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Law

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.

more…

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…

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.

more…

Never Let an Ill Child Go to Waste

7 Jul, 17 | by Iain Brassington

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere.  Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted.  One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative.  Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him.  If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents.  Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself.  I don’t think it’s anything too radical.  Yet the coverage of the case has been, in places, something of a trainwreck.  Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer).  It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

Charlie’s parents, Connie Yates and Chris Gard, are fighting to bring their son to the U.S. for experimental treatment. They’ve raised $1.7 million on a crowdfunding website to do so.

But Charlie’s doctors, and the British courts, won’t let him go. Medical authorities argue that prolonging his life by keeping him on a ventilator could cause him pain. British authorities won’t even let the parents take him home to die.

Well, yes and no.  I mean, it’s true that Charlie won’t be travelling abroad for treatment, but the tone here is deeply misleading: it’s presented as a kind of custody battle, and it’s no such thing.  It’s about what’s in Charlie’s best interests.  “The authorities aren’t even letting him go home to die” is arguably a rather mendacious way of saying “Charlie really needs the kind of care that can’t be provided at home”.

The article continues: more…

What’s the Point of Professional Ethical Codes?

13 Jun, 17 | by Iain Brassington

For a few reasons, I’ve been thinking a bit over the last few months about professionalism and professional codes.  In fact, that’s the topic that’s attracted most of my attention here since… oooh, ages ago.  I find the idea of a code of professional ethics troubling in many ways, but also fascinating.  And one of the fascinating questions has to do with what they’re for.

They can’t be meant as a particularly useful tool for solving deep moral dilemmas: they’re much too blunt for that, often presuppose too much, and tend to bend to suit the law.  To think that because the relevant professional code enjoins x it follows that x is permissible or right smacks of a simple appeal to authority, and this flies in the face of what it is to be a moral agent in the first place.  But what a professional code of ethics may do is to provide a certain kind of Bolamesque legal defence: if your having done φ attracts a claim that it’s negligent or unreasonable or something like that, being able to point out that your professional body endorses φ-ing will help you out.  But professional ethics, and what counts as professional discipline, stretches way beyond that.  For example, instances of workplace bullying can be matters of great professional and ethical import, but it’s not at all obvious that the law should be involved.

There’s a range of reasons why someone’s behaviour might be of professional ethical concern.  Perhaps the most obvious is a concern for public protection.  If someone has been found to have behaved in a way that endangers third parties, then the profession may well want to intervene.  For example: if an HCP knew herself to be a carrier of a transmissible disease but did nothing about it, this would quite plausibly be a matter for professional concern, irrespective of what the law says, or whether anyone had been harmed.  The same would apply if we discovered that a surgeon was unable to function without a large brandy to settle his nerves.  But we’d want to make sure that the professional concern was for the right thing.  It would be inappropriate to sanction someone merely for being a carrier, or for being alcohol dependent.  (Along these lines, it seems defensible to me not to have suspended Martin Royle, a surgeon who falsified prescriptions in order to satisfy his addiction to painkillers.  It’s better to treat an addiction than to punish it.)

A second reason is for the sake of collegiality.  For example, there’s nothing illegal about being  a racist, and there probably shouldn’t be; but it is at the very best distasteful.  Imagine you discover that your colleague is an abiding racist.  It is not hard to see how this knowledge might have implications for your professional interactions – especially (but not only) if you’re a member of one of the groups to which your colleague has a demeaning attitude.  (Indeed, the same might be true if he had used to be a racist, but had changed his attitudes.  I suspect that that’s the sort of thing that might have a fairly long half-life.)  Now imagine that your colleague is a frequent attendee at rallies, held in support of racist policies, that are often associated with threatening behaviour: he doesn’t just dislike some people, but is visibly hostile to them.  That, it seems to me, might be a matter of professional concern, because it will predictably make the working environment much more difficult.  It would be harder to trust this colleague (again, especially but not only if you happen to be a member of one of the groups he hates).  That might be sufficient to raise worries about whether he’s a fit person to do the job in question.  Again, though, there’d have to be a proviso: there is a difference between one’s professional abilities and one’s personal attitudes, and between how one behaves in and out of work.  A surgeon is a surgeon for all that.  So there is a genuine problem here concerning what to do.  But a genuine problem means that there is a cause for concern.

(Indirectly, this second concern might have something to do with public safety, too.  A surgical team in which people are uncomfortable working along side each other may be one in which patient outcomes are affected.  But that would be a further matter, and would not have to collapse into the safety point.  Imagine that the profession is accountancy: it might still be that members of the group would simply be intolerably uncomfortable working alongside their racist colleague, although the audit will still be done perfectly well.  The same will apply in any profession.)

But there’s another factor, which is the status of the profession.  To what extent are professional ethics codes and bodies that judge professionalism in the business of protecting themselves and their high social status?  A couple of recent cases raises that question. more…

Law Changes and Slippery Slopes

13 Apr, 17 | by Iain Brassington

Apparently, there was a TV programme in Australia the other day in which a there was a discussion of assisted dying.  It got reported in The Guardian, largely on the basis that an 81-year-old audience member kept calling Margaret Somerville “darling” and then got mildly sweary.  I’ve only seen those clips from the programme that are linked in the Graun‘s report, so I’m not going to comment on the tone of the debate in particular.  Rather, I’m interested in one of the responses to the programme, from Xavier Symons, writing in The Conversation.

Symons takes the opportunity to unpick the idea of a slippery slope argument – in this case, the claim that allowing some forms of assisted dying will commit us to allowing… well, that’s open-ended, but it’s sufficient to say that it’d be terrible.  We’d want to avoid terrible things; therefore, the argument goes, we shouldn’t allow any of it.  This is well-worn stuff in the seminar room, but it’s a mode of argument that refuses to die.  Quite correctly, Symons points out that

there is a need for empirical evidence or sound inferential reasoning to support the claim that event B will necessarily (or probably) follow on from event A.  Without this evidence, the argument is invalid. I can’t just claim, for example, that the legalisation of medicinal marijuana leads to the legalisation of ice – I need to show some empirical or logical connection between the two.

So far, so standard.  (I’d say “unsound” rather than “invalid”, because the validity of an argument doesn’t depend on its evidence – or, at least, not in the same way; but that’s a small matter.)  He then makes another move, which is a bit more interesting:

But (and it’s a big but) there is such a thing as a good and valid slippery slope argument.  A good slippery slope argument demonstrates a causal or probable relationship between event A and B, such that event B can legitimately be expected to occur if event A is allowed to occur. […] There are, nevertheless, compelling empirical and logical slippery slope arguments available to defend more modest claims about the “normalisation” of assisted dying.

Is this correct? more…

A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

more…

LECTURE: Rebalancing Empowerment and Protection: Evolving Legal Frameworks for Impaired Capacity

28 Nov, 16 | by Iain Brassington

Thursday 8 December 2016, 18:00 – 19:00

UCL Gustave Tuck Lecture Theatre, Wilkins Building, Gower Street, London WC1E 6BT

Speaker: Professor Mary Donnelly (University College Cork)
Chair: TBC
Accreditation: This event is accredited with 1 CPD hour with the SRA and BSB

Admission: Free, Registration required (here)

 

The past decade has seen a notable evolution in the normative context for law’s response to people with impaired capacity. Driven by a range of factors, including greater recognition of human rights (perhaps most notably through the Convention on the Rights of Persons with Disabilities) and better empirical understandings, a rhetoric of inclusion and empowerment has replaced traditional approaches centred on control and protection.  Law reform projects in various jurisdictions (Australia, Canada, Ireland, Northern Ireland) have attempted to develop legislative frameworks to give effect to these emerging norms. Yet there is also another narrative. Concerns are expressed (perhaps most commonly by frontline professionals: healthcare professionals, lawyers, social workers and sometimes by family members of people with impaired capacity) that something important may be lost where there is a devaluation of protective norms. There is also a dissonance between the abstract ideals of human rights on the one hand and on the other, the complex corporeal, economic, family, phenomenological and social context within which people with impaired capacity, and those who care for/about them, live.

Tensions between empowerment and protection norms and between abstract, rights-based and contextual, evidence-based policy drivers are inevitable by-products of law’s evolution and they play a necessary role in the development of the law in this area. Rebalancing is a process and not a once-off event. And, of course, as revealed by even a minimal consideration of earlier legal responses to impaired capacity, there is a good deal of room for evolutionary wrong-turns and for unexpected and undesirable consequences. Placing current debates about how law should respond to impaired capacity within an evolutionary context, this paper identifies and evaluates the range of ways in which contemporary tensions may be resolved.

About the speaker:

Mary Donnelly is a Professor in the Law School, University College Cork. Her books include Consent: Bridging the Gap Between Doctor and Patient (Cork: Cork University Press, 2002); Healthcare Decision-Making and the Law: Autonomy, Capacity and the Limits of Liberalism (Cambridge: Cambridge University Press, 2010) and The Law of Credit and Security (Dublin: Round Hall Thomson Reuters, 2011; 2nd ed, 2015) and she is co-author of End-of-Life Care: Ethics and Law (Cork University Press, 2011) and Consumer Law: Rights and Regulation (Dublin: Round Hall Thomson Reuters, 2014) and co-editor of Ethical and Legal Debates in Irish Healthcare: Confronting Complexities (Manchester University Press, 2016).

She has collaborated on projects funded by the European Commission, the Irish Research Council for the Humanities and Social Sciences, the National Children’s Office and the Irish Hospice Foundation and has acted as consultant for public agencies and legal firms.  She is/has been a member of the Expert Group to review the Mental Health Act 2001 and of the HSE National Consent Advisory Group and the HSE National Assisted Decision Making Steering Group.

Are Single Men in the UK Entitled to have a Baby using Fertility Treatment?

22 Nov, 16 | by Iain Brassington

Guest post by Atina Krajewska, Rachel Cahill-O’Callaghan, and Melanie Fellowes

The World Health Organisation is currently considering a change in the definition of infertility according to which, it has been reported, “single men and women without medical issues [would] be classed as ‘infertile’, if they do not have children but want to become a parent.”  Although the WHO has not to date officially confirmed these reports, the possible changes have been considered controversial and provoked heated responses in other UK media.  One of the main points of contention was the possibility of opening fertility treatment to single men.  Before we engage in discussions about the new WHO standards concerning fertility treatment, which – it should be stressed – have not yet been officially announced or adopted, it is important to shed some light on the legal situation of single men in the UK, who wish to become single fathers using fertility treatment.   This entry is aiming to exactly that.  (In respect of single women, see this.)

A single man wishing to have a child will have to use a surrogate and will either use the surrogate’s ovum and his sperm, or she will carry an embryo created by his sperm and a donated egg.  The HFE Act 1990 (as amended by the HFEA 2008) and the Surrogacy Arrangements Act 1985 will therefore be the two most relevant pieces of legislation governing the area.  Neither of these Acts expressly mentions single men as a separate class of patients.

The Human Fertilisation and Embryology Act 1990 has never prevented single persons from accessing ARTs.  The Act and the Human Fertilisation and Embryology Authority’s 8th Code of Practice refers to a “woman”, a “couple”, and an “individual”, and the latter opens up the possibility for single men to access treatment.  Consequently, should they be adopted, the new WHO guidelines would not affect the fundamental principles of the HFE Act 1990 (2008), which does not engage with questions of rationing and access to publicly funded treatment.  It is also unlikely that it could affect the interpretation of these provisions of the Act that may be seen as creating invisible obstacles for single persons.  (More here and here.)

A look at the 2008 HFE Act suggests that the legal position of single men is arguably weaker than that of single women (excluding women using surrogacy, who seem to constitute the most vulnerable and least protected group of patients).  The amended version of s 13 (5) of the HFE Act 2008, which replaced “the need for a father” with the “need for supporting parenting” in the welfare of the child assessment, refers only to a woman and is now silent about the man.  This change was rightly welcomed as enhancing equality and promoting alternative family structures in the context of ARTs.  However, it has paradoxically weakened the position of single men.  A surrogate woman who gives birth to a child would be recognised as a legal mother under the HFE Act and would only need to show evidence of a supportive network of family and friends.  At the same time, the wording of s 13(5) weakens the claims of single men wishing to become parents by accessing fertility treatment.

The biggest challenge single men face in this context is the establishment of legal parenthood.  Interestingly, the only situation in which a single man could be regarded as the legal father of the child would occur when he is the biological father, the surrogate mother is unmarried and not in a civil partnership, and no one chooses otherwise.  (This rule is inferred from s 42, 43, and 44 HFE Act 2008, although none of these provisions mentions single men.)  The realities of surrogacy will rarely allow for such a set of circumstances to occur.  On top of this, the single male might also struggle to satisfy the requirement under s. 54(8) HFEA 2008 that no money or other benefit has been given or received for surrogacy, as the majority of arrangements will involve third parties who are not family members, and will usually involve a financial component.  This is one of the reasons why most surrogacy arrangements involving single men will take place abroad.  In these cases, the single man whose child was born as a result of a surrogacy arrangement through IVF/IUI will have to apply for a parental order or adoption. more…

Natal Nativism

12 Oct, 16 | by Iain Brassington

Scene: the boardroom of a large NHS Trust, somewhere in England.

“And so that brings us neatly to the last item on the agenda: passport checks for pregnant women who want a checkup.  The thing is, you see, that it turns out that we’ve been providing obstetric care to some women who aren’t actually UK citizens.  And, clearly, that has to stop.”
“To stop?”
“Well, maybe not stop.  But you know what I mean.  We can’t go providing treatment to anyone who comes knocking at the door!  Why, we’d have a queue from here to Timbuktu, not to mention the cost!”
“Oh, quite.  No, I quite agree that we can’t be the world’s supplier of healthcare.”
“No.  So that’s settled, then.  No more obstetric services to women who can’t demonstrate their eligibility.”
“Hmmmm.”
“You don’t look convinced.  What’s the problem?  These women aren’t eligible.”
“Well, no.  But… well, look.  Remember when Dr Smith retired, and when Dr Jones got that transfer to work in the Inner Hebrides?”
“All too well.  Two great losses to the Trust.  What’s your point?”
“Well, I seem to remember that we pooled together to buy them nice leaving presents.”
“We did.  It was the least we could do.”
“I agree.  But, you see, the thing is, they weren’t actually entitled to them.  If you see what I mean.”
“I’m not sure I follow.”
“No.  Well, you see, the thing is, we bought them those presents, and gave them to them, because it’s the decent thing to do.  There’s no rule that says that we have to buy them.  They wouldn’t have been wronged if we hadn’t.”
“Yeeeeeeessssss…  I mean, no.  But yes.”
“But we gave them the presents anyway.  Because the rules set out what’s minimially decent.  Not an upper limit.”
“Yeeeeeesssss…”
“Well, you see, I was just wondering: might the same apply in other contexts?  Allowing for the obvious differences, of course.”
“You’re losing me again.”
“I thought I might be.  Well, you see, it’s like this.  We’ve been providing treatment to pregnant women without paying attention to whether they’re entitled by the strict letter of the law.  And that law specifies who is entitled to treatment.  But that doesn’t necessarily impose any exclusions.  You see, I wonder if by getting bogged down in the rules, we might… um…”
“Might what?”
“Well, you see, the thing is…”
“Go on…”
“Look: we might end up looking like utter shits.”

Wholly fictional, this, of course.  No such conversation took place.  On the other hand, as reported by the Beeb, here’s a document from St George’s University NHS Trust.  Skip to p80: more…

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