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

15 Aug, 17 | by bearp

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.

* * *

The term “FGM” is likely to bring to mind the most severe forms of female genital cutting, such as clitoridectomy or infibulation (partial sewing up of the vaginal opening). But the World Health Organization (WHO) actually recognizes four main categories of FGM, covering dozens of different procedures.

One of the more “minor” forms is called a “ritual nick.” This practice, which I have argued elsewhere should not be performed on children, involves pricking the foreskin or “hood” of the clitoris to release a drop of blood.

Healthy tissue is not typically removed by this procedure, which is often done by trained clinicians in the communities where it is common. Long-term adverse health consequences are believed to be rare.

Here is why this matters. Initial, albeit conflicting reports suggest that the Dawoodi Bohra engage in this, or a similar, more limited form of female genital cutting – not the more extreme forms that are often highlighted in the Western media. This fact alone will make things rather complicated for the prosecution.

The defense team has already signaled that it will emphasize the “low-risk” aspect of the alleged cutting, claiming that it shouldn’t really count as mutilation. It is, after all, far less invasive than Jewish ritual male circumcision, which is legally allowed on minors in the US, no questions asked.

Based on this discrepancy, if attorneys for the Bohra can show a gendered or religious double standard in existing law, the ramifications will be not be small. Either male circumcision will have to be restricted in some way, or “minor” forms of FGM permitted. The outcome either way will be explosive.

I will dig into the male-female comparison—and explore its legal implications—later on. But the law will not actually be my main focus. Instead, what I’ll suggest in this piece is that the question of health consequences, whether positive or negative, should not exhaust the ethical analysis of these procedures.

There is more to “good” and “bad” than healthy versus unhealthy.

In fact, as the Bohra case will show, there are serious, even dangerous downsides to medicalizing moral reasoning – and to moralizing medical research. On both counts, I argue, at least when it comes to childhood genital cutting, apparently biased policies from the WHO are making things a great deal worse.

* * *

“The tendency today is to roll over and ‘scientify’ everything,” says Julian Savulescu, a philosopher at the University of Oxford. He goes on: “Evidence will tell us what to do, people believe.” But people are getting it wrong. When you reduce your ethical analysis to benefit-risk ratios, you miss important questions of value.

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Charlie Gard: An Ethical Analysis of a Legal non-Problem

11 Aug, 17 | by Iain Brassington

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty.  Elements of the American media (this piece, which I’ve mentioned before, is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems:

Nigel Farage weighed in, complaining about the state taking away parental rights:

From the left, Giles Fraser wrote that the case was being dealt with too rationally.  None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. more…

The ‘Weird’ First Fortnight of the Foetus: Implications for the Abortion Debate

10 Aug, 17 | by miriamwood

Guest Post: William Simkulet
Paper: The Cursed Lamp: The Problem of Spontaneous Abortion

For many people, the moral status of abortion stands or falls whether or not a human fetus is morally comparable to you or I; whether its death is a significant loss.  Many people believe human fetuses have a right to life from conception, and thus conclude that there is good reason to think induced abortion is seriously morally wrong.  Judith Jarvis Thomson challenges this belief, constructing a scenario where she believes it is morally acceptable to end the life of a person because although he has a right to life, his right to life does not give him a right to use your body.  Her example should be familiar:

Violinist:  You wake up in the hospital, surgically attached to a violinist.  Your doctor explains that last night the Society of Music Lovers kidnapped the two of you and performed the surgery.  The violinist has a serious condition that will result in his death soon unless he remains attached to your kidneys for the next 9 months (you alone are biologically compatible).

The violinist has a right to life, and surely you are free to let him remain attached to your body to save his life.  It would be a great kindness for you to do so, but Thomson says that the violinist’s right to life does not give him the right to use your body.  Anti-abortion theories that focus on the moral status of the fetus neglect to show why the fetus’s moral status – its argued for right to life – would give it a right to use the woman’s body.

The violinist case is supposed to be a counterexample to the claim that a right to life gives one a right to your body.  However, it is easy to misread the case as an analogy for pregnancy.  John T. Wilcox, I think, does something like this, and raises a rather important criticism – the violinist example is weird, he contends, while pregnancy is “the opposite of weird.” The thrust of this argument is that we should not trust our intuitions about Violinist, but we should trust our intuitions about pregnancy; and many people have the intuition that human abortion is a serious moral loss because fetuses are persons from conception.

But pregnancy – especially early pregnancy – is weird.  Most of us are not intimately familiar with the nuances of fertilization and fetal development.  If we were, we would recognize that within the first two weeks of pregnancy, the fetus is under constant danger – danger, that parents and anti-abortion theorists alike seem to neglect.  Approximately half of all human fetuses are spontaneously aborted within the first two weeks of pregnancy. During these first two weeks of pregnancy, a fetus’s cells are totipotent, such that each one can separate to form a full human being – creating identical twins, resulting in the loss of one unique person and creating two different “replacement” fetuses.  Furthermore, two or more fetuses can chimera, ceasing to exist and creating a single, distinct organism.

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Ethics Committees Should Have Standards in Preparing New Members

8 Aug, 17 | by miriamwood

Guest Post: Danish Zaidi and Jennifer Kesselheim
Paper: Assessment of orientation practices for ethics consultation at Harvard Medical School-affiliated hospitals

Ethics advisory committees (EACs), or clinical ethics committees, fulfill an important role in hospitals, providing ethics consultation, contributing to hospital-wide policies, and educating staff on ethical dimensions of medical practice. Our study built upon a central question: what qualifies one to serve on these sorts of committees? It’s a question with added relevance to us as authors: Danish Zaidi was part of the inaugural class of the Harvard Medical School Master of Bioethics program and Jennifer Kesselheim is an EAC co-chair and the founding director of the Harvard Medical School Master of Medical Sciences (MMSc) in Medical Education program. We studied how EACs recruit and educate members of their committees. In particular, what orientation practices were use in educating new members of EACs and how did members perceive confidence were member in fulfilling their duties on the other end of their “orientation”?

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Advances in Neuroscience Strengthen Ethical Opposition to Harmful Experiments on Dogs

2 Aug, 17 | by miriamwood

Guest Post: Jarrod Bailey, Cruelty Free International, London, UK.

Paper: Advances in Neuroscience Imply that Harmful Experiments in Dogs are Unethical

More than 200,000 dogs are used in harmful experiments every year worldwide, in research into human and animal diseases and in the testing of new drugs and agrochemicals. This continues despite significant public opposition to it, and of increasing scientific evidence of its poor human relevance and misleading nature. From a utilitarian perspective, these alter the harm-to-benefit balance of using dogs in experiments. If experiments on dogs cause more suffering than is commonly appreciated, and if they are not delivering the human benefits that are claimed of them, then these experiments must be reconsidered by those who fund, license, and conduct them.

But how do we know how much dogs can suffer, and how much joy they can experience and are thus deprived of in a laboratory? Many would argue that it is simply obvious that dogs have impressive cognitive capabilities, as well as experiencing positive and negative emotions. This is not enough for science, of course, which seems unable or unwilling to accept sentience in nonhumans as it does for humans, based on weight of evidence. For many years, efforts to understand the minds of dogs in more detail have centred on ethological research which, while extremely valuable, does have some associated, widely acknowledged caveats. It can only go so far, especially for those for whom the evidence it produces can perhaps never be sufficient to warrant a change of attitude and behaviour towards dogs.

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Pain After Cancer: A New Model for Pain Psychology?

27 Jul, 17 | by bearp

Guest Post by Lauren Heathcote

What if every headache, every slight twinge in your back, was potentially life threatening? What if you couldn’t tell a brain tumour from coffee-withdrawal? These can be constant, niggling worries for many people who have survived cancer, and we think their experiences can tell us something important about pain.

If you have read a Body in Mind blog post over the last few years you will likely have come across the idea that pain is all about meaning. Pain is about perceiving threat and danger to the body. The general idea is that the brain uses different types of information – including from the external and internal world through our senses, and from within brain centres that encode things like emotion and memory – to decide how much danger the body is in. The brain then produces an output based on all this information, the feeling of pain, to reflect that danger. Importantly, how we interpret painful sensations is an integral part of assigning meaning and making sense of those experiences.

So if pain is about threat – if it’s about meaning – an ideal model to study pain would be one where there is little tissue damage but a high level of perceived danger. Scientists have played around with this idea in the lab for a few decades now (like this cool study in adults and this ace study in kids). The trouble is; thanks to our cushty[1] modern ethics system, making lab participants feel like they are in extreme, life-threatening danger is understandably a bit of a no-go.

So what about outside the lab? A little while ago I became interested in the experience of pain following cancer treatment. Pain is not only a common experience during and after cancer treatment, but it is also one of the most common symptoms that leads to an initial cancer diagnosis. Many individuals live with pain for months before receiving a cancer diagnosis, making pain an experience that was ignored for so long but indicative of such grave danger.  It’s hardly surprising, then, that the experience of pain after cancer can be an anxiety-inducing event. Imagine you are given the ‘all clear’ and you are told to go out and live your life despite the near-constant fear that the cancer may return. How do you live within your body from that moment on? How do you judge a true from a false alarm?

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Can We Trust Research in Science and Medicine?

26 Jul, 17 | by bearp

By Brian D. Earp  (@briandavidearp)

Readers of the JME Blog might be interested in this series of short videos in which I discuss some of the major ongoing problems with research ethics and publication integrity in science and medicine. How much of the published literature is trustworthy? Why is peer review such a poor quality control mechanism? How can we judge whether someone is really an expert in a scientific area? What happens when empirical research gets polarized? Most of these are short – just a few minutes. Links below:

Why most published research probably is false

The politicization of science and the problem of expertise

Science’s publication bias problem – why negative results are important

Getting beyond accusations of being either “pro-science” or “anti-science”

Are we all scientific experts now? When to be skeptical about scientific claims, and when to defer to experts

Predatory open access publishers and why peer review is broken

The future of scientific peer review

Sloppy science going on at the CDC and WHO

Dogmas in science – how do they form?

Please note: this post will be cross-published with the Practical Ethics blog. 

Re: Nudges in a Post-truth World 

19 Jul, 17 | by bearp

Guest Post: Nathan Hodson 

In a recent article in the Journal of Medical Ethics, Neil Levy has developed a concept of “nudges to reason,” offering a new tool for those trying to reconcile medical ethics with the application of behavioural psychological research – a practice known as nudging. Very roughly, nudging means adjusting the way choices are presented to the public in order to promote certain decisions.

As Levy notes, some people are concerned that nudges present a threat to autonomy. Attempts at reconciling nudges with ethics, then, are important because nudging in healthcare is here to stay but we need to ensure it is used in ways that respect autonomy (and other moral principles).

The term “nudge” is perhaps a misnomer. To fill out the concept a bit, it commonly denotes the use of behavioural economics and behavioural psychology to the construction of choice architecture through carefully designed trials. But every choice we face, in any context, already comes with a choice architecture: there are endless contextual factors that impact the decisions we make.

When we ask whether nudging is acceptable we are asking whether an arbitrary or random choice architecture is more acceptable than a deliberate choice architecture, or whether an uninformed choice architecture is better than one informed by research.

In fact the permissibility of a nudge derives from whether it is being used in an ethically acceptable way, something that can only be explored on an individual basis. Thaler and Sunstein locate ethical acceptability in promoting the health of the person being nudged (and call this Libertarian Paternalism — i.e. sensible choices are promoted but no option is foreclosed). An alternative approach was proposed by Mitchell: nudges are justified if they maximise future liberty. Either way the nudging itself is not inherently problematic.

Detailing the relevant psychological research, Levy outlines how our responses to new information are influenced by our understanding of the source. Does the source stand to benefit from persuading us? Does the source wish us good or ill? These are classified as Messenger factors in the Behavioural Insights Team’s1 MINDSPACE classification.

Levy goes on to show how sensitivity to these factors makes evolutionary sense and as such constitutes part of our subconscious reasoning. Nudges that promote appropriate sensitivity to the factors, then, do not subvert our rationality; they apply or appeal directly to it.

There is huge scope within Levy’s grouping of nudges for interventions that do not threaten autonomy. For example the “N” in MINDSPACE stands for “norms.” An attuned sensitivity to group norms is adaptive in the same way as are messenger factors. But there is another group of nudges that actively promote autonomy.

The challenges to healthcare and wider society in this purportedly post-truth era demand improved quality of public debate and individual deliberation, and nudges can help. Building on Mitchell’s notion that nudges can be good if they increase future liberty and taking a rich conception of autonomy maximised through reflection and rationality, we could conceive of nudge-based policies which maximise current autonomy.  more…

Charlie Gard and the Ethics Commentator

18 Jul, 17 | by miriamwood

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in an article for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.

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Guest Post: Withdrawing Life-Prolonging Treatment in the Patient’s Best Interests: The Implications of Briggs

14 Jul, 17 | by miriamwood

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in the Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions. It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.

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