Regulation

An Ambitious Vision for Bioethics – Some Reflections on Professor Jing-Bao Nie’s St Cross Seminar

Written by Ben Davies

Many readers of the Practical Ethics blog will remember the astounding announcement last November by Chinese researcher He Jiankui that he had used CRISPR-cas9 technology to edit into two healthy embryos a resistance to developing HIV, later resulting in the birth of twins Lulu and Nana. As Professor Julian Savulescu expressed in several posts on this blog, the announcement spurred widespread ethical condemnation.

The first in this year’s series of St Cross Special Ethics seminars saw the University of Otago’s Professor Jing-Bao Nie (who is also currently a 2019/20 Fellow of Durham University’s Institute of Advanced Study) get behind the headlines to consider the political and social context of He’s experiment. At the core of Professor Nie’s presentation was that the decision to engage in genetic editing of healthy embryos could neither be written off as the act of a ‘rogue researcher’, nor dismissed as merely the product of a uniquely Chinese disregard for ethics, as some have argued.

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Press Release: Tafida Raqeeb: Right Outcome, Wrong Reasons

Written by Professor Julian Savulescu

Dominic Wilkinson describes well the decision to allow a severely brain damaged girl, Tafida Raqeeb, to travel to Italy to continue to be kept alive with artificial ventilation.

This is the right outcome. It appears as if Tafida is insensate or unconscious. If Tafida is vegetative, continuing treatment won’t cause suffering. So it is not harmful for her to be transferred to Italy at her parent’s request. (It would also be permissible to discontinue medical treatment.)

There is some chance she might experience something, in other words that she is minimally conscious. If she is minimally conscious, doctors would have to show she is unrelievably suffering in order to discontinue treatment in her interests. That has not been demonstrated in this case.

Medicine is provided to patients in their best interests. It is not clear, at least to me, whether it is against Tafida’s interests to continue to be kept alive. Italian experts cite a number of reasons to continue to keep Tafida alive, not least to clarify prognosis and to allow parents to come to terms with the situation.

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Guest Post: Introducing Charlie’s Law, Bambos Charalambous MP (Labour, Enfield Southgate)

Bambos Charalambous MP (Labour, Enfield Southgate)

The tragic case of Charlie Gard, who sadly died in 2017 following a serious and protracted illness, attracted significant global attention because of the harrowing dilemmas that it highlighted.
Charlie’s story, was fraught with high tensions and unfurled very much in the public eye as a result of the constant media coverage, highlighted the inadequacy of current processes to prevent prolonged and distressing legal conflicts between the parents of seriously ill children and those responsible for their medical care.

Since Charlie’s death Charlie’s parents Connie Yates and Chris Gard have campaigned with dignity and determination to improve the situation for everyone involved: parents, healthcare professionals, hospitals, and the NHS more broadly; recognising that everyone wants the same thing: to maximise the life chances and general welfare of children suffering from serious illnesses and to reduce any stress on their parents who may be coming to terms with the potential death of their child. Continue reading

The Doctor-Knows-Best NHS Foundation Trust: a Business Proposal for the Health Secretary

By Charles Foster

Informed consent, in practice, is a bad joke. It’s a notion created by lawyers, and like many such notions it bears little relationship to the concerns that real humans have when they’re left to themselves, but it creates many artificial, lucrative, and expensive concerns.

Of course there are a few clinical situations where it is important that the patient reflects deeply and independently on the risks and benefits of the possible options, and there are a few people (I hope never to meet them: they would be icily un-Falstaffian) whose sole ethical lodestone is their own neatly and indelibly drafted life-plan. But those situations and those people are fortunately rare. Continue reading

Making Ourselves Better

Written by Stephen Rainey

Human beings are sometimes seen as uniquely capable of enacting life plans and controlling our environment. Take technology, for instance; with it we make the world around us yield to our desires in various ways. Communication technologies, and global transport, for example, have the effect of practically shrinking a vast world, making hitherto impossible coordination possible among a global population. This contributes to a view of human-as-maker, or ‘homo faber‘. But taking such a view can risk minimising human interests that ought not to be ignored.

Homo faber is a future-oriented, adaptable, rational animal, whose efforts are aligned with her interests when she creates technology that enables a stable counteraction of natural circumstance. Whereas animals are typically seen to have well adapted responses to their environment, honed through generations of adaptation, human beings appear to have instead a general and adaptable skill that can emancipate them from material, external circumstances. We are bad at running away from danger, for instance, but good at building barriers to obviate the need to run. The protections this general, adaptable skill offer are inherently future-facing: humans seem to seek not to react to, but to control the environment.

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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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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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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.

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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

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