Regulation

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.

Continue reading

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.

Continue reading

Arbitrariness as an Ethical Criticism

Written by Ben Davies

We recently saw a legal challenge to the current UK law that compels fertility clinics to destroy frozen eggs after a decade. According to campaigners, the ten-year limit may have had a rationale when it was instituted, but advances in freezing technology have rendered the limit “arbitrary”. Appeals to arbitrariness often form the basis of moral and political criticisms of policy. Still, we need to be careful in relying on appeals to arbitrariness; it is not clear that arbitrariness is always a moral ‘deal-breaker’.

On the face of it, it seems clear why arbitrary policies are ethically unacceptable. To be arbitrary is to lack basis in good reasons. An appeal against arbitrariness is an appeal to consistency, to the principle that like cases should be treated alike. Arbitrariness may therefore seem to cut against the very root of fairness.

Continue reading

Press Release: In Defence of Intersex Athletes

Julian Savulescu

The Court of Arbitration for Sport (CAS) has announced that multiple Olympic and World Champion runner Caster Semenya and other athletes with disorders of sex (DSD) conditions will have to take testosterone lowering agents in order to be able to compete in her events.

Reducing the testosterone levels of existing intersex female athletes is unfair and unjust.

The term intersex covers a range of conditions. While intersex athletes have raised levels of testosterone, its effect on individual performance is not clear.  Some disorders which cause intersex change the way the body responds to testosterone. For example, in Androgen Insensitivity syndrome, the testosterone receptor may be functionless or it may be partly functional. In the complete version of the disorder, although there are high levels of testosterone present, it has no effect.

As we don’t know what effect testosterone has for these athletes , setting a maximum level is sketchy because we are largely guessing from physical appearance to what extent it is affecting the body. It is not very scientific. We simply don’t know how much advantage some intersex athletes are getting even from apparently high levels of testosterone. Continue reading

Medical Nihilism: When A Dose Of Scepticism Can Be Healthy

In his 2018 book, the philosopher of science, Jacob Stegenga defends the view “that we should have little confidence in the effectiveness of medical interventions.” (Stegenga 2018) On the face of it, he acknowledges, this position seems unreasonable: most of us can think of myriad ways in which modern medicine has improved – perhaps saved – our own lives and the lives of those close to us. The asthma attack I had as a baby, effectively treated at the time and subsequently managed through the use of seemingly magical medications which relax the muscles around the airways, opening them up and allowing air to pass freely again. Or the schoolfriend whose ruptured appendix could have resulted in a fatal infection, but for emergency surgery and the administration of antibiotics. Or the countless lives made less painful by the availability of cheap and safe painkillers. 

Medical sceptics tend to get a bad rep – anti-vaxxers who risk the lives of children by regurgitating debunked myths about the links between vaccines and autism, leading to dips in herd immunity and disease outbreaks; credulous folk who believe in the mystical powers of homeopathy and eschew conventional therapies in favour of potions that contain little more than water. This is not the sort of company one wishes to associate with. Continue reading

Is there a Moral Problem with the Gig Economy?

by Roger Crisp

Nearly all of us have been involved with the so-called ‘gig economy’ in some way or other, whether by calling an Uber or by ordering a pizza via Deliveroo. Indeed my elder daughter was a ‘Roo’ for a while (not long, I’m glad to say), so I have had some insight, albeit vicarious, into what gig work is really like. But of course the gig economy has come under a lot of moral scrutiny in recent years – hence Dan Halliday’s fascinating and well attended New St Cross Special Ethics Seminar on Thursday 28 February. Continue reading

Press Statement: He Jiankui

The response  to reckless human experimentation has to go way beyond Dr He’s dismissal. This is not merely a failure of compliance, Dr He failed to grasp the ethical principles and concepts he was vigorously espousing.  There will undoubtedly be more guidelines and laws on gene editing but we also need basic education of the next generation of scientists in what ethics is and why this kind of behaviour is wrong. This was not a failure of science, or even regulation, but ethics.

More important than He’s fate is the future for those victims affected. The couples and babies will need world class medical management and counselling. The second couple carrying a gene edited pregnancy should have already been fully informed of and understood the risks to their fetus and given the free choice to continue or terminate their pregnancy.

Prof Julian Savulescu
Uehiro Chair in Practical Ethics
Director Oxford Uehiro Centre for Practical Ethics
University of Oxford

Visiting Professorial Fellow
Murdoch Children’s Research Institute
And University of Melbourne

 

A third MRT-baby is on its way

Written by César Palacios-González

It has been recently reported (link in Spanish) that a 32 year old Greek woman is 27 weeks pregnant with a child who was conceived after a mitochondrial replacement technique (MRT) – in this case Maternal Spindle Transfer (MST). If true this is really big news in terms of reproductive medicine and biotechnology, we are still waiting for data to be published. If successful, this would be just the third birth following a reproductive technique that mixes the DNA of three people (you will probably remember the big media buzz a couple of years ago about ‘three parent babies’). This newest feat was achieved by a group of Spanish and Greek scientists; the clinical trial was carried out in Greece due to the fact that in Spain MRTs are not on the list of authorised reproductive techniques.

Before discussing what I consider to be the main ethical issue with this case, let us talk a bit about mitochondria and MRTs. Every human egg contains thousands upon thousands of mitochondrion. These tiny organelles have the really important task of producing the energy (in the form of ATP) that first the egg, then the developing embryo, and finally the human adult need to adequately function. It is thus not strange that when mitochondria do not work as they should the human body ‘malfunctions’. And it is also not strange that mitochondrial dysfunction more significantly affects the organs that require the most energy, for example the brain and the muscles.

To understand, broadly, what can go wrong with mitochondria, we need to bear in mind two of their characteristics: a) that they have their own DNA, and b) that they are mostly solely maternally transmitted. Regarding the former, inside every nucleated human cell there is nuclear DNA (nDNA) and there is mitochondrial DNA (mtDNA).

 

Continue reading

Should Gene Editing Be Compulsory?

Written by Julian Savulescu

Hypothetical Case 1: Enzyme Replacement Therapy for Gaucher’s Disease

Consider a hypothetical version of a real life disease, Gaucher’s Disease. Gaucher’s disease is an inherited disorder caused by a genetic mutation. The mutation means an enzyme–  glucocerebrosidase — is not produced. A a result, glucerebrosides (fats) build up, damaging cells. This can cause bone fractures, liver enlargement, and bleeding but most importantly, brain damage. Once this has occurred it is irreversible.

Enzyme Replacement Therapy (ERT) is now available and for the purposes of this hypothetical case, the treatment offered, if given from the moment of birth, will prevent all damage (in real life current enzyme replacement treatments do prevent most symptoms, but do not affect nervous system involvement).

In our hypothetical case, a child is born to parents known to carry the mutation for Gaucher’s Disease, and prenatal testing has already confirmed that the baby is affected. ERT must be started at birth in order to prevent brain and other damage. However, the parents are Christian Scientists and refuse medical treatment. They believe prayer can cure their child’s condition.

Doctors are concerned the missing enzyme needs to be replaced before the child’s brain is damaged. They take the case to court where judges agree that therapy is in the child’s best interests.

Continue reading

Should Abortion be a Matter of Referendum?

Alberto Giubilini
Wellcome Centre for Ethics and Humanities and Oxford Martin School, University of Oxford

I am writing this post on the 25th of May, as the Irish abortion referendum is taking place. However, you will probably be reading it once the results are already known. I am not going to write in support of either side of the debate here anyway. I want to write about the appropriateness (from an ethical point of view) of this referendum itself. I want to suggest that a referendum is not the appropriate way to solve the dispute at stake.

Irish people have been asked whether they wanted to repeal the Eight Amendment of the Irish Constitution, which gives foetuses and pregnant women an “equal right to life”. It is commonly assumed that the Eight Amendment was preventing the Irish Government from legalizing abortion, except in extreme and very rare circumstances in which abortion is necessary to save the life of a pregnant woman. If the majority of Irish people votes “yes”, abortion can become legal in the country. If the majority votes “no”, abortion will remain a crime in the country, with the exception of a few extreme and very rare circumstances. More specifically, voting “no” means voting in favour of the idea that in Ireland a foetus does have a right to life equal to the right to life of the woman. Voting “yes” means voting in favour of the idea that in Ireland the foetus does not have a right to life comparable to the right to life of a woman; in other words, that it can be considered merely as part of the woman’s body for the purpose of attributing it a right to life (though not necessarily for other purposes), and therefore something that a woman can permissibly decide not to keep alive as a matter of bodily autonomy or, in many cases, and depending on what definition of “health” we adopt, as a matter of basic healthcare.

Continue reading

Authors

Subscribe Via Email

Affiliations