successful career and to postpone childbearing.

Adam Balen, chairman of the British Fertility Society, told the Daily Mail that sex-ed classes should include information on the best age to have a child. Many girls, he said, are unaware how quickly their fertility declines with age and they are dazzled by the babies of ageing celebrities who neglect to mention that they used IVF, donor eggs or surrogacy.

Norman Wells, of the Family Education Trust, told the newspaper: “So much sex education has placed such a strong emphasis on how to avoid pregnancy, that it has frequently presented a very negative image of childbearing … and some, to their cost, are leaving it too late.”




MORE ON THESE TOPICS | fertility, fertility education, IVF, UK

This article is published by Michael Cook and BioEdge 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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Former Australian PM Bob Hawke backs euthanasia


Former Australian Prime Minister Bob Hawke   

Former Australian Prime Minister Bob Hawke has emerged as a strong supporter of legalised euthanasia. In an interview on ABC Radio, he said that some people were dying in terrible pain and should be able to schedule their own deaths. In his judgement, it is an “inarguable case”:

“In my judgement, there's no moral or ethical grounds for the absurdity of having a position where a person is in terrible pain and for some quasi-religious or moral reason you're going to make them suffer and suffer and suffer.”

For Hawke, a Rhodes Scholar who became the longest-serving Labor PM since Federation in 1901, the prospect of “losing his marbles” is unbearable, although he says that he has always been in favour of euthanasia. He even backs euthanasia for teenagers. "A 15-year-old can be in a position where he's got very limited life expectancy and the only certainty is excruciating pain," he said. "The principle is generally valid, I believe."

Hawke claims that many politicians are too cowardly to speak in favour “assisted dying” even though some opinion polls show 60 to 70% of Australian are in favour of it.

Paul Russell, a well-known Australian anti-euthanasia campaigner, observed that “losing my marbles” is a kind of vilification of patients with dementia. “He is saying, in a shorthand way, that he doesn't want to be like them. It is a pejorative; an unwelcome slight that reinforces discrimination.”




MORE ON THESE TOPICS | assisted dying, Australia, euthanasia

This article is published by Michael Cook and BioEdge 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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Racism and bioethics


A new edition of the American Journal of Bioethics considers the role that bioethics can play in addressing racism in healthcare, education, and general society.

Contributors cover a broad range of topics, including justice and racism, the treatment of undocumented immigrants in the healthcare and education systems, ethics education in medical schools, and ‘intersectional’ approaches to addressing racial inequalities.

Loyola University bioethicist Kayhan Parsi argues in his guest editorial that bioethics should have as a predominant concern the elimination of structural racism in medical schools, healthcare organisations, and, indeed, the discipline itself:

“If we want to eliminate structural racism, we have to change the structures… leadership in bioethics should strive to be more diverse and inclusive. The American Society for Bioethics and Humanities has never had a president of color…we need to cultivate more leadership opportunities for people of color in the field of bioethics.”

In a commentary, Abbas Rattani notes that “The bioethics discipline lacks a firm presence in HBMSs [historically black medical schools]” in the US. Rattani argues for the establishment of bioethics programs in all of these schools.

Melissa Weddle of Oregon Health and Science University argues that bioethicists have a limited role and scope for addressing institutional injustice, and that a concerted social effort is needed to adequately deal with entrenched racism:

“Addressing the racial injustices of our society is a mission that belongs to educators, journalists, policymakers, legal professionals, spiritual leaders, legislators, funders of research, law enforcement workers, hospital administrators, public health professionals, and all who participate in provision of medical care. Racism permeates every level of our society, and significant societal change will require sustained efforts within many disciplines by those with diverse experience and training.”




MORE ON THESE TOPICS | bioethics, bioethics discourse, racism

This article is published by Xavier Symons and BioEdge 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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No monkey business: pig to baboon organ transplants increasingly successful


A team of researchers in the US have performed a series of remarkably successful interspecies organ transplants. Specifically, they transplanted genetically modified pigs hearts into baboons and kept the ‘graft organs’ alive for a median of 300 days.

The researchers, led by Muhammad M. Mohiuddin of the National Heart, Lung and Blood Institute (NHLBI) in Maryland, published a paper detailing their findings in Nature Communications this week.

Mohiuddin and his colleagues transplanted genetically modified ‘human-like’ pigs hearts into the baboons while administering a series of special drugs to prevent rejection. Importantly, the researchers didn’t remove the baboon’s own heart, but rather connected an additional heart to the circulatory system of the animals, allowing their own hearts to beat as normal.

With their targeted interventions, the researchers managed to keep the hearts (and the baboons) healthy for many months, and one survived for 945 days.

The researchers say that new-targeted interventions, such as the blocking of communication between immune cells and the administering of blood thinners, allowed for greatly increased organ survival.

"These hearts could have gone even longer, but we wanted to test to see if the animals had developed some kind of tolerance to the organs," Mohiuddin told science magazine The Verge.

Several research teams around the world are conducting similar research into xenotransplantation – the transplantation of tissue or organs from one species to another – in a bid to address the ubiquitous problem of organ shortages. 





This article is published by Xavier Symons and BioEdge 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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More changes to donor law considered in NSW


The State government New South Wales is considering tightening rules regulating embryo donation after a woman who received donor eggs allegedly lied to doctors and the embryo donor about the fate of her pregnancy.  

The donor recipient, who has remained unidentified by the media, received embryos from Mrs. Natalie Parker in late 2014. The woman and her partner agreed to stay in contact with Parker once the baby was born. Yet late last year the donor recepient contacted Parker over the phone saying that implantation had failed.

Parker was suspicious of the woman, and tracked her down via Facebook. She discovered that the woman had indeed given birth to a child, and the child looked strikingly like Parker’s own children. Parker feels certain that that the child is hers, though IVF Australia are still investigating the matter. "I feel taken advantage of, and incredibly sad”, Parker said.

NSW health minister Jillian Skinner said that authorities are considering whether they should further strengthen donor law in the state. "A case made public [on Sunday] raises issues which the NSW Ministry of Health will look into to determine if any further strengthening is required," Ms Skinner said. Late last month the State Government considered new legislation that will give all donor conceived children the opportunity to access limited identifying information about their fathers. The proposed bill was narrowly defeated. 




MORE ON THESE TOPICS | Australia, donor anonymity, embryo donation, law

This article is published by Xavier Symons and BioEdge 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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Absolute morality garners trust, says new study


In an innovative empirical study, researchers from Oxford and Cornell universities have found that people who hold to moral absolutes in certain ethical dilemmas are more trusted among their peers than those who engage in situational analyses. 

Jim A.C. Everett, Oxford PhD student and Fulbright Scholar at Harvard University, worked with Molly Crockett from Oxford and David Pizarro from Cornell University to test whether our default reliance on moral rules has an evolutionary basis. 

The researchers asked participants to consider several variations of moral dilemmas where one must decide whether or not to sacrifice an innocent person in order to save the lives of many others. 

They then asked each participant a question about the others who took place in the study: did they prefer as social partners those who took a rule-based approach, or those who made cost/benefit moral judgements.

“Across 9 experiments, with more than 2,400 participants, we found that people who took an absolute approach to the dilemmas (refusing to kill an innocent person, even when this maximized the greater good) were seen as more trustworthy than those who advocated a more flexible, consequentialist approach”, said senior author Dr. Molly Crockett.

When asked to entrust another person with a sum of money, participants handed over more money, and were more confident of getting it back, when dealing with someone who refused to sacrifice one to save many, the researchers found.

However, simply deciding whether or not to sacrifice an innocent person was not the only thing that mattered: how the choice was made was crucial. Someone who had decided to sacrifice one life to save five but had found that decision difficult was more trusted than someone who had found the decision easy.

The scenarios used by the researchers included the famous Trolley Problem, as well as a thought experiment known as ‘the soldier’s dilemma’.




MORE ON THESE TOPICS | ethics, moral psychology, trust, utilitarianism

This article is published by Xavier Symons and BioEdge 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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Testing anti-paedophilia drugs


How do you run an ethical randomised trial to stop paedophilia? This is the question that hovers over research into drugs which are intended to stop unwanted sexual impulses.

Swedish doctors at the Karolinska Institute are investigating the effectiveness of a prostate cancer drug called Firmagon, which blocks the production of testosterone in the testes. It is effectively a form of chemical castration.

Other drugs are already in use, but there is very little hard evidence of how well they work. One of the reasons for this is the legal and ethical issues surrounding paedophilia. Doctors are supposed to report patients if they discover that they have committed a criminal offence like downloading child pornography, so men are understandably reluctant to volunteer for trials. The ethics of giving some patients who are at risk of offending a placebo are also murky. One of the goals of the study is to clarify the ethics of the methodology, in view of the social importance of the topic.

Swedish regulators have approved a trial for Firmagon. Half of the participants will receive a placebo and the other half will receive the drug. They will be tested over three months for three markers of risk: high sexual arousal, self-regulation, and empathy. They hope to recruit 60 volunteers through Preventell, a Swedish website for men who are troubled by unwanted sexual impulses.  

A novel feature of the trial is that the Swedish scientists are raising money through a UK website for crowd-funding science, Walacea. (See promotional video above.) The principal investigator, Dr Christoffer Rahm, says he does not want to rely upon drug company funding. He hopes to raise  £38,000 ($53,000).

The researchers’ broader goal is achieving an understanding of the genetic, neurological, and hormonal markers of paedophilic behaviour. Dr Rahm says: "It's important we have evidence-based treatment. We need to shift the focus away from what to do when the damage is already done on to preventing the sexual abuse happening in the first place."





This article is published by Michael Cook and BioEdge 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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Can we slim down the welfare state without eugenics?


The restless rent-a-crowd of British university protesters has a new enemy: Adam Perkins, a lecturer in the neuroscience of personality at King’s College London, who is accused of being a eugenicist.

Dr Perkins published a book called The Welfare Trait in December which almost settled quietly into the obscurity of dusty academic controversy. However, someone discovered what a radical threat it posed to the welfare state and marshalled the troops. In February he had to cancel a talk at the London School of Economics because of threats to disrupt it. He has been reviled on a minor Twitter storm with tweets like “He's a bitter little man with a huge chip on his shoulder, here's hoping he continues to stay out of future gene pools.”

His offence? Espousing Malthusian ideas as a solution to the ailments of the welfare state in the UK.

Perkins’s central argument is that “the welfare state increases the number of children at risk of developing personality profiles that make them less likely to get a job … Individuals with aggressive, rule-breaking and antisocial personality characteristics are over-represented among welfare claimants.”

After crunching the numbers he claims that women on welfare have more children, leading to ever-increasing generations of people with “employment-resistant personalities”.

However, Perkins is an economist and he notes that people on welfare still act rationally. If welfare decreases, they respond with lower fertility. Studies have shown that “ claimants used less contraception when there were increases in the amount of benefits available and the number of children born to welfare claimants rose by 1% for every 3% rise in benefit generosity.”

Critics, especially disability groups, have accused Perkins of being a eugenicist who wants to “breed out” welfare claimants. He denies this, saying that offering economic incentives to decrease the number of welfare-dependent children is not the same as manipulating genetics. He summarises his policy as follows:

“ … instead of getting bogged down in arguments over whether the benefit cap should be £26,000 or £25,500 per year it is better to set the cap at whatever level causes the number of children born to welfare claimants to start falling. Once a downward trend has begun, then the benefit cap can be tweaked to continue that trend down to whatever level of reproduction is judged by the government to be appropriate for disadvantaged households. In this way, year by year, the number of children who suffer personality damage due to being born into disadvantaged households will gradually be reduced.”

Perkins finds some support for his views in biologist Richard Dawkins who wrote in The Selfish Gene that contraception was a necessary element of the welfare state: “otherwise the end result will be misery even greater than that which obtains in nature”. 




MORE ON THESE TOPICS | eugenics, nudging, welfare state

This article is published by Michael Cook and BioEdge 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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The very rich are different from you and me


Olga Mirimskaya  

“Let me tell you about the very rich,” wrote American novelist F. Scott Fitzgerald. “They are different from you and me. They possess and enjoy early, and it does something to them, makes them soft, where we are hard, cynical where we are trustful, in a way that, unless you were born rich, it is very difficult to understand.”

This is an educational tale about how much Russian oligarchs love their IVF children. Its lesson is that IVF creates bad problems which oodles of money make worse.

Olga Mirimskaya and Nikolai Smirnov were a happy newly-married couple in Moscow. But not a typical couple. Olga had recently divorced one of Russia’s richest men in a London court, to the delight of Britain's lurid tabloids. She is the chair of Russki Produkt, Russia’s largest domestic producer of grocery goods. Nikolai, a Stanford graduate, is the chair of Zolotaya Korona, a Russian answer to PayPal.

According to Pravda, “Like many other couples these days Olga and Nikolai decided to take advantage of modern medicine and engaged the services of an in vitro fertilization (IVF) clinic.”

Olga, who already had three children from her first marriage, was 50 and unable to conceive. The couple engaged a surrogate mother from Crimea, Svetlana Bezpyataya, a woman with one child of her own and an unemployed husband. She had been a surrogate several times before. The pregnancy went well and the baby was born on May 15 last year, but the marriage of the two tycoons did not. They split up and everything went south -- including Svetlana, who fled to Cyprus with Sofia, her husband and her other daughter. Nikolai apparently financed their stay there.

Svetlana ignored the contract and refused to hand over baby Sofia to Olga. On the baby's birth certificate Svetlana and her husband Andrey are listed as the biological parents. It is possible that he knew nothing about his wife's surrogacy contract and thought that the child was his. A legal tussle ensued. Things got very messy.

Pravda depicts Svetlana as a criminal. From Moscow she was charged with numerous counts of fraud and human trafficking and was placed on Interpol’s “most wanted” list. Olga’s lawyers beavered away. In late March the Supreme Court of Russia declared her the legitimate mother of Sofia (although biologically she is her grandmother).

Other media, less understanding of the inner suffering of oligarchs, paint a picture of the best justice money can buy. Under Russian law, the birth mother of a child is deemed the mother, regardless of a purported surrogacy contract. "This is the ridiculous legal practice of modern Russia, when a woman who was not even a donor of biological material, whose egg has not been used, all of a sudden the trial court declared her the mother,” said children's ombudsman Pavel Astakhov.

A fair bit of confusion surrounded the surrogacy contract, which apparently required some sort of endorsement from a doctor. His testimony would have been helpful during the court hearing, which ran from September 16 to 21. Sadly, on September 8, like other inconvenient persons of interest in modern Russia, he committed suicide in his office under mysterious circumstances. Of Nikolai the media has had nothing to say. 

And baby Sofia? She is still on the run with her birth mother. 

NB -- The exact facts about this story are difficult to obtain on the internet and articles in local newspapers are tainted by prejudice and misinformation. Comments would be welcome. 




MORE ON THESE TOPICS | IVF, Russia, surrogacy

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Ban on embryo research survives challenge in Italy


Italy’s Constitutional Court has reaffirmed the legitimacy of a ban on human embryo research. In a decision late last month the Court declared that Article 13 of Law 40, a 2004 law on assisted reproduction, was constitutional. 

The legislation was challenged by a couple who had created several embryos in an IVF clinic. They requested that the defective ones be made available for genetic research, although this obviously clashed with Law 40.

Geneticist Bruno Dallapiccola, of the Bambino Gesù Children’s Hospital, was scathing in his comments to the L’Avvenire newspaper:

“The embryo is not simply a mass of cells, but something more which deserves to be respected. The Constitutional Court’s ruling, by maintaining the ban on using frozen embryos for research, confirms this principle."

He also expressed scepticism about the usefulness of human embryonic stem cells, in the wake of recent developments in stem cell research:

"We have not achieved the results that many hoped. The idea that research on embryonic stem is helpful in treating serious diseases today is, in my opinion, only a slogan that is not reflected in reality. While adult stem cells have led to tangible results which are transferable to clinical work, and while induced pluripotent cells have led to the creation of experimental models of diseases, embryonic stem cells have led nowhere.”  




MORE ON THESE TOPICS | embryo research, Italy

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The company they keep


“Europe’s superlab”, a £700 million research institute, the Francis Crick Institute, opens this year. It is Europe’s largest biomedical research centre, a partnership between six of the UK’s best known scientific and academic organisations – the government funded Medical Research Council (MRC), Cancer Research UK (CRUK), the Wellcome Trust, UCL (University College London), Imperial College London and King’s College London.

It has been named after Sir Francis Crick, who shared the 1962 Nobel Prize for Physiology and Medicine with James Watson and Maurice Wilkins.

But in times when universities are being battered for naming building and institutes after colonialists and racists, why has the UK’s science establishment named its “altar to biomedical science” (in the words of The Guardian) after an outspoken eugenicist?

This is a question posed by Philippa Taylor in her blog on Christian Medical Comment.

Crick was so convinced of the power of genetics that he even questioned the equality of “Negros”. In February 1971 he wrote in a letter to members of the American National Academy of Sciences that:

“more than half the difference between the average I.Q. of American whites and Negroes is due to genetic reasons, and will not be eliminated by any foreseeable change in the environment. Moreover I think the social consequences of this are likely to be rather serious unless steps are taken to recognize the situation…”

In 1970 he told Dr Bernard Davis, of Harvard Medical School, that people who were “poorly genetically endowed” should be sterilised:

“…My other suggestion is in an attempt to solve the problem of irresponsible people and especially those who are poorly endowed genetically having large numbers of unnecessary children. Because of their irresponsibility, it seems to me that for them, sterilization is the only answer and I would do this by bribery. It would probably pay society to offer such individuals something like £l,000 down and a pension of £5 a week over the age of 60. As you probably know, the bribe in India is a transistor radio and apparently there are plenty of takers.”

The name is doubly unfortunate, she suggests, because the focus of the new Institute is precisely developing the biomedical tools which will make do-it-yourself eugenics possible. Some people might forgiven for being sceptical of oaths taken never to engage in eugenics.




MORE ON THESE TOPICS | eugenics, Francis Crick, UK

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Playing the bioethical Trump card


What do bioethicists think of Donald Trump?

Probably not much. Trump views on bioethical issues are either ill-defined or extreme: He flip-flopped on abortion this week, appearing to change position three times in the space of a day. And after the Brussell’s terrorist attacks he called for a liberalisation of US laws on torture of terrorist suspects.

Yet there’s perhaps more to the story than these off-the-cuff remarks. Leading US bioethicist and former presidential advisor Johnathan D. Moreno believes Trump implicitly represents a certain attractive moral conservativism; at least, a conservativism attractive to Republican voters.

In a recent article in the Huffington Post, Moreno discussed the evolution  of GOP rhetoric on bioethics in the past ten years. According to Moreno, many Trump supporters are protest voters reacting to the weakened social conservativism of the party. 

The GOP establishment made a decision following the 2012 elections to soft-pedal controversial social issues. As Moreno recounts,

“…after President Obama’s reelection the post-2012 Republican ‘autopsy’ report specified that ‘on messaging, we must change our tone - especially on certain social issues that are turning off young voters.’”

Moreno believes this turn away from social issues –including cloning and stem research – damaged the party’s prospects and alienated their conservative voter base. Trump, Moreno believes, represents a reaction to the soft approach to social and bioethical issues.

“both [Ted] Cruz’s appeal and Trump’s rise demonstrate that many conservative voters want their politicians to be seriously committed to moral values.

“What all this will finally mean for the party or for the American conservative movement no one can tell, but in the aftermath of the Trump cycle conservative elites would do well to revisit the role of bioethics in appealing to their most sympathetic voters.”

Interestingly, Princeton Professor Robert George, a member of George W. Bush’s President’s Council on Bioethics, has publicly chastised Trump for his “oafishness” and “demagoguery”. George co-signed a letter published in The National Review last month that labelled Trump “manifestly unfit to be president of the United States.” 




MORE ON THESE TOPICS | abortion, politics, politics and bioethics, US

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Everybody’s a winner when euthanasia combines with organ donation, say doctors


Several Dutch and Belgian doctors have proposed legal reforms to increase the popularity of combining euthanasia and organ donation in the Netherlands and Belgium.

Writing in the Journal of Medical Ethics, they report valuable unpublished information about the prevalence of the procedure. So far, it has been performed only about 40 times in the two countries. However, there is “a persisting discrepancy between the number of organ donors and the number of patients on the waiting lists for transplantation” – which euthanasia patients could help to balance.

The authors stress that euthanasia is not a cure-all for the organ shortage. Most euthanasia patients suffer from cancer, which is a contraindication for organ transplantation. However, 25 to 30% of them do not, so there is obviously a real possibility of expanding the supply.

Furthermore, the authors say, public perception of this formerly abhorrent practice is increasingly positive:

“transplant coordinators in Belgium and the Netherlands notice a contemporary trend towards an increasing willingness and motivation to undergo euthanasia and to subsequently donate organs as well, supported by the increasing number of publications in popular media on this topic.”

Ethically, the procedure is basically uncontroversial as long as the patient is not pressured to donate, they contend.

“In the context of organ donation after euthanasia, the right of self-determination is a paramount ethical and legal aspect. It is the patient's wish and right to die in a dignified way, and likewise his wish to donate his organs is expressed. Organ donation after euthanasia enables those who do not wish to remain alive to prolong the lives of those who do, and also—compared with ‘classical’ donation after circulatory death—allows many more people to fulfil their wish to donate organs after death.”

However, there are some legal hitches in both countries. In the Netherlands, unlike Belgium, euthanasia is regarded as an “unnatural death” which has to be reported to the public prosecutor. This could delay donations. If the law were changed to allow the cause of death to be reported as the underlying condition, the procedure would be more expeditious. And “In Belgium, the current policy of determination of death by three independent physicians could be abandoned, facilitating a more lean procedure with only one physician.”

Public perceptions need to be managed as well. At the moment, it is necessary to maintain a strict separation between the request for euthanasia and the need for the organ. Partly this is needed to ensure that the donor is not being pressured. But the public also needs to have confidence that physicians will give objective advice. 

Finally, there is the tradition of the dead donor rule “that donation should not cause or hasten death”. The authors imply that this could be scrapped for euthanasia volunteers:

“Since a patient undergoing euthanasia has chosen to die, it is worth arguing that the no-touch time (depending on the protocol) could be skipped, limiting the warm ischaemia time and contributing to the quality of the transplanted organs. It is even possible to extend this argument to a ‘heart-beating organ donation euthanasia’ where a patient is sedated, after which his organs are being removed, causing death.”

The article’s proposals were not received with great enthusiasm in the UK where there is a simmering debate on assisted dying. Tory MP Fiona Bruce told the Daily Mail: “The paper confirms the worst fears expressed by Parliament when the House of Commons conclusively voted to stop the legalisation of assisted suicide in this country. The possibility of euthanasia achieved through live organ donation, such as by removing a patient's beating heart, as posited in this paper is shocking and chilling.”

And Lord Carlile of Berriew, a Liberal Democrat peer who is a leading lawyer, said: “I have extreme concerns about the ghoulish nature of the combined euthanasia and organ donation systems in the Netherlands and Belgium. Both can result in unbearable and irresistible pressure on an individual to die, and on a doctor to encourage death.”




MORE ON THESE TOPICS | Belgium, euthanasia, Netherlands, organ donation

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That euthanasia stuff… does anyone remember what we decided?


Catherine Fonck (l) and Health Minister Maggie De Block in Parliament  

Despite – or perhaps because of – scathing criticism of their 2002 law by foreigners, Belgians approach legalised euthanasia with a certain nonchalance. “We’re in charge. We know what we’re doing. Life’s good. So get … um … lost!” seems to sum up the official approach.

However, a question posed by a member of Parliament, Dr Catherine Fonck, early last month, must have rattled that complacency.

Dr Fonck, a renal physician who was a minister in the government of Elio di Rupo, queried Health Minister Maggie De Block about why the full text of the country’s euthanasia law has never been published.

It turns out that the original text was amended in 2005 with the intention of controlling the lethal drugs used in euthanasia cases better. Both chambers of Parliament agreed that extensive information about the drugs and the pharmacist should be included in the official report submitted by the physician. The amendment received royal assent. It was therefore the law of Kingdom of Belgium.

But it was never published in the official gazette of December 13, 2005 -– so no one knew about it. Corrections were published in the gazette of September 25, 2006, but the amendment did not appear there, either. Dr Fonck raised the unsettling possibility that promulgation of the amendments had been sabotaged by an unknown individual.

“I find this completely surreal,” Fonck told the Minister. “Could you enlighten me on why this surreal situation, namely that legislation passed in both chambers, in committee and in a Plenary session of the House and Senate was - twice - not included in the Moniteur Belge [the official gazette]?” 

The terseness of the Minister’s reply suggests that she did not welcome the liberation of this fragment of law from the dungeons of oblivion. Understandable, perhaps, for it is not as though euthanasia is something important, like terrorism legislation, where a mistake means that innocent people die unnecessarily.

But she patiently ate her full meal of humble pie. “Ten years later, no one can explain what happened,” she told Dr Fonck. She agreed to correct the gazette.

Thanks to the bulletin of the European Institute of Bioethics




MORE ON THESE TOPICS | Belgium, euthanasia

This article is published by Michael Cook and BioEdge 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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Is disability a disadvantage or a mere difference?


 

Philosophical reflection on disability has a history, yet it is only in the past fifteen years that the contemporary Anglophone philosophical world has given it much attention. 

The renewed interest in the topic has culminated in a number of significant papers and books, among which is the 2015 book The Minority Body, by University of Virginia philosopher Elizabeth Barnes. Barnes argues for a social constructivist conception of disability. This means that the disadvantages that accompany disability are the result of social injustice, rather than physiological or psychological disadavantages.

Barnes suggests that, were the social injustices of the modern world to be remedied, the perceived disadavantages of disability would disappear. As she wrote in a 2014 essay, the overall disadvantage associated with disability would be removed if society were “fully accommodating of disabled people.”

Yet Barnes’s view is highly controversial, and has garnered widespread criticism. In an article published in the latest edition of the Journal Ethics, Guy Kahane and Julian Savulescu argue against Barnes’s “mere difference view”. According to Kahane and Savulescu, disabilities are objectively disadvantageous to an individual (they label their position the “detrimental difference view”). Kahane and Savulescu present a series of cases that seem to show that it would be impermissible to cause disability in an individual. And yet, it would seem that the mere difference view would permit  causing disability. Kahane and Savulescu argue that Barnes fails to adequately respond to this objection. For the two authors, this is sufficient reason to reject Barnes “mere difference” position.

Elsewhere, in a paper that appeared earlier this year as part of a Journal of Medical Ethics symposium on philosophy and disability, Stockholm University ethicist Greg Bognar provides an alternative critique of Barnes’s thesis.

Like Kahane and Savulescu, Bognar believes that disability is “no mere difference”. Bognar considers a series of arguments made by disability advocates in favor of the mere difference view. Some of the views he critiques include claim that disability is sufficiently similar to other mere differences that aren’t disadvantages, like race or gender; the claim that disability helps other people to cultivate other talents and aptitudes; and the view that disability is valuable because it is valued by those who are disabled.

Bognar suggests that none of these arguments sufficiently demonstrate that disability is not physiologically or psychologically disadvantageous for people. If he is right, then disability as such is detrimental and not just a trivial “difference”. Despite their arguments, Kahane, Savuesculu and Bognar go to some length to distinguish their criticisms from prejudice against disabled individuals. It is not a question of discrimination against a person, but rather a consideration of the moral/medical status of a condition. 




MORE ON THESE TOPICS | disability, discrimination, justice

This article is published by Xavier Symons and BioEdge 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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Are minors capable of informed consent?


In an article recently published (online-first) in the Journal of Medical Ethics, two UK-based doctors call for a sweeping review of adolescent consent protocols in British hospitals.

According to Dr Joe Brierley and Dr Victor Larcher of Great Ormond Street Hospital for Children, there is a disconnect between the complex case law on adolescent consent to treatment and the actual practice of considering the wishes of a minor.

“…Apparent distinctions between competence and capacity, consent and refusal may be difficult for clinicians to comprehend in their daily practice…The apparent divergence between the articulation of the common law and the daily experience of those providing healthcare to young people is troubling.”

Brierley and Larcher contrast a 2014 case that came before the High Court – An NHS Foundation Trust Hospital v P – with a famous case on adolescent consent from 1985 – Gillick v West Norfolk and Wisbech Area Health. In the former the Court ruled that a depressed yet certifiably capable 17-year-old could not refuse life-saving treatment deemed to be in her “best interest”.  This contrasts with Gillick, where a 16-year-old minor was deemed capable of consenting to the administering of contraceptives by doctors, even without parental consent.

Brierley and Larcher suggest there is a certain inconsistency in the way the law allows adults to make apparently irrational treatment decisions, yet limits what would appear to be more rational decisions by children:

“In adult medicine, sufficient importance is attached to the duty to respect the wishes of competent adults, even if they are held irrationally and run counter to an objective view of their welfare, that those choices will be honoured. Thus, an adult in P’s circumstances could have a refusal of rescue treatment honoured even if the consequences were an unpleasant death from liver failure. But unlike adults, in whom competence is presumed, children have to demonstrate capacity and achieve higher levels of competency than those required for adults. However, appeals to principles of fairness, justice and respect for persons would lead to the conclusion that young person who is competent to make a choice, whether voluntary informed consent or refusal, should have their choice honoured.”

The authors reference a highly influential 2003 paper by University of Manchester bioethicist John Harris, where Harris argues vigorously in favour of respect for adolescent autonomy. 




MORE ON THESE TOPICS | consent, informed consent, law, UK

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Doing the right thing by transgender kids is not easy


A US$5.7 million study of the long-term outcomes of medical treatment for transgender youth begins recruiting in May. But knotty ethical questions remain unanswered.

The study will be located at four academic medical centres with dedicated transgender youth clinics and will include 280 young people with gender dysphoria in two age groups.

Younger children in early puberty will receive hormone blockers, called GnRH agonists, to suspend the process of puberty - preventing the development of undesired secondary sex characteristics.

Older adolescents will begin use of masculinizing or feminizing cross-sex hormones that allow them to go through the “right” puberty - consistent with their gender of identification.

Feelings about the ethics of gender dysphoria run high, although little is really known about the condition. “People are making declarations of knowledge that are their belief systems, that aren’t also backed up by empirical research,” Jack Drescher, a psychiatrist at the William Alanson White Institute in New York City, told Nature. In this case, a number of ethicists regard hormone treatment itself as unethical, while those directing the study assume that it is.

Some studies say that 80% of children under with gender dysphoria abandon the idea by the time they enter puberty. However, it appears that children who identify as transgender in adolescence seldom change. Therefore, denying them the ability to transition is unethical, bioethicist Simona Giordano of the University of Manchester, UK, told Nature. “Not treating adolescents is not being neutral,” she says. “It means exposing children to a lot of harm.”

However controversial Giordano’s view is, even more controversial is how to treat younger children. The number in early childhood who identify as the opposite sex seems to be rising almost exponentially. The trend among doctors is to encourage them to live as if they were the opposite sex, an approach which is called “social transitioning”. Trans activists claim that any other approach is equivalent to the reviled “gay-conversion therapy”.

What Nature’s article did not cover is the ethical complications of treating children with powerful drugs for a condition which is poorly understood. The research project involves give 14-year-olds puberty blockers when the current position of the Endocrine Society is to wait until they are 16. 

“There are people within the transgender community who are pushing to do things even more quickly. And patients are requesting irreversible treatments at younger and younger ages,” says endocrinologist Courtney Finlayson. “We’re walking this line in between. This is the forefront of medicine, and we can’t go too fast.”

Even the lead doctor in the study, Rob Garofalo of Lurie Children’s Hospital, in Chicago, has some misgivings.

“The pushback in my own mind is my Hippocratic oath: ‘Do no harm.’ How can I know that I’m doing no harm in the absence of scientific data to support these interventions? I wish we had generations of outcomes research to fall back on, but right now we don’t. We ask these families questions that they can’t really know the answer to. No one can.”




MORE ON THESE TOPICS | informed consent, transgender children

This article is published by Michael Cook and BioEdge 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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The Netherlands is normalising euthanasia, says Dutch ethicist


A former member of a euthanasia review board in the Netherlands has written a stinging attack on the policy he once formed part of.

Dr Theo de Boer, professor of health care ethics at the Theological University in Kampen and associate professor of ethics at the Protestant Theological University in Groningen, speaks from a unique perspective. Not only was he involved in the adminstration of legalised euthanasia, he is also intimately familiar with arguments put forward by some Christian theologians to justify it.

Writing in the American Protestant magazine Christian Century this week, Dr de Boer says that  from 2005 to 2014, he reviewed nearly 4,000 cases of assisted dying as a member of one of the five Dutch regional committees. He thought it was a “robust and humane system” and defended it at ecumenical gatherings.

However, in 2007, he says that the pace of euthanasia began to accelerate, rising by 15 percent each year. As the numbers soared, the criteria expanded. Even children became eligible. The biggest change was the reason for requesting death. Originally defenders of assisted dying described heart-breaking stories of tormented patients  who just wanted to die peacefully. But this changed. Nowadays, many people simply want to take an early exit from loneliness or bereavement or meaninglessness.

Although some patients still request assisted dying out of fear of ineffective palliative care, an increasing number see euthanasia as the form of a good death after a trajectory of good palliative care. The unbearable suffering that they refer to increasingly consists of meaningless waiting rather than physical suffering. The “burning truck” example no longer applies to most cases. The issue now is autonomy—the patient’s right to a swift death, brought about by a doctor.

Dr de Boer’s words are sobering. They suggest that once euthanasia has become established it becomes a normal treatment.

With overall mortality numbers remaining level, this means that today one in 25 deaths in the Netherlands is the consequence of assisted dying. On top of these voluntary deaths there are about 300 nonvoluntary deaths (where the patient is not judged competent) annually. These are cases of illegal killing, extracted from anonymous surveys among physicians, and therefore almost impossible to prosecute. There are also a number of palliative sedation cases—the estimate is 17,000 cases yearly, or 12 percent of all deaths—some of which may involve shortening the life of a patient considerably. Furthermore, contrary to claims made by many, the Dutch law did not bring down the number of suicides; instead suicides went up by 35 percent over the past six years.

A shift has also taken place in the type of patients who seek assisted dying. Whereas in the first years the vast majority of patients—about 95 percent—were patients with a terminal disease who had their lives ended days or weeks before a natural death was expected, an increasing number of patients now seek assisted dying because of dementia, psychiatric illnesses, and accumulated age-related complaints. Terminal cancer now accounts for fewer than 75 percent of the cases. Many of the remaining 25 percent could have lived for months, years, or even decades.

In some reported cases, the suffering largely consists of being old, lonely, or bereaved. For a considerable number of Dutch citizens, euthanasia is fast becoming the preferred, if not the only acceptable, mode of dying for cancer patients. Although the law treats assisted dying as an exception, public opinion is beginning to interpret it as a right, with a corresponding duty for doctors to become involved in these deaths. A law now in draft form would oblige doctors who refuse to administer euthanasia to refer their patients to a willing colleague.

This is obligatory reading for anyone interested in the debate over euthanasia and assisted suicide.




MORE ON THESE TOPICS | euthanasia, Netherlands

This article is published by Michael Cook and BioEdge 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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LGBT rift over surrogacy?


It’s not just bio-conservatives who are troubled and puzzled by the growth of surrogate motherhood. Writing in the Huffington Post, Keston Ott-Dahl, the lesbian co-mother of a Down syndrome daughter, confesses that there is conflict in the LGBT community as well.

Keston’s partner Andrea was the surrogate mother (with her own eggs) of Delaney Skye.  The commissioning couple, also lesbians, were distraught when the foetus was diagnosed with Down syndrome and asked Andrea to abort her. The Ott-Dahl’s refused and have lived happily ever after – a journey they have chronicled in a blog, a book, and a video (above).

But there are problems. Clearly, with the legalisation of same-sex marriage, more gay and lesbian couples will want children. They need surrogacy. Banning it “would be devastating for the LGBT Community,” writes Keston.

However, many couples want a perfect baby and specify in contracts that defective babies should be aborted or that multiple foetuses should be “reduced”. But this is wrong, she says:

Intended parents need to be mindful ahead of time that there is no such thing as a designer baby, you get what you get — be open-minded (hearted) and grateful.

It is also wrong to force a surrogate mother into aborting a child:

In my opinion, “terminating” should always be at the discretion of the surrogate who is responsible for the growing inside of her. The right to choose doesn’t necessarily mean choosing to terminate. She can choose life as well and no one should attempt to take away her choice regardless of any business arrangement or biological link. It is her body.

Notwithstanding the boilerplate about women’s autonomy, for the Keston the most powerful argument seems to be love for a child obliterates fears of disability:

If intended parents are lucky, they may learn the lesson Delaney taught me; that “imperfect” child may open their hearts and pride to a love they would never have known and their lives may change for the better. I, for one cannot imagine a world without Delaney in it.





This article is published by Michael Cook and BioEdge 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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Nurses have a human right to be good Catholics


Florence Nightingale

In a provocative guest post on the Journal of Medical Ethics blog, a young Cambridge PhD candidate has reiterated his challenge the British medical establishment to change their restrictive stance on conscientious objection.

John Adenitire – who is currently completing a doctorate in law at the University of Cambridge – recently published a lengthy article in the JME criticizing the British Medical Association’s strict limits on conscientious objection. We reported on that recently.

Adenitire this week presented his argument more forcefully, writing that “nurses have a human right to be good Catholics”.

“I don’t think nurses should refuse to provide legal abortions because the Catholic Church tells them not to.  I am not a Catholic and I don’t think anyone should be a Catholic.  But what I think people should or should not be is irrelevant when it comes to the matter of what they have a legal right to be.  Whether I like it or not, nurses have a human right to be good Catholics.”

As Adenitire observes, the BMA restricts conscientious objection to three specific scenarios: “…conscientious objection should ordinarily be limited to those procedures where statute recognises their right (abortion and fertility treatment) and to withdrawing life-prolonging treatment from patients who lack capacity, where other doctors are in a position to take over the care.”

The language of the BMA policy statement would suggest that more remote instances of conscientious objection – such as where a nurse wishes not to take place in administrative or supervisory tasks associated with the provision of abortions – are impermissible. Yet Adenitire suggests that the UK Human Rights Act mandates that hospitals consider a medical professional’s right to object even where the perceived evil is remote. 

“Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.”  

Referring to a 2014 Supreme Court judgement, Adenitire comments:

“If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.”

 





This article is published by Xavier Symons and BioEdge 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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The unsettled status of conscientious objection in the UK


What are the rights of doctors who have a conscientious objection to certain procedures in the United Kingdom? The slightly confusing status quo is the subject of an article in the Journal of Medical Ethics by a Cambridge University academic, John Adenitire.

Dr Adenitire sketches a gradation of hostility towards conscientious objection.

1. At the very top there are Julian Savulescu and others who have argued that conscientious objection is “a door to a Pandora's box of idiosyncratic, bigoted, discriminatory medicine” and has little place in modern medical practice. This is not a widely shared view.

2. Then there is the British Medical Association (BMA), the profession’s “trade union”, which defends conscientious objection only in three specific scenarios. It “should ordinarily be limited to those procedures where statute recognises their right (abortion and fertility treatment) and to withdrawing life-prolonging treatment from patients who lack capacity, where other doctors are in a position to take over the care.”

3. And then there is the General Medical Council (GMC), the profession's regulator in the UK, which allows conscientious objection, albeit with a number of caveats. According to its 2013 policy statement, Personal beliefs and medical practice: “You may choose to opt out of providing a particular procedure because of your personal beliefs and values, as long as this does not result in direct or indirect discrimination against, or harassment of, individual patients or groups of patients. This means you must not refuse to treat a particular patient or group of patients because of your personal beliefs or views about them.‡ And you must not refuse to treat the health consequences of lifestyle choices to which you object because of your beliefs.”

4. Most accommodating of all is a ruling of the European Court of Human Rights (ECtHR) in the British case of Eweida in 2013. It applied Article 9 of the European Convention on Human Rights to several cases of discrimination in the UK. Article 9 guarantees “the right to freedom of thought, conscience and religion”, “subject only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others”.

It is Dr Adenitire’s contention that the Eweida ruling “effectively provides that medical professionals have the right to conscientiously object to providing certain healthcare services well beyond the scope endorsed by the BMA”.

This implies that “Given the unsettled nature of the law on the topic, [National Health Service] employers will have to proceed very cautiously as it will not always be clear whether denying a request will be considered lawful by a court. This entails that NHS bodies may be at risk of expensive legal challenges by medical professionals whose requests have been denied.”

Dr Adenitire therefore believes that the BMA’s policy should be changed to align more closely to the Eweida ruling.

However, the law is still unsettled and Dr Adenitire is not necessarily hostile to proposals for legalised assisted dying which are currently being debated in the UK. In an unpublished paper he goes on to argue that in certain circumstances doctors already have a “conscience-based right to provide assistance in dying”. 




MORE ON THESE TOPICS | conscience, conscientious objection, UK

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Euthanasia activist posthumously confesses to killing eight people


A now-deceased Canadian assisted dying activist has admitted to breaking Canadian law and killing eight people seeking euthanasia.

John Hofsess, 78, died in an assisted suicide clinic in Switzerland last month. The day after his death the Canadian magazine Toronto Life published a memoir he had written.  

In the article, Hofsess describes his subversive activity in Canada before euthanasia was legalised.

Hofsess set up an underground assisted suicide service that helped eight people to die – including renowned Canadian poet Al Purdy.

“I created an underground assisted death service that offered innovative non-medical ­methods of dying to [Right to Die Society of Canada] members …Following Jack Kevorkian’s example, we didn’t require clients to pay for our services…Between 1999 and 2001, we provided eight members of the Society with assisted deaths.”

Hofsess offers an extended account of the last days of Purdy, and discusses the different means by which he euthanized members of the Society.

Hofsess admitted that what he did was first-degree murder, which carries a mandatory life sentence, or assisted suicide, which carries a maximum 14-year sentence.

"Under current Canadian law, there's no apparent difference between me and killers such as Robert Pickton, Paul Bernardo and Clifford Olson”.

Jan Goddard, a well-known Canadian attorney specializing in elder law, described Hofsess’s story as an example of why euthanasia should be legal.

“It felt to me like it would have been so much better if he and his patients didn’t have to take on all that risk and fear.”

James Downar, a critical care and palliative care physician, was more circumspect:

“I think it’s always hard to condone somebody taking the lives of others, whatever the motivation. That’s a tough one to call. I won’t judge him, but at the same time it’s not the kind of thing I would encourage.” 




MORE ON THESE TOPICS | Canada, euthanasia, law

This article is published by Xavier Symons and BioEdge 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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Unilateral ‘do not resuscitate’ orders: what doctors think


In an article published online this week in the Journal of Medical Ethics, three US-based researchers discuss the results of a survey of neonatologists’ opinions regarding Do Not Attempt Resuscitation (DNAR) orders.

Unilateral DNAR decisions – decisions about resuscitation made by doctors without patent or surrogate consent – are highly controversial. Some see them as usurping patient autonomy.  

The authors of the article are sympathetic to the view that unilateral DNAR orders are in certain circumstances ethically permissible. What’s more, they found that most American pediatricians agree with them.

The authors emailed an anonymous survey to 3000 members of the American Society of Pediatrics Section of Perinatal Medicine, and had a response rate of 16% (490 respondents).

Of those who responded, 77% said it was ethically permissible to issue a unilateral DNAR order where doctors were treating an infant for whom survival was felt impossible. 61% said it was ethically permissible when survival was felt ‘unlikely’.

Interestingly, only 51% said they would enter the order if they found themselves in such a situation. The authors attempted to explain the discrepancy between judgements of ethical permissibility and personal practice.

“The discrepancy…should also be considered in light of the professional climate in American medicine. It has been reported that physicians in the USA commonly initiate and continue treatment until it is virtually certain that the patient will die, taking a ‘waiting for near certainty’ approach to end of life.”

The physicians had a similar attitude toward patients with a poor neurological prognosis. 57% said a unilateral DNAR would be permissible if no curative treatment was available.





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Donor anonymity legislation – a moral quagmire


Ethicists and doctors have slammed recently passed legislation in the Australian state of Victoria that will revoke the anonymity of sperm donors.

Under new regulations specified in the The Assisted Reproductive Treatment Amendment Act, children of sperm donors born before 1998 can access the information about their donor, including their name, date of birth or ethnic background, without the donor's consent.

No anonymous donations were permitted after the 1st of January 1998; before then donors could chose to donate on the condition that their information would be withheld from potential children.

Guido Pennings, professor of ethics and bioethics at Ghent University, decried the changes, calling them ‘disrespectful’, ‘unfair’ and ‘immoral’:

“Retrospective legislation on donor anonymity is morally wrong because…it implies that the donor is solely used as a means to serve someone else’s interests…in essence, it is a form of abuse of power by the government…the autonomy of donors and recipients is expressed in their informed consent. Unilateral changes afterwards violate the donors’ and the recipients’ autonomy. It makes their consent null and void.”

Tony Bartone, the Victorian president of the Australian Medical Association, said the new legislation undermines patient confidence in informed consent procedures:

“These patients underwent a medical procedure – donating sperm and eggs – and were given explicit and implicit assurances that their donations would be anonymous”.

Victorian health minister Jill Hennessy said information about identity could make a huge difference in the lives of donor-conceived Victorians.

"We believe all donor-conceived people should have the right to know about their genetic heritage, no matter when their donors donated. This information can make a huge difference to the lives of donor-conceived Victorians. If this information is available, it shouldn't be kept from them."




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Only in Sweden


Ernada Hidanovic and her son Armando, refugees in Sweden / Paul Madej      

The political and policing problems of allowing hundreds of thousands of refugees from Africa, the Middle East, and Afghanistan to plod into Western Europe tend to overshadow the difficulties of settling them into a new and alien society.

On the medical front countries in Western Europe are well prepared to cope with the massive influx, according to the World Health Organization. But inevitably there are exotic health issues. Female genital mutilation is one that has made headlines. One that hasn’t is “resignation syndrome” in refugee children and adolescents in Sweden.

This must be one of the most bizarre medical stories of the past decade, although it has received almost no publicity outside of Sweden. Hundreds of children and teenagers, aged 7 to 19, have been diagnosed with a mysterious ailment which leaves them unable to eat, speak and move. According to an article by Dr Karl Sallin and colleagues in Frontiers of Behavioural Neuroscience, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.

Unless they are given intensive nursing care, they will die.

And it happens only in Sweden.

In 2014 Swedish medical authorities started calling the phenomenon “resignation syndrome”, but this is just a label, not a solution. All of the affected children are members of ethnic minorities, many of them from former Soviet republics, with a disproportionate share being Uighurs. Many of them have been traumatised by experiencing domestic abuse, witnessing violence or being harassed. But only children from refugee families are affected; unaccompanied children are not.

None of the conventional explanations hold water. It could be a reaction to stress and trauma. It could be a projection of the anxieties of traumatised mothers. But there are 50 million traumatised refugees scattered all over the world. Why does “resignation syndrome” happen only in Sweden?

Dr Sallin proposes a two-fold diagnosis in his article. He argues that the affected children are actually suffering from an old and well-studied ailment: catatonia. They are conscious, but unable to move or respond, even to painful stimuli.

His second point is more controversial. He maintains that it is a kind of mass hysteria. Jean-Martin Charcot, a French neurologist in the late 19th century, was the first to characterise this phenomenon. The symptoms of his patients, mostly women, were recurring fits, often quite bizarre, which seemed to follow a standard path of growing severity.

After ruling out a physical cause, he concluded that the cause was psychological, and the ailment was transmitted by imitating other people’s hysterics. When the symptoms became “unfashionable”, the hysterical fits declined. Sallin believes that symptoms of hysteria evolve over time “through the continuous negotiation between physicians and patients immersed in cultural context”. This leads him to suggest that the refugee children are suffering from a mass psychogenic illness tailored for people in their community, just as in past outbreaks.

So this leads us to the bioethical angle to this strange phenomenon. Publicising the illness in the media may make the public more aware of a pressing public health issue, but it may be spreading it at the same time. And indeed it appears that there was a peak in cases of “resignation syndrome” when it was given extensive coverage in the media.

So Sallin concludes with a morose reflection upon the dilemma that doctors find themselves in. As physicians they are bound to tube-feed their catatonic patients, but caring for them may cause the syndrome to spread even further: “The appeal to culture-bound psychopathology raises an ethical dilemma … by offering treatment, to which there is no alternative, we are also, on another level, causing new cases.” 

Thanks to a post on the Ethics Blog of Pär Segerdahl, of the University of Uppsala




MORE ON THESE TOPICS | refugees, resignation syndrome, Sweden

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Legal abortion for men – not even in Sweden




Why limit abortion rights to women? A Swedish political group aligned with the country’s centrist party has proposed that men be given the right to ‘abort’ responsibility for their unborn children.

At a recent meeting, the LUF West – a regional branch of the youth wing of the centrist Liberal Party – backed a proposal to give men the opportunity to abdicate responsibility for a child up to the eighteenth week of a woman’s pregnancy.

The branch’s members believe that current legislation is vague and does not allow for the possibility of a man to jettison paternity early on if they so wish.

According the branch’s chairman, Marcus Nielsen, there are many men who are afraid to say they don’t want children or don’t want to play a part in the parenthood when their partner becomes pregnant.

“It is important that men are honest with their intentions”, Nielsen told the newspaper Aftonbladet. “There should be no sloppy legislation”.

Politicians from all sides of politics have criticized the group’s proposal.

Even Nilsen’s own party has rejected the proposal, saying the extant law is sufficient. "We think that the current legislation is good as it is," Eric Aronsson, press officer for the Liberals, told the website Nyheter24.

Carl B. Hamilton, a former Liberal Party politician, labeled the LUF members libertarian "idiots". 




MORE ON THESE TOPICS | abortion, discrimination, libertarianism, Sweden

This article is published by Xavier Symons and BioEdge 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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The forgotten history of Australian POWs, victims of Nazi doctors


German soldiers parachuting into the Battle of Crete   

It is small beer compared to other World War II atrocities but an historian has uncovered the story of five Australian POWs who were experimented on by an SS doctor.

About 3,000 Australians were amongst the 30,000 Allied troops captured after a massive airborne invasion by the Wehrmacht in May 1941. Recently records relating the fate of five of these men were discovered in Australian government archives by the historian of the Sydney Jewish Museum, Konrad Kwiet, and orthopaedic surgeon and medical historian George Weisz.

They were spotted in a prison camp by a bacteriologist working in the SS, Dr Friedrich Meythaler, who was investigating how humans become infected with hepatitis. None of the POWs gave their consent, of course. Mr Kwiet explained to the ABC:

“He selected five healthy Australian POWs. He examined them, took their blood, they were X-rayed, and then he injected them with the blood of hepatitis-infected German soldiers …

“He injected the infected blood into the Australian prisoners of war and then he again examined them, and what he found is that after a few days they responded with an enlargement of the liver, then an increase of temperature and other symptoms …

“He was engaged in experiments that the Nazi regime offered him, enhancing his career and moving into an area of research that he normally would not have achieved in a more civilised or democratic society.”

The soldiers were luckier than many victims of experimentation at the hands of Nazi doctors (some of who survived and moved to Australia, including twins under the care of the infamous Dr Josef Mengele). None of them died as a result of the treatment. One escaped to Egypt where he informed authorities; one was killed attempting to escape; and the three others were repatriated at the end of the war. But nothing was ever reported about their experiences. Now all of the soldiers have passed away.

Dr Meythaler’s research was published in a medical journal in 1942. As a member of the Nazi Party, he was banned from the medical profession for two years. But eventually, he became a highly-respected hepatitis expert, a director of medicine at Nuremburg Hospital and a professor at Erlangen University in Nuremberg. He was never prosecuted for his experiments. 




MORE ON THESE TOPICS | Australia, Nazi doctors, World War II

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Crispr will lead to designer babies, says geneticist


It’s worthwhile knowing what the scientist behind the deveopment of CRISPR, the revolutionary gene-editing technology, thinks about the ethics of using it.

In an interview with the Wall Street Journal, geneticist Jennifer Doudna, of the University of California Berkeley, believes that designer babies are only a decade away.

But for the moment, she believes that there should be a moratorium on editing the human genome, especially for traits like eye colour and IQ. “It should not proceed until we have a chance to understand better how the technology operates in those kinds of cells, as well as to provide time for societal consideration,” she says. But she does believe that CRISPR should be used to cure genetic diseases such as cystic fibrosis and muscular dystrophy. When the wrinkles are ironed out, CRISPR will become as common as IVF is nowadays.

“I wonder if over time people will get comfortable with the idea of human genome editing in embryos, at least if it were going to correct a mutation that would otherwise give rise to a debilitating lifetime disorder and maybe to even remove some kinds of debilitating bad diseases from the human genome completely.”

Tinkering with the genome is a momentous step, she acknowledges:

“It’s kind of a profound thing because if you really think about it; it really means altering human evolution on some level.”




MORE ON THESE TOPICS | CRISPR, genetic engineering

This article is published by Michael Cook and BioEdge 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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Brazilian bioethicist murdered


Although their field deals with immensely controversial life-and-death topics, most bioethicists do not die a violent death. 

However, prominent Brazilian bioethicist Antonio Moser, 75, was murdered earlier this month by two men on a motorcycle who shot him as he was driving his car in a suburb of Rio de Janeiro. Three days of official mourning in his honour have been declared by the mayor of Petropolis, where Moser lived and worked. The murderers escaped, but they may have been trying to steal his car.

Dr Moser was a Franciscan friar, a specialist in bioethics and head of Brazil’s biggest Catholic publishing house, Editorial Vozes. He was the author of 27 books and countless articles. As a moral theologian he published extensively on issues relating to bioethics, biotechnology and sexuality. He appeared regularly on a Catholic TV station and was on his way to the studio when he was killed. 




MORE ON THESE TOPICS | bioethicists, Brazil

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UK health service may harvest organs from babies with lethal defects


The UK’s National Health Service is to encourage pregnant women whose children have a fatal birth defect to bring them to term so that their organs can be harvested. This shocking story was reported by the Mail on Sunday, so it must be taken with a grain of salt. However, the newspaper quotes a number of doctors who support the idea  and cites plans being studied by the NHS.

The proposal was apparently mooted at the annual conference of the British Transplantation Society in Glasgow. 

Transplant surgeon Niaz Ahmad, of St James's University Hospital in Leeds, said: “We are looking at rolling it out as a viable source of organ transplantation nationally. A number of staff in the NHS are not aware that these organs can be used. They need to be aware. These can be transplanted, they work, and they work long-term.”

Apparently anencephalic babies are ideal for this purpose. These are children who are born without a brain, or with very little brain tissue. In today’s UK hospitals 230 are aborted annually and only 12 brought to term. However, more and more women are deciding not to abort the child, according to Dr Joe Brierley, a specialist at Great Ormond Street Hospital for Children in London. Women who have made this decision could be counselled that their child’s organs could benefit other patients. Near the time of birth the child would be pronounced brain-dead and its organs removed.

However, the newspaper reports that NHS Blood and Transplant said: “Under no circumstances would our staff or anybody else within the NHS pressure women to continue with a pregnancy solely for the possibility of organ donation.” 

Dr Brierley defended the plans vigorously:

Given that three people a day die waiting for an organ transplant, I welcome anything that improves the number of donors. Helping the families of those dying in intensive care to have the best information to make this decision is vital. With anencephaly, such discussions occur with a woman who has been told her pregnancy may result in stillbirth, or – if the baby is born alive – it will die as a newborn.

Whilst provision of such information is the cornerstone of good care, my view is that this should not be used to persuade a woman not to undergo termination. However, if a decision is made to continue the pregnancy for other reasons, then all palliative care options – including donation – ought to be discussed.

Bioethicist Dr Trevor Stammers told the Mail on Sunday that the suggestion was “abhorrent”. “It is a ghoulish suggestion that can only undermine public confidence in transplantation – one of the greatest medical advances of my lifetime. The concept reduces the baby to nothing more than a utilitarian means to an end – a collection of spare parts – rather than respecting life for its own sake.”




MORE ON THESE TOPICS | infant organ donation, transplant ethics

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More bracket creep in Belgian euthanasia


Three bills which could significantly expand the scope of euthanasia in Belgium have been proposed by Laurette Onkelinx, the leader of the Belgian Socialists and a former Deputy Prime Minister.

The first (PDF) would remove a five-year sunset clause for advance declaration of a patient’s willingness to accept euthanasia. This would mean that a document written 20 or 30 years before would be valid, no matter what a patient might have thought in recent times.

The second (PDF) would force doctors to give a rapid turn-around to requests for euthanasia. They would have to answer within seven days. If they refused, they would have to transfer the patient’s file to a doctor who would be willing to give a lethal injection. This threatens to remove physicians’ right to conscientious objection to euthanasia. It would also force doctors to treat a request as a matter of urgency, even though it might have come during a psychological crisis which would soon pass.

The third (PDF) would remove the right of institutions like hospitals or nursing homes to refuse to allow euthanasia on their premises. Ms Onkelinx insists that institutions have no right to conscientious objection; only doctors do. Her bill affirms a doctor’s right to follow his conscientious belief in the practice of euthanasia. In an explanatory memorandum, she invokes the principle that “a doctor can be neither forced to nor prevented from practicing euthanasia in legal conditions, wherever he might be.”

Although the proposals are radical, they have hardly been reported, even in the Belgian media. 




MORE ON THESE TOPICS | Belgium, euthanasia

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Controversial report to support legalisation of surrogacy in Europe


 

With a range of inconsistent statutes amongst member states, surrogacy is becoming a political football in Europe. Accusations of conflict of interest are being raised in the lead-up to a debate next week in a committee of the Parliamentary Assembly of the Council of Europe (PACE).

(Non-Europeans will have to concentrate very hard to track the Byzantine layers of bureaucratic acronyms. Sorry.)

On March 15, in Paris, the Social Affairs, Health and Sustainable Development Committee of PACE will consider a draft report on “human rights and ethical issues related to surrogacy” and probably vote on a draft resolution and recommendations.

The report has been written by a Belgian member of the European Parliament, Dr Petra de Sutter, who made fact-finding visits to the UK and the Ukraine last year. If the report is adopted, it will be debated by the 324-member plenary Assembly, which brings together parliamentarians from all 47 member States of the Council of Europe.

Dr de Sutter is a controversial choice as a rapporteur. She is a member of the Belgian Greens and head of the Department of Reproductive Medicine at Ghent University Hospital. She is a partner with an Indian surrogacy clinic, Seeds of Innocence. The clinic boasts that she had made its service “unique” in a highly competitive market for international patients.

She is also an openly transgender politician. Her autobiography (Over)leven: Mijn strijd als transvrouw, arts en politica ((Over) life: My struggle as a trans woman, doctor and politician) was only published a few weeks ago.

She was criticised in the French edition of the Huffington Post over an apparent conflict of interest over her association with Seeds of Innocence. In a strongly-worded response, she said that her colleagues had found that there was no conflict of interest. She rejected commercial surrogacy and even thought that it should be banned. However, Europe has to accept that surrogacy exists and that vulnerable children and mothers should be supported.

Dr de Sutter faces stiff opposition. A number of official EU documents  take a very dim view of surrogacy as a solution for infertility.

The Annual Report on Human Rights and Democracy in the World 2014 and the European Union’s policy on the matter (which was voted on in December 2015) stated that it: “Condemns the practice of surrogacy, which undermines the human dignity of the woman since her body and its reproductive functions are used as a commodity; considers that the practice of gestational surrogacy which involves reproductive exploitation and use of the human body for financial or other gain, in particular in the case of vulnerable women in developing countries, shall be prohibited and treated as a matter of urgency in human rights instruments.”





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Sharapova’s stumble revives doping debate


Maria Sharapova in the quarter-final of the Australian Open  

Top-ranked Russian tennis pro Maria Sharapova has admitted that she failed a drug test at the Australian Open after taking a banned substance called mildonium (mildronate). The consequences for her career and her income are likely to be substantial.

The incident has revived the debate about the wisdom of banning more and more performance-enhancing drugs. Sharapova had been taking the drug for years for a magnesium deficiency, irregular electrical activity in the heart, and a family history of diabetes. It was only placed on the list of forbidden substances in January. Her excuse is that she overlooked an emailed warning.

But whether or not she took it deliberately, haven’t we created a bureaucratic monster, asks Oxford bioethicist Julian Savulescu. He says that “a hidden clause in WADA’s [World Anti-Doping Agency’s] code is that something will be banned if it is both performance-enhancing and artificial, either in preparation or delivery.” But is there a reasonable basis for the distinction between “natural” and “artificial”? Savulescu says No.

But what moral difference does it make whether something is natural or artificial? Outside of drugs, sport is full of artificial enhancers: running shoes are artificial, aero helmets are artificial, chlorinated swimming pools are unnatural.

Instead of taking an intuitive approach of “knowing it when we see it”, we should ban substances or practices that are clearly or probably unsafe. And we should ban specific substances that corrupt the spirit of a particular sport – that is, that substantially reduce the human element, on a sport-by-sport basis.




MORE ON THESE TOPICS | drug doping, drugs in sport, sports

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Panel on infant lives meets in Washington


Professor G. Kevin Donovan of Georgetown University testifying before the Panel

The US Senate Select Investigative Panel on Infant Lives met for the first time last week, in a heated session that saw several experts testify against the procurement of fetal tissue for research. The panel was convened following the release of several videos apparently capturing Planned Parenthood employees negotiating the sale of tissue to private research firms.

Tensions on the panel were evident even before testimony began. Democrat and Republican representatives clashed over the subpoenaing of the names of researchers, technicians and medical personnel working in a select number of abortion clinics.

Referring to a shooting late last year at a clinic in Colorado, Democratic representative Jan Schakowsky said, “Linking individual’s names to an investigation that the Republicans describe as examining the ‘harvesting of baby body parts’ and the ‘horrific practices’ of abortion providers puts people in danger”. The chair of the committee, Republican Marsha Blackburn, replied that  the panel is “entitled to the information,” and a Democratic motion to quash the three subpoenas issued thus far was defeated on a party-line vote.

Bioethicists and scientists with a variety of perspectives appeared before the panel.

Professor G. Kevin Donovan of Georgetown’s Pellegrino Center for Clinical Bioethics said that said that tissue might be harvested from spontaneous miscarriages, thus avoiding the moral implications of using aborted fetuses. “If we cannot act with moral certainty regarding the appropriate respect and dignity of the fetus, we cannot morally justify its destruction. Alternatives clearly exist that are less controversial, and moral arguments exist that support our natural abhorrence at the trafficking of human fetal parts. Surely we can, and surely we must, find a better way.”

R. Alta Charo, of the University of Wisconsin, a well-known bioethicist, took a utilitarian line. Fetal tissue is necessary for life-saving research. Besides, she said, “Critics have overwhelmingly partaken of the vaccines and treatments derived from fetal tissue, and give no indication that they will foreswear further benefits. Fairness and reciprocity alone would suggest they should support the work, or at least, not thwart it.”

Lawrence Goldstein, a stell cell scientist from the University of California San Diego, was similarly pragmatic: “My message is simple,” he told the committee. “Fetal tissue and cells that would otherwise be discarded play a vital role in modern cutting edge medical research. These fetal tissues and cells cannot be replaced by embryonic stem cells, reprogrammed stem cells, or adult stem cells.”

One of the most interesting contributions came from Kathleen M. Schmainda, of the Medical College of Wisconsin, a radiologist. If fetal tissue were needed to cure a disease like Parkinson’s which afflicts a million Americans, three or four aborted babies might be needed for each patient.  “So, 4 million babies would need to be aborted to treat this one disease, not to mention the number needed to treat patients worldwide. Imagine the magnitude of the demand for fetuses to cure yet another disease like Alzheimer’s, which affects 44 million persons worldwide? Do we really want a world where the most vulnerable, those with no voice, are subject to the whims, desires and perceived needs of others? Clearly we will have created industrialized harvesting of preborn babies, a crime against the human race.”

The committee is expected to meet again in the coming months to hear from additional witnesses and enter newly obtained documents into the congressional record.

 

 





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First US womb transplant fails


The first womb transplant to take place in the US has failed – under dramatic circumstances. The recipient of the transplant, who was operated on last month, appeared smiling and healthy with doctors at a media conference on Monday. Yet just a day later there was a sudden complication that required specialists to remove the transplanted uterus.

The clinic released a statement on Wednesday about the emergency operation:

“There is a known risk in solid organ transplantation that the transplanted organ may have to be removed should a complication arise. The medical team took all necessary precautions and measures to ensure the safety of our patient.”

The woman, known only as Lindsay, said she was recovering well after the womb removal:

“…Unfortunately I did lose the uterus to complications. However, I am doing okay and appreciate all of your prayers and good thoughts.”

The Cleveland clinic is set to perform another nine uterus transplants as part of a pilot US study into the procedure. Two other hospitals, Texas’s Baylor University and Boston’s Brigham and women’s hospital, will also participate in the study. Doctors in Sweden have already performed a number of successful uterus transplants, resulting in the birth of five healthy babies





This article is published by Xavier Symons and BioEdge 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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Smoking – licence it or tax it?


In academic discourse the merits of regulating smoking are a forgone conclusion. The question under debate now is how to regulate. In a commentary published in the Journal of Medical Ethics this week, Sydney University Public Health academic Simon Chapman advocates a ‘smoking licence’ – a policy that he has promoted for some time.

Chapman argues that governments should implement a licensing system whereby all smokers have to pay a license fee and undertake a smoking ‘risk knowledge test’. There would be different grades of licence depending on the frequency with which one smoked each day, and the cost of the licence would increase with the grade. 

Chapman believes that his proposed model is a plausible model for implementation in countries with advanced anti-smoking campaigns: “The proposed smoker’s license described below merits serious consideration as a major platform in the tobacco control endgame now being considered in nations with advanced records of reducing smoking” he wrote in a highly cited 2012 article.

In his JME commentary Chapman presents his position as a ‘milder’ version of the prohibitively expensive licence proposed by Daniel Halliday, a philosopher at the University of Melbourne. Halliday’s proposed licence is indexed to the current excise tax on individual cigarettes in Australia –would be cost approximately A$3879 for a 20-cigarette-pack-a-day smoker. Chapman suggests Halliday’s tax will not “withstand a moment’s scrutiny from governments” due to the “fatal role of the ‘severe’ cost of the licence he proposes.”

Ironically the JME published an article last year advocating a much more severe policy than Halliday’s. Kalle Grill (University of Umea, in Sweden,) and Kristin Voight (McGill) argued for a total ban on smoking.




MORE ON THESE TOPICS | law, paternalism, public health, smoking

This article is published by Xavier Symons and BioEdge 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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David Bowie and palliative care


David Bowie’s impact on British society and culture was profound – so much so that a British doctor has mixed Bowie nostalgia with a reflection on the importance of palliative care. Dr. Mark Taubert, a palliative care specialist from Velindre NHS Trust in Cardiff, published an open letter in the BMJ ‘thanking’ Bowie for opening up a dialogue on palliation.

“Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” Taubert writes.

Taubert recounts the last days of David Bowie – admittedly with some poetic licence – and describes how palliation would have helped him. Taubert says he has recently used Bowie’s example as a means to persuade patients unsure about palliative care. Patients are reluctant to talk about death, Taubert suggests, and there is usually a need for doctors and nurses to establish a rapport with patients before they will discuss end of life treatment.  




MORE ON THESE TOPICS | cultural bioethics, palliative care, UK

This article is published by Xavier Symons and BioEdge 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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Bioethics and natural law: an interview with John Keown


Bioethics discourse is often divided into two broad categories: utilitarian perspectives and so-called deontological or Kantian approaches to ethics. An alternative viewpoint that receives far less attention is a natural law perspective on ethics and medicine. The natural law approach emphasizes interests or ends common to all members of humanity, and offers a teleological account of morality and human flourishing.

Professor John Keown of Georgetown University’s Kennedy Institute for Ethics recently co-authored a book on natural law with the late Georgetown Professor Alfonso Gómez-Lobo. The book is entitled Bioethics and the Human Goods: An Introduction to Natural Law Bioethics. The Deputy Editor of BioEdge, Xavier Symons, interviewed Professor Keown about his latest work. 

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Xavier SymonsWhat led you to write Bioethics and the Human Goods: An Introduction to Natural Law Bioethics?

John Keown: The book was largely written by my distinguished colleague and friend, the late Professor Alfonso Gómez-Lobo, who held the Ryan Chair in Metaphysics and Moral Philosophy at Georgetown. Before his untimely death at the end of 2011, he had submitted a manuscript to Georgetown University Press. With the kind permission of his widow, and with the approval of the Press, I completed the project, incorporating amendments that he had indicated, in his comments on the referees’ reports, that he wanted to make, and some amendments that I thought appropriate. About a third of the book is material I added to his original manuscript. I thought it important, given the regrettable dearth of introductory books on bioethics from a natural law perspective, that his manuscript should be enlarged, updated and completed

What contribution do you think natural law can make to the field of bioethics?

Natural law has made, and has the potential to make in future, a signal contribution to the ethics of healthcare and to bioethics more broadly conceptualised.  Natural law theory could be described as the most enduring and important moral tradition in Western thought, and it has had a profound influence on Western law, professional medical ethics, and culture.

Many laws and codes of ethics are grounded in the natural law articulation of certain fundamental moral principles that should always be respected, regardless of the consequences. For example, in relation to euthanasia, the prohibition on intentionally killing patients, which is still reflected in the law of the vast majority of jurisdictions, and in the ethics of the World Medical Association, is grounded on one such principle: the principle that it is always wrong intentionally to kill a person, even at that person’s request. 

Unlike other approaches to bioethics, most notably utilitarianism, natural law theory can offer a coherent account of the intrinsic wrongness of treating patients in certain ways, such as intentionally killing them, lying to them, or exploiting them, however beneficial it might be to others or to society to do so.

Moreover, although utilitarianism and ‘principlism’, in their various forms, are undoubtedly dominant in bioethics education today, it is important for students to realise that there is an alternative ethical tradition, one which makes sense of much of contemporary law and professional ethics, and which offers a radically different approach to bioethical reflection. Indeed, it seems to me that no student can understand bioethics (or, indeed, biomedical law) properly without at least a basic grasp of natural law theory. Without such a grasp, they have at best a partial understanding of the field. I fear that the many students of bioethics who are unfamiliar with the natural law tradition do not even know what they do not know.

Unfortunately, although the literature on bioethics is vast, that literature largely either ignores natural law theory, mentions it only in passing, or misunderstands it. There is, therefore, an important and urgent need for this book, and more books like it.  

I have lost count of the number of times I have been asked ‘Could your recommend a clear, introductory book on natural law bioethics, suitable for the college student or the general reader?’ Now, I have a ready answer. Previously, I recommended one or two books like Professor Gómez-Lobo’s Morality and the Human Goods (Georgetown University Press, 2002). However, although that book does touch on a number of bioethical issues (especially abortion and euthanasia), it is more an introduction to natural law ethics rather than natural law bioethics.  Still, it would make an excellent companion volume, and I think students would find it valuable to read it before reading Bioethics and the Human Goods.

Professor John Keown

The book mentions ‘basic goods’ and their importance for natural law theory. What are they and why are they so important?

The starting-point for natural law theory is to ask ‘What is the Good Life?’ It rejects standard utilitarian answers, whether in terms of pleasure or the satisfaction of desires, both of which could be used to justify obviously immoral acts. The answer given by natural law theory is that the Good Life is a life which involves true human fulfilment or flourishing. And what is a truly flourishing life? One in which one participates in the goods of life, health, friendship, knowledge, appreciation of art and beauty, work, play and practical reasonableness. (The precise formulation of basic goods may vary depending on which theorist one reads, but the theorists share the same, basic idea.) These goods are ‘basic’ in the sense that they are not merely instrumental goods, but are ends in themselves, worth pursuing for their own sake, and self-evidently so. (Of course, basic goods like health and knowledge can also be instrumentally valuable, but that does not reduce their worth to mere instrumentality. It is, for example, good for us to know about bioethics, or the history of the American Revolution, or one’s own personal history, even if one never uses that knowledge instrumentally.)

The basic goods form an objective basis for natural law ethics, but they need to be supplemented by intermediate moral principles, intermediate between the basic goods and our judgment about the ethics of particular conduct (‘Is it right for me to tell the patient he is fine when I know he is dying?’ ‘Should I allow the patient’s refusal of consent to prevent me from carrying out harmless and potentially ground-breaking research on her while she is anaethetised?’)  Much of Professor Gómez-Lobo’s book Morality focused on the key principles of ‘care’ and ‘respect’. In Bioethics he reformulates them in terms of ‘beneficence’ and ‘non-maleficence’. In doing so, he recognises the influential ‘four principles’ approach advocated by Professors Tom Beauchamp and Jim Childress, but he explains how those principles are conceived and applied from a natural law, rather than from a principlist, perspective. He rejected the ‘four principles’ approach on the ground that it failed to give a substantive account of the Good. Without such an account, he argued, it is impossible to judge what truly benefits or harms another.

In your book you suggest that, although natural law theory is compatible with major religious traditions, it is not grounded in religion. Can you explain?

Adherents of the great religions will find much in natural law that resonates with their teachings, such as its insistence that all human beings share a fundamental equality-in-dignity, including the most vulnerable, whether babies, people with profound intellectual disabilities, the comatose, the demented, the suffering and the dying.

For example, natural law theory’s opposition to infanticide (in contrast to its endorsement by leading utilitarians) resonates with the long-standing opposition to infanticide in the Judaeo-Christian tradition (in contrast to its endorsement by the ancient Greeks and Romans).  Natural law thinkers reject the ‘dualist’ notion of personhood, in which only some human beings, with certain mental abilities, count as ‘persons’ and others, like babies or elderly folk with severe dementia, do not.  Moreover, natural law theory is the philosophical tradition of the Catholic church.  Further, my brother Professor Damien Keown has, in his many publications, noted similarities between natural law ethics and Buddhist ethics. 

Despite these resonances between natural law theory and teachings of the great religions, however, natural law theory remains a philosophy, not a theology. It traces its origins to pre-Christian Greek thinkers like Aristotle, and is reflected in contemporary human rights documents in what many would describe as our post-Christian world.  Anyone can, and many do, adopt natural law’s absolute prohibitions on, say, torture or euthanasia, without having any religious belief whatsoever. In short, natural law is grounded on reason, not faith.

Is there not some distance between natural law theory and a detailed practical ethics? How can a medical practitioner use it to address thorny ethical issues in clinical practice?

There is always a distance between theory and practice, whichever ethical theory one adopts. But, partly because of the centuries-long history of the natural law tradition, much of the intellectual heavy lifting about its application to practical situations has already been done. That rich storehouse of reflection has shaped our laws and codes of professional ethics, whether in relation to carrying out research on patients, to treating or withholding treatment, and to killing or not killing.

That is not to say that natural law has figured out definitive answers to all the bioethical questions clinicians face in the contemporary world, but many of these questions are largely old questions in a new form. For example, the question of the moral status of the human embryo in vitro may have seemed utterly novel to many, but natural law theorists have been reflecting on the moral status of human embryos in vivo for centuries.  Again, the question whether to withhold or withdraw tube-feeding from a patient in PVS may, again, seem completely new and to require us to invent new ethical principles, but to natural law thinkers the answer lies in applying established ethical criteria which ask whether tube-feeding is a medical treatment and, if so, whether it is disproportionate as being either futile or too burdensome. This is not to suggest that the answers to such questions are easy, and will always attract consensus (even among natural law theorists) but it is to say that even challenging, contemporary bioethical questions can be resolved by the intelligent application of well-established principles.

In any event, we should not forget that most clinicians, most of the time, are not confronted with complex, thorny bioethical issues.  Most bioethical issues they face in everyday practice are fairly easily resolved by the application of established principles and codes of bioethics, such as those requiring informed consent and respect for confidentiality. And those principles and codes often reflect, to a greater or a lesser extent, natural law thinking, which requires respect for the basic rights and equality-in-dignity of each patient, not least the vulnerable, and that patients never be used as a mere means to the good of others. 

What would you say to natural law critics of the ‘new’ natural law theory which has been championed by philosophers like Grisez and Finnis?

Professors Grisez  and Finnis (and their collaborators, not least Professor Boyle) have been largely responsible for the exciting renaissance of natural law theory over the past 35 years or so. They would resist the label ‘new’ natural law on the ground that their theory is but a modern restatement of classical natural law theory. Not all natural lawyers would agree with that, but it seems to me that many of the criticisms are based on misunderstandings of the ‘new’ natural law project. This is one reason I co-edited (with Professor Robert P George of Princeton) a Festschrift in honour of John Finnis, (Reason, Morality and Law: The Philosophy of John Finnis) which was published by Oxford University Press in 2013, to allow both supporters and critics of his new classical theory to engage with him, and him with them.

In any event, college students and health care professionals interested in learning the basics of natural law bioethics may well find disagreements about whether and if so how the new classical theory of natural law differs from the old rather abstract and abstruse, and I would encourage them to start with some of the more introductory books and articles on natural law bioethics, written by scholars including Christopher Kaczor, Christopher Tollefsen, David Oderberg, Luke Gormally, David Jones, Helen Watt  and, of course, the late Alfonso Gómez-Lobo.




MORE ON THESE TOPICS | bioethics, ethics, Interviews, natural law

This article is published by John Keown and Xavier Symons and BioEdge 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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Ivy League agrees to tackling ban


Dartmouth clashes with Yale in 2009 (AP Photo/Bob Child)   

In January Steven H. Miles and Shailendra Prasada argued in the American Journal of Bioethics that it was unwise, unsafe and unethical for youngsters to play football.

Public schools should end their football programs because of the high prevalence of concussions… The brain is an irreplaceable organ, the health of which is foundational for the ability to learn, socialize and for fully realizing life’s physical and vocational opportunities.

Now the Ivy League, a conference of eight universities which play each other in a famous traditional rivalry, has agreed to stop all full-contact hitting from practices during the regular season. This is “the most aggressive measure yet to combat growing concerns about brain trauma and other injuries in the sport,” says the New York Times.

Research shows that fewer full-contact practices reduces the number of concussions.

Momentum for the change was created by the coach of Dartmouth University, Buddy Teevens. He introduced it in 2010 – but went on to an impressive record. His team placed third in the Ivy League in 2013, second in 2014 and equal first last year. “It hasn’t hurt our level of play,” he said. “It’s actually made us a better team.”

And bioethicist Arthur Caplan told Forbes:

“There’s two real incontrovertible points: The only real way to make the game safer that we know of right now is not equipment, but diminishing contact. There’s no equipment fix for injury. There is some hope that if you train a little more smartly, you can avoid certain orthopedic injuries, but I don’t see anything that’s going to cut back on the head injuries except less contact. So to put it succinctly: The only way to make it safer is to play it differently.”




MORE ON THESE TOPICS | football concussion

This article is published by Michael Cook and BioEdge 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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Canadian ethicists prepare for the worst


Conscientious objection seems like the paradigmatic ethical choice between right and wrong. An ethicist, of all people, ought to have this option, just as mathematicians count or sopranos sing.

Not so fast, write two healthcare ethicists at the Centre for Applied Ethics at McGill University Health Centre, in Montreal, in the blog Impact Ethics. Now that the Canadian Supreme Court has declared that euthanasia is a human right, it is time to focus on who is entitled to conscientious objection to participating in euthanasia. And perhaps ethicists are not.

We found ourselves asking the following questions: Should a clinical ethicist have the right to conscientious objection in cases of medical aid in dying? Can the role of the clinical ethicist to provide ethics analysis in matters of moral ambiguity be reconciled with a right to opt-out on the basis of personal convictions?

The nub of the question is this: when an ethicist is asked for advice, is she involved as a human being or is she merely a database of ethical choices? The ethicists write:

On the other hand, there is a growing consensus that clinical ethics expertise is grounded in the competence of the clinical ethicist to facilitate a robust process aimed at ensuring fair and transparent healthcare decisions. The clinical ethicist is expected to adopt a stance of neutrality which allows her to facilitate discussion of competing values without allowing her own beliefs to influence the discussion. 

On this view, it is not the “rightness” or “wrongness” of the final outcome by which the clinical ethicist is professionally judged, but rather her skill in guiding various stakeholders through a reasonable process; a clinical ethicist&r