Medical ethics

Video Series: John Harris Defends Gene-Editing in Human Embryos

Novel gene editing technologies, such as CRISPR/Cas9, allow scientists to make very precise changes in the genome of human embryos. This could prevent serious genetic diseases in future children. But the use of gene editing in human embryos also raises questions: Is it safe? Should prospective parents be free to choose the genetic characteristics of their children? What if they want to use gene editing to have a deaf child, or a child with fair skin and blue eyes? Should gene editing be regulated globally, or should each country have their own legislation? In this interview with Katrien Devolder, John Harris (Professor Emeritus, University of Manchester &  Visiting Professor in Bioethics, King’s College London) answers these and other questions, and defends the view that we have the strongest moral obligation to gene-edit human embryos, not only to prevent disease but also for the purpose of enhancement.

Video Series: Should We Pay People to Quit Smoking or Lose Weight?

Should we pay people to quit smoking or lose weight? Would paying them amount to coercion?  Is there a risk that if we start paying for healthy behaviour, its value will be corrupted? Is paying unhealthy people unfair to those who already lead healthy life styles? In this video interview (with Katrien Devolder),  Dr Rebecca Brown from the Oxford Uehiro Centre for Practical Ethics responds to these and other concerns and defends the use of financial incentives as a tool for health promotion.

Womb Transplants and Child-Centred Surrogacy

 

Julian Savulescu

Womb transplants are again in the news as Richard Paulson, president of the American Society for Reproductive Medicine (ASRM), said there was no reason to believe that the treatment could not work for transgender women at recent conference in Texas.

The ethical issues of performing a womb transplant for a transgender women are substantially the same as the issues facing ciswomen.

The most important ethical consideration in the UK for a womb transplant is distributive justice. Limited health care resources should not be used for womb transplants because there are more cost effective methods of assisted reproduction available. However if an individual wishes to use their own funds for such a procedure, they should be made aware of the risks (which are very significant), and the alternatives, such as surrogacy.

The best interests of the future child is another critical consideration. The moral status of the fetus is a topic of much debate. However, even if we consider abortion to be acceptable, and deny that the fetus has a moral status that accords it its own interests, in cases where the mother plans to carry the pregnancy to term, the fetus represents the future child who does of course have interests (albeit that they are to be weighed against the mother’s own interests, and that the mother is responsible for making decisions on their behalf).

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Judges Are Paid To Express Opinions

Introduction

In a series of five harrowing judgments, the President of the Family Division, Sir James Munby, expressed his frustration with the system that endangered the life of a child who was the subject of care proceedings. He was forthright. Some of his words were quoted in the press. A headline in the Guardian read: ‘Judge warns of ‘blood on our hands’ if suicidal girl is forced out of secure care.’ ‘Why won’t NHS help?’ asked the Sun. ‘State will have ‘blood on its hands’ if suicidal teen doesn’t get hospital bed soon, top judge warns.’

While the judge’s comments seemed generally to be applauded by the media, not all were happy. Here is a typical example of a commentator who was not:

To use a rhetorical outburst in one case to make broader political points about the state of public services jeopardises the principle of judicial separation. In saying that there are occasions when doing right “includes speaking truth to power”, and openly condemning the lack of adequate public resources, is to leave the respected realm of judicial neutrality and to enter the political fray. Language and tone matter. Even if the diagnosis is fair, for a judge to use this tactic is, well, pretty ill-judged.’ Continue reading

Organ Donation: Presumed Consent and Focusing on What Matters

Recent newspaper reports covered the story of Jemima Layzell, a 13 year old who died suddenly of a brain aneurysm in 2012. According to reports, shortly before Jemima died, the subject of organ donation had come up in discussions with her family, prompted by the death of a family friend in a car accident. As a result, Jemima’s family were confident she would have wanted her organs to be donated. Subsequently, Jemima’s kidneys, liver, lungs, pancreas, small bowel and heart were transplanted. This meant that a record eight people’s lives were saved, prolonged or dramatically enhanced as a consequence of Jemima’s and her family’s decision.

Decisions about organ donation are extremely difficult. Family members are approached about the prospect of donating their loved one’s organs at a time of extraordinary distress. Uncertainty about the wishes of the person who has died, along with confusion or scepticism about brain death criteria, religious or other spiritual beliefs about bodily integrity, fear about how donated organs will be used, and inability or unwillingness to engage with any form of decision-making can result in the refusal of family members to allow organs to be donated. In England, family members can prevent donation even when the individual has expressed a wish to donate her organs, for instance, by signing up to the organ donor register. Continue reading

‘Being a burden’: an Illegitimate Ground For Assisted Dying

The issue of the legality in England and Wales of physician-assisted suicide has recently been revisited by the Divisional Court. Judgment is awaited. The judgment of the Court of Appeal, granting permission for judicial review, is here.

The basic issue before the Court of Appeal was the same as that in Nicklinson v Ministry of Justice and R (Purdy) v DPP: does the right to determine how one lives one’s private life (protected by Article 8 of the European Convention on Human Rights)  confer a right to have an assisted death?

Many factors have been said to be relevant to decisions about assisted dying. They include intractable pain (rather a weak criterion, given modern palliative methods), hopeless prognosis – likely to result in death in a short time –  and simple autonomy (‘It’s my right to determine where, when, and in what circumstances I end my life, and that’s an end of the matter’). One factor, commonly in the minds of patients asking for help in ending their lives, but rarely mentioned by advocates of assisted dying, is that the patient feels that she is a burden to her family and carers. Continue reading

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

Does Female Genital Mutilation Have Health Benefits? The Problem with Medicalizing Morality

By Brian D. Earp (@briandavidearp)

Please note: this piece was originally published in Quillette Magazine.

 

Four members of the Dawoodi Bohra sect of Islam living in Detroit, Michigan have recently been indicted on charges of female genital mutilation (FGM). This is the first time the US government has prosecuted an “FGM” case since a federal law was passed in 1996. The world is watching to see how the case turns out.

A lot is at stake here. Multiculturalism, religious freedom, the limits of tolerance; the scope of children’s—and minority group—rights; the credibility of scientific research; even the very concept of “harm.”

To see how these pieces fit together, I need to describe the alleged crime.

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Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu

 

On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons. Continue reading

Press Release – “The Worst Outcome” Prof Dominic Wilkinson

This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.

This is the worst possible outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.

There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.

We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.

We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.

Medical tourism for controversial treatment options

By Dominic Wilkinson

 

Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.

However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.

One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism? Continue reading

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