Research Ethics

Pandemic Ethics: Extreme Altruism in a Pandemic

Written by Julian Savulescu and Dominic Wilkinson

Cross-posted with the Journal of Medical Ethics blog

Altruism is one person sacrificing or risking his or her own interests for another’s interests. Humans, like other animals, have a tendency towards altruism. This is usually directed to members of their own group. An example is donating a kidney to a family member. This is quite risky – it involves immediate risk of death from anaesthesia or post-operative complications, and long term risk of kidney failure.

But sometimes people are altruistic towards strangers.

Altruism often involves fairly small personal sacrifices. (For example, most people donate to charity, but in countries like the UK, it is typically only a tiny proportion of their income) Where someone can cause great benefit to another person at little or no personal cost, there is an ethical obligation for them to do so. This is the Duty of Easy Rescue. A whole movement has arisen called Effective Altruism which aims to ensure that altruistic acts do as much good as possible.

Altruism can also be extreme. Some people give up their entire livelihood to work overseas for aid agencies or charities. During a pandemic, health workers may take on significant personal risk to provide front-line medical care. In times of war, people may choose to literally give their life for others of their nation.

We can define extreme altruism as an act taken for the benefit of another that involves making large life-altering or life-threatening sacrifices or personal risks.

Society’s approach to extreme altruism is inconsistent. At times of obvious societal need, it encourages it (for example, clapping on the doorstep for ‘key workers’ is in order to offer our appreciation for their altruistic assumption of great risk) or even requires it by conscription of military personnel. At times of perceived lesser need, it is discouraged or even banned. For example, in normal times people are only allowed to take part in research, even if they do so with full knowledge and for no payment, if the risk of the research is minimal, and not if the risks are similar to everyday life. In some jurisdictions, altruistic kidney donations to strangers are banned.

It is not clear why extreme altruism should be limited to national emergency. If someone is competent, knows all the relevant facts, and is thinking clearly and choosing autonomously, they should be able to sacrifice their interests or even life for others. If someone is permitted to participate in highly risky personal activities for purely personal benefit (e.g. climbing Mount Everest, base jumping, or boxing) they ought to be permitted to at least take equivalent risks for the benefit of someone else (e.g. participating in research). Just as a rational, clear thinking person who is competent should be able to sacrifice their own life through suicide for any reason, they should be able to do this for the benefit of others.

We have argued at various points for extreme altruism in medicine. In one sense, there is a constant national emergency: we are all aging and slowly dying. There is a war against aging and death: we are fighting it with medicine. And people should be able sacrifice their interests or lives in this war. 

Extreme altruism extended to COVID-19

Continue reading

Pandemic Ethics: Is it right to cut corners in the search for a coronavirus cure?

By Julian Savulescu

Cross-posted from The Guardian

The race is on to find a treatment for coronavirus. This race is split between two approaches: the trialling of pre-existing drugs used for similar diseases, and the hunt for a vaccine. In both instances, important ethical decisions must be made. Is it OK to reassign a treatment that comes with side-effects? And with thousands dying from coronavirus every day, is it acceptable to cut corners in the search for a vaccine?

Read more: https://www.theguardian.com/commentisfree/2020/mar/25/search-coronavirus-cure-vaccine-pandemic

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

Puberty-Blocking Drugs: The Difficulties of Conducting Ethical Research

The ethics of research trials for young people with gender dysphoria are complicated.
Billion Photos/Shutterstock

Dominic Wilkinson, University of Oxford and Julian Savulescu, University of Oxford

A recent Newsnight programme reported that a major UK puberty-blocking trial is under investigation. Doctors at a London clinic provided drugs to block the development of puberty in young adolescents with gender dysphoria, a condition where the person experiences discomfort or distress because of a mismatch between their biological sex and gender identity.

The trial began in 2011. A year after starting the drugs, the young people were apparently more likely to report thoughts of wanting to harm themselves. The worry is that perhaps the treatment they received was causing them to have these thoughts of self-harm and suicide.

One of the criticisms of the study, put forward on Newsnight, is the design. The study involved giving the drugs to a group of adolescents and monitoring the effects. However, there was no control group, that is, adolescents who did not receive the drugs. This makes it hard to be sure whether the rates of self-harming thoughts are related to the drugs, would have happened anyway, or perhaps were lower than they would have been without treatment. Continue reading

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

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

Reversibility, Colds, and Neurosurgery

By Jonny Pugh

This blog was originally published on the Journal of Medical Ethics Blog

 

Happy new year to readers of the blog!

I always approach the new year with some trepidation. This is not just due to the terrible weather, or even my resolution to take more exercise (unfortunately in the aforementioned terrible weather). Instead, I approach January with a sense of dread because it is always when I seem to come down with the common cold.

In my recent research, I have been interested in the nature and moral significance of reversibility, and the common cold is an interesting case study of this concept. In this blog, I will use this example to very briefly preview a couple of points that I make in a forthcoming open access article about reversibility in the context of psychiatric neurosurgery. You can read the open access paper here.

Continue reading

The Fundamental Ethical Flaw in Jiankui He’s Alleged Gene Editing Experiment

By Julian Savulescu

Chinese researcher Jiankui He of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV).

On July 29, 2017, He uploaded a copy of his lecture on YouTube, “Evaluating the safety of germline genome editing in mouse, monkey and human embryos“. He finishes the lecture (see 11:22) arguing that experimentation in humans should be “slow” and with “caution”, remarking that “a single case of failure might kill the entire field”, as in the case of the death of Jesse Gelsinger. He closes with a picture of Gelsinger.

Gelsinger died during a somatic (not germline) gene therapy trial nearly 20 years ago. Early gene therapy trials were conducted with an emphasis on participant consent. A somatic cell gene therapy was developed for ornithine transcarbamylase deficiency, a disorder of nitrogen metabolism. The condition comes in two forms: mild, with normal life expectancy and management by diet, and severe, which is lethal in the first year. Researchers, acting on the advice of ethicists, decided to conduct the first trials in adults with the mild form of the disease as they were capable of consenting. Gelsinger consented at age 18 and died due to a catastrophic immune reaction. He would have had a normal life expectancy in the absence of the intervention.

At the time, I wrote this paper. I argued the main failing of that experiment was failure to minimise expected harm. The design of the trial was flawed; it should have been conducted in infants with the severe form of the disease, as this would have resulted in less expected harm.

Continue reading

Press Statement: Monstrous Gene Editing Experiment

Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV). 

If true, this experiment is monstrous. The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer. There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it.

This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.

It contravenes decades on ethical consensus and guidelines on the protection of human participants in research.

In many other places in the world, this would be illegal punishable by imprisonment.

Could gene editing ever be ethical? If the science progressed in the future and off target mutations reduced to acceptable and accurately measurable level, it might be reasonable to consider first-in-human trials (with appropriate safeguards and thorough ethics review) in one category of embryos: those with otherwise lethal catastrophic genetic mutations who are certain to die. Gene editing for this group might be life-saving; for these current babies, it is only life-risking.

These healthy babies are being used as genetic guinea pigs. This is genetic Russian Roulette.

Prof Julian Savulescu

Uehiro Chair in Practical Ethics

Director Oxford Uehiro Centre for Practical Ethics

University of Oxford

Gene-Editing Mosquitoes at The European Youth Event 2018

By Jonathan Pugh

 

The below is a slightly extended version of my two 5min presentations at the European Youth Event 2018, at the European Parliament in Strasbourg. I was asked to present on the following questions:

 

  1. What are the ethical issues surrounding gene-editing, particularly with respect to eradicating mosquitoes?

 

  1. Should the EU legislate on gene-editing mosquitoes?

 

Continue reading

Authors

Affiliations