Four Lessons from the Covert Separation and Study of Triplets

Written by Julian Savulescu

Today, the Journal of the American Medical Association published an article entitled “Three Identical Strangers and The Twinning Reaction— Clarifying History and Lessons for Today From Peter Neubauer’s Twins Study” written by Leon Hoffman and Lois Oppenheim.  It provides background to a documentary, Three Identical Strangers, which gained a lot of attention earlier in the year into “the lives of Edward Galland, David Kellman, and Robert Shafran, triplet brothers who stumbled upon each other in their college years and enjoyed a brief period of celebrity before emotionally confronting the implications of their separation.” One triplet ultimately committed suicide.

The triplets were part of a covert research study by child psychiatrist Peter Neubauer who followed them up for many years to study gene-environment interactions in triplets separated at birth. The article alleges that Neuberger was wrongly blamed by the triplets and film makers for their separation at birth. The authors argue it was “Viola Bernard, then a prominent child psychiatrist from Columbia University and consultant to a now-defunct adoption agency” who was responsible for their separation because she “believed that children born of the same pregnancy and placed for adoption would fare better if they were raised by separate families.” The authors review some evidence from the child development literature at the time that supported the idea that twins or triplets would fare better if adopted, experiencing less sibling rivalry and having greater access to parental resources.

Importantly they argue that Bernard and Neubauer acted independently of each other. Moreover, the secrecy was required by laws at the time. “It was illegal at the time of the study to provide information about biological families to adoptive parents, a practice that did not begin to be modified until the late 1970s and 1980s.”

Hoffman and Oppenheim conclude:

“So the study was ethically defensible by the standards of its time—principles of informed consent and the development of institutional review boards lay in the future.10 However, these documentaries demonstrate how unsatisfactory that defense is to the study’s families who live with its legacy.

The films’ message for today’s child specialists and researchers is thus something other than their surface themes of outrage and restitution. They rather provide an unusually dramatic example of the potential for harm from human participant research, even if only observational.”

I would like to draw four other lessons from this episode.

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Responsibility Over Time And Across Agents

Rebecca Brown and Julian Savulescu

Cross-posted from the Journal of Medical Ethics blog, available here.

There is a rich literature on the philosophy of responsibility: how agents come to be responsible for certain actions or consequences; what conditions excuse people from responsibility; who counts as an ‘apt candidate’ for responsibility; how responsibility links to blameworthiness; what follows from deciding that someone is blameworthy. These questions can be asked of actions relating to health and the diseases people may suffer as a consequence. A familiar debate surrounds the provision of liver transplants (a scarce commodity) to people who suffer liver failure as a result of excessive alcohol consumption. For instance, if they are responsible for suffering liver failure, that could mean they are less deserving of a transplant than someone who suffers liver failure unrelated to alcohol consumption.

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Abolish Medical Ethics

Written by Charles Foster

In a recent blog post on this site Dom Wilkinson, writing about the case of Vincent Lambert, said this:

If, as is claimed by Vincent’s wife, Vincent would not have wished to remain alive, then the wishes of his parents, of other doctors or of the Pope, are irrelevant. My views or your views on the matter, likewise, are of no consequence. Only Vincent’s wishes matter. And so life support must stop.’

The post was (as everything Dom writes is), completely coherent and beautifully expressed. I say nothing here about my agreement or otherwise with his view – which is comfortably in accord with the zeitgeist, at least in the academy. My purpose is only to point out that if he is right, there is no conceivable justification for a department of medical ethics. Dom is arguing himself out of a job. Continue reading

Is ‘Dad Joke” Sexist?

Written by Neil Levy

A dad joke is a short joke, often turning on a pun or a play on words. Here are a couple of examples:

  • Did you hear about the restaurant on the moon? It’s got great food, but no atmosphere.
  • A sandwich walks into a bar and orders a beer. “Sorry,” says the bartender, “we don’t serve food here”.

They are called ‘dad jokes’ because they are stereotypically told by fathers. The term is a somewhat backhanded compliment. Like the words “daggy” (in Australian and New Zealand English) and “naff” (in British English) – all of which are words that could appropriately be used to describe jokes in the genre – calling something a dad joke at once conveys that is extremely uncool, but also indicates grudging affection for the target. Dad jokes are bad, in many people’s eyes (not mine, as it happens), but they’re so bad that they’re a kind of artform all of their own, and we convey an affection and grudging respect for those who tell them. Continue reading

How Should We Regulate Genetic Enhancement Technologies?

A Guest Post Written by Jonny Anomaly

 

It’s been 20 years since Allen Buchanan and his colleagues published From Chance to Choice: Genetics and Justice. The book was a landmark, and it repays careful reading.

But there is at least one kind of question that has been largely (if not entirely) ignored in discussions about whether we should regulate parental choice, once parents have access to technologies that allow them to sculpt the genetic endowment of their children. How should we think about reproductive choices that are good for each but not for all? What should we do when there is a conflict between parents selecting the best traits for their children, when a different distribution of traits might be better from a social standpoint? Another way of asking the question is this: how should we think about situations in which there is a potential conflict between the principle of procreative beneficence and the principle of procreative altruism? Continue reading

The Ethics of Stress, Resilience, and Moral Injury Among Police and Military Personnel

In a fascinating presentation hosted in March by the Oxford Uehiro Centre in Practical Ethics, Professor Seumas Miller spoke about what is now known as ‘moral injury’ and its relation to PTSD, especially in the context of war fighting and police work. Continue reading

Guest Post: How Should We Evaluate Deaths?

Written by: Carl Tollef Solberg, Senior Research Fellow, Bergen Centre for Ethics and Priority Setting (BCEPS), University of Bergen.
Espen Gamlund, Professor of Philosophy, Department of Philosophy, University of Bergen.

In 2015, there were 56.4 million deaths worldwide (WHO 2017).[i] Most people would say that the majority of these deaths were bad. If this is the case, why is it so, and are these deaths equally bad?

Death is something we mourn or fear as the worst thing that could happen—whether the deaths of close ones, the deaths of strangers in reported accidents or tragedies, or our own. And yet, being dead is not something we will ever live to experience. This simple truth raises a host of challenging philosophical questions about the negativity surrounding our sense of death, and how and for whom exactly it is harmful. The question of whether death is bad has occupied philosophers for centuries, and the debate emerging in the philosophical literature is referred to as the “badness of death.” Are deaths primarily negative for the survivors, or does death also affect the decedent? What are the differences between death in fetal life, just after birth, or in adolescence? When is the worst time to die? These philosophical questions, although of considerable theoretical interest, is particularly relevant for how we evaluate deaths in global health, and policy-makers spending money to finance different health programs need to know how to answer them.  Continue reading

Withdrawing Life Support: Only One Person’s View Matters

Dominic Wilkinson, University of Oxford

Shortly before Frenchman Vincent Lambert’s life support was due to be removed, doctors at Sebastopol Hospital in Reims, France, were ordered to stop. An appeal court ruled that life support must continue.

Lambert was seriously injured in a motorcycle accident in 2008 and has been diagnosed as being in a persistent vegetative state. Since 2014, his case has been heard many times in French and European courts.

His wife, who is his legal guardian, wishes artificial nutrition and hydration to be stopped and Vincent to be allowed to die. His parents are opposed to this. On Monday, May 20, the parents succeeded in a last-minute legal appeal to stop Vincent’s doctors from withdrawing feeding, pending a review by a UN Committee on the Rights of Persons with Disabilities.

Lambert’s case is the latest example of disputed treatment for adult patients with profound brain injury. The case has obvious parallels with that of Terri Schiavo, in the US who died in 2005 following seven years of legal battles. And there have been other similar high-profile cases over more than 40 years, including Elena Englaro (Italy, court cases 1999-2008), Tony Bland (UK 1993) Nancy Cruzan (US 1988-90) and Karen Ann Quinlan (US 1975-76). Continue reading

Regulating The Untapped Trove Of Brain Data

Written by Stephen Rainey and Christoph Bublitz

Increasing use of brain data, either from research contexts, medical device use, or in the growing consumer brain-tech sector raises privacy concerns. Some already call for international regulation, especially as consumer neurotech is about to enter the market more widely. In this post, we wish to look at the regulation of brain data under the GDPR and suggest a modified understanding to provide better protection of such data.

In medicine, the use of brain-reading devices is increasing, e.g. Brain-Computer-Interfaces that afford communication, control of neural or motor prostheses. But there is also a range of non-medical applications devices in development, for applications from gaming to the workplace.

Currently marketed ones, e.g. by Emotiv, Neurosky, are not yet widespread, which might be owing to a lack of apps or issues with ease of use, or perhaps just a lack of perceived need. However, various tech companies have announced their entrance to the field, and have invested significant sums. Kernel, a three year old multi-million dollar company based in Los Angeles, wants to ‘hack the human brain’. More recently, they are joined by Facebook, who want to develop a means of controlling devices directly with data derived from the brain (to be developed by their not-at-all-sinister sounding ‘Building 8’ group). Meanwhile, Elon Musk’s ‘Neuralink’ is a venture which aims to ‘merge the brain with AI’ by means of a ‘wizard hat for the brain’. Whatever that means, it’s likely to be based in recording and stimulating the brain.

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Shamima Begum and the Public Good

Written by Steve Clarke,Wellcome Centre for Ethics and Humanities and Uehiro Centre for Practical Ethics, University of Oxford,

& School of Humanities and Social Sciences, Charles Sturt University

 

Shamima Begum, who left the UK in 2015 at age 15, to join the Islamic State, has been the subject of consistent media attention since she was discovered in the Al-Hawl refugee camp in Northern Syria, in February this year. Soon after being discovered in the refugee camp Begum was controversially stripped of her UK citizenship by Home Secretary Sajid Javid. Citizenship can be removed by the Home Secretary if doing so is deemed to be ‘conducive to the public good’. While it is illegal to render a person stateless, the Home Secretary is entitled to deprive UK citizens of their citizenship if they are also citizens of another country, or if they are eligible for citizenship in another country. Begum may be eligible for citizenship of Bangladesh, given that she has Bangladeshi ancestry, and there is a legal argument that she already is a citizen of Bangladesh.[1]

The Home Secretary’s decision has been much discussed in the media. Some commentators have argued that Begum’s interests should not be trumped by considerations of the public good. Others have questioned the legality of the decision. Still others have complained about the secretive nature of the decision-making process that led the Home Office to recommend to the Home Secretary that Begum be deprived of her citizenship. Here I will be concerned with a different issue. I will set aside considerations of Begum’s interests and I will set aside legal and procedural considerations. I will focus on the question of whether or not it is actually conducive to the public good in the UK to deprive Begum of her citizenship. Like most people, I do not have access to all of the information that the Home Secretary may have been apprised of, regarding Begum’s activities while she was living in the Islamic State, which would have informed his decision. So what I will have to say is necessarily speculative.

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