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Shameless self-publicity

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…

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. 

Writers Whose Expertise is Deplorably Low

4 Jun, 16 | by Iain Brassington

Something popped up on my twitter feed the other day: this document from Oxford’s philosophy department.  (I’m not sure quite what it is.  Brochure?  In-house magazine?  Dunno.  It doesn’t really matter, though.)  In it, there’s a striking passage from Jeff McMahan’s piece on practical ethics:

Even though what is variously referred to as ‘practical ethics’ or ‘applied ethics’ is now universally recognized as a legitimate area of philosophy, it is still regarded by some philosophers as a ghetto within the broader 
area of moral philosophy.  This view is in one way warranted, as there is much work in such sub-domains of practical ethics as bioethics and business ethics that is done by writers whose expertise is in medicine, health policy, business, or some area other than moral philosophy, and whose standards of rigour in moral argument
are deplorably low.  These writers also tend
 to have only a superficial understanding of normative ethics.  Yet reasoning in practical ethics cannot be competently done without sustained engagement with theoretical issues
in normative ethics.  Indeed, Derek Parfit believes that normative and practical ethics are so closely interconnected that it is potentially misleading even to distinguish between them.  In his view, the only significant distinction is between ethics and metaethics, and even that distinction is not sharp.  [emphasis mine]

It’s a common complaint among medical ethicists who come from a philosophical background that non-philosophers are (a) not as good at philosophy, (b) doing medical ethics wrong, (c) taking over.  All right: there’s an element of hyperbole in my description of that complaint, but the general picture is probably recognisable.  And I don’t doubt that there’ll be philosophers grumbling along those lines at the IAB in Edinburgh in a couple of weeks.  There’s a good chance that I’ll be among them.

There’s a lot going on in McMahan’s piece, and his basic claim is, I suppose, open to a claim that, being a philosopher, he would say that, wouldn’t he?  But even if that claim is warranted, it doesn’t follow that it’s false.  And it probably isn’t false.  There is some very low-quality argument throughout bioethics (and, from what I remember from my time teaching it, business ethics) – more particularly, in the medical ethics branch of bioethics, and more particularly still, in the clinical ethics sub-branch.  Obviously, I’m not going to pick out any examples here, but many of us could point to papers that have been simply not very good, because the standard of philosophy was low, without too much difficulty.  Often, these are papers we’ve peer-reviewed, and that haven’t seen the light of day.  But sometimes they do get published, and sometimes they get given at conferences.  I’ve known people who make a point of trying to find the worst papers on offer at a given conference, just for the devilry.

It doesn’t take too much work to come up with the common problems: a tendency to leap to normative conclusions based on the findings of surveys, or empirical or sociological work; value-laden language allowing conclusions to be smuggled into the premises of arguments; appeals to vague and – at best – contentious terms like dignity or professionalism; appeals to nostrums about informed consent; cultural difference used as an ill-fitting mask for special pleading; moral theories being chosen according to whether they generate the desired conclusion; and so on.  Within our field, my guess is that appeals to professional or legal guidelines as the solutions to moral problems is a common fallacy.  Not so long ago, Julian noted that

[t]he moralists appear to be winning.  They slavishly appeal to codes, such as the Declaration of Helsinki.  Such documents are useful and represent the distillation of the views of reasonable people.  Still, they do not represent the final word and in many cases are philosophically naïve.

Bluntly: yes, the WMA or the BMA or the law or whatever might say that you ought to do x; and that gives a reason to to x inasmuch as that one has a reason to obey the law and so on.  But it’s unlikely that it’s a sufficient reason; it remains open to us always to ask what those institutions should say.  Suppose they changed their minds and insisted tomorrow that we should do the opposite of x: would we just shrug and get on with the business of undoing what we did today?

And yet…  The complaint about poor argument is not straightforward, for a couple of reasons. more…

Autism, Mental Illness, Euthanasia and the WaPo

5 Mar, 16 | by Iain Brassington

There was a piece in the Washington Post the other day with a striking headline: Where the Prescription for Autism can be Death.

Normally, if we’re saying that the prescription for x is y, we mean to say that y is being suggested as a treatment for x.  Painkillers are the prescription for a bad back, a steroid cream the prescription for eczema, and so on.  Even if you find that phrasing a bit clunky, “prescription” implies the recommendation of a medical expert.  On that basis, the implication here is that somewhere in the world, doctors are seeing patients, diagnosing autism, and saying, “I wonder if the best thing would be to kill you”.  That would be uiruite a Big Deal.

The place in question is Holland.  But a quick look at the article shows – surprise, surprise – nothing of what’s hinted at in the headline.  Here’s the opening few sentences, edited slightly for formatting:

In early childhood, the Dutch psychiatric patient known as 2014-77 suffered neglect and abuse.  When he was about 10, doctors diagnosed him with autism.  For approximately two decades thereafter, he was in and out of treatment and made repeated suicide attempts.  He suffered terribly, doctors later observed, from his inability to form relationships: “He responded to matters in a spontaneous and intense, sometimes even extreme, way. This led to problems.”

A few years ago, 2014-77 asked a psychiatrist to end his life.  In the Netherlands, doctors may perform euthanasia — not only for terminal physical illness but also upon the “voluntary and well-considered” request of those suffering “unbearably” from incurable mental conditions.
The doctor declined, citing his belief that the case was treatable, as well as his own moral qualms.  But he did transmit the request to colleagues, as Dutch norms require.  They treated 2014-77 for one more year, determined his case was, indeed, hopeless and, in due course, administered a fatal dose of drugs.  Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014.

So, then, it’s a story about a man, who happened to be autistic, and who asked a psychiatrist for euthanasia.  After a little to-ing and fro-ing, that request was granted.  There is no reason to believe that this was a case of death being prescribed for autism.  It’s just that he happened to be autistic and to want to die, and a prescription for assistance was provided.  Phrasing is important.

Dutch law on assisted dying is famously liberal; in considering the permissibility of euthanasia for psychiatric as well as somatic illnesses, it is in the minority of the minority of jurisdictions that consider the permissibility of any euthanasia.  I have addressed the question of psychological suffering in relation to euthanasia elsewhere, and shan’t rehearse the details here; suffice it to say, I don’t see any reason in particular to think that mental illness and physical illness should be treated all that differently in principle: more…

My One Appearance in “Cosmo”…

28 Apr, 15 | by Iain Brassington

… and they go and screw it up.

A few weeks (months?) ago, I got a call from Cosmopolitan to ask if I’d talk about home-testing kits for genetics – stuff like what 23andMe offers.  We talked, and I like to think that I said something useful… and promptly forgot all about it, until just now, when the University of Manchester press office sent me a link to this: a story about HIV self-testing kits in the UK.

It’s a piece that quotes me.  It quotes me from that interview I did about genetic – genetic! – tests:

Iain Brassington, Healthcare Ethics professor at the University of Manchester told Cosmo Body:

“People invest a lot in genetic information and it could have a serious psychological impact. Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.”

Can you see the problem here?

Apart from the fact that I’m not, and am unlikely soon to be, a Professor, I mean?

OK: for clarity’s sake (and just in case there are any Cosmo readers who’ve drifted here): genetic tests and HIV tests are VERY DIFFERENT THINGS, and raise CORRESPONDINGLY DIFFERENT PROBLEMS.  I don’t think that HIV is a genetic condition.  Only idiots think that.  Some of the problems with one might well be problems with the other.  But we can’t leap between the two so easily.  I don’t know what I think about home HIV tests; I’ve not thought about them much, and noone’s asked me to have an opionion on them yet.  THIS QUOTATION MAKES ME LOOK LIKE AN IDIOT.

Also, they put words in my mouth.  I can’t remember what I said, but I doubt it’d’ve been anything as fatuous as “Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.”  That’s simply not the kind of thing I say.

Yes, I’m posting here shamelessly, because I don’t want that particular piece to appear if people Google me without some kind of balancing act.  And I’m posting a screengrab just below the fold for posterity’s sake, just in case Cosmo deletes the page.

more…

This could get Personal

5 Dec, 14 | by Iain Brassington

And so 23andMe has launched in the UK.

For those not familiar with it, 23andMe allows individuals to swab themselves and have their genome analysed, at a cost of £125. The company is offering to generate a report covering about a hundred traits, giving information on a range of potentially important to fun things: the list includes tests for the presence or absence of inherited conditions such as Tay-Sachs and Beta Thalassemia; risk factors relating to things like Alzheimer’s; how much DNA you have in common with Neanderthals; and earwax type.

To be honest, I’d’ve thought that by the time you’ve got £125 to spend on a test like this, you’d probably know all you’d ever want to know about your earwax, but… well, apparently there’s more.  Joy.

Anyway: BBC Breakfast invited me to witter on about it the other day.  I only got a couple of minutes, and so didn’t get to say much; shamelessly, I’m going to think aloud a little bit here.  My basic starting point is that it’s hard to see why the test per se is too big a problem: all else being equal, who would begrudge a person information about himself?  All the same, I think that there are questions that are probably worth asking.  (NB: in what follows, whenever I mention 23andMe, the point should be taken to cover any company offering a similar service.)  So, in no particular order… more…

Saatchi Bill – Update

28 Oct, 14 | by Iain Brassington

Damn. Damn, damn, damn.

It turns out that the version of the Medical Innovation Bill about which I wrote this morning isn’t the most recent: the most recent version is available here.  Naïvely, I’d assumed that the government would make sure the latest version was the easiest to find.  Silly me.

Here’s the updated version of §1(3): it says that the process of deciding whether to use an unorthodox treatment

must include—

(a) consultation with appropriately qualified colleagues, including any relevant multi-disciplinary team;

(b) notification in advance to the doctor’s responsible officer;

(c) consideration of any opinions or requests expressed by or on behalf of the patient;

(d) obtaining any consents required by law; and

(e) consideration of all matters that appear to the doctor to be reasonably necessary to be considered in order to reach a clinical judgment, including assessment and comparison of the actual or probable risks and consequences of different treatments.

So it is a bit better – it seems to take out the explicit “ask your mates” line.

However, it still doesn’t say how medics ought to weigh these criteria, or what counts as an appropriately qualified colleague.  So, on the face of it, our homeopath-oncologist could go to a “qualified” homeopath.  Or he could go to an oncologist, get told he’s a nutter, make a mental note of that, and decide that that’s quite enough consultation and that he’s still happy to try homeopathy anyway.

So it’s still a crappy piece of legislation.  And it still enjoys government support.  Which does, I suppose, give me an excuse to post this:

Many thanks to Sofia for the gentle correction about the law.

An Innovation Too Far?

28 Oct, 14 | by Iain Brassington

NB – Update/ erratum here.  Ooops.

One of the things I’ve been doing since I last posted here has involved me looking at the Medical Innovation Bill – the so-called “Saatchi Bill”, after its titular sponsor.  Partly, I got interested out of necessity – Radio 4 invited me to go on to the Sunday programme to talk about it, and so I had to do some reading up pretty quickly.  (It wasn’t a classic performance, I admit; I wasn’t on top form, and it was live.  Noone swore, and noone died, but that’s about the best that can be said.)

It’s easy to see the appeal of the Bill: drugs can take ages to come to market, and off-label use can take a hell of a long time to get approval, and all the rest of it – and all the while, people are suffering and/ or dying.  It’s reasonable enough to want to do something to ameliorate the situation; and if there’s anecdotal evidence that something might work, or if a medic has a brainwave suggesting that drug D might prove useful for condition C – well, given all that, it’s perfectly understandable why we might want the law to provide some protection to said medic.  The sum of human knowledge will grow, people will get better, and it’s raindrops on roses and whiskers on kittens all the way; the Government seems satisfied that all’s well.  Accordingly, the Bill sets out to “encourage responsible innovation in medical treatment (and accordingly to deter innovation which is not responsible)” – that’s from §1(1) – and it’s main point is, according to §1(2), to ensure that

It is not negligent for a doctor to depart from the existing range of accepted medical treatments for a condition, in the circumstances set out in subsection (3), if the decision to do so is taken responsibly.

Accordingly, §1(3) outlines that

[t]hose circumstances are where, in the doctor’s opinion—

(a) it is unclear whether the medical treatment that the doctor proposes to carry out has or would have the support of a responsible body of medical opinion, or

(b) the proposed treatment does not or would not have such support.

So far so good.  Time to break out the bright copper kettles and warm woollen mittens*, then?  Not so fast. more…

What should we Think about Belgium’s Child Euthanasia Law?

15 Feb, 14 | by Iain Brassington

With any luck, the nuts real-world work schedule of the past few months* will begin to ease in a few days, so I should be able to start blogging more frequently soon; but I thought I’d take a moment out from writing jurisprudence lectures to do some thinking out loud about Belgium’s recent change to its euthanasia law, which legalises it for children.  This is partly because it’s interesting in its own right, and partly because I’m debating it on Radio 4’s Sunday programme this week.  I’ve drafted this post before the interview’s recorded, but I’m not publishing it until after (though before the broadcast); let’s see how my thoughts here pan out on air…**

For reference, the text of the law is available here in French, and here in Dutch – thank goodness for A/S levels.  A decent précis provided by AP is hosted here; and Christian Munthe has an unofficial translation here.

OK: so, what should we think about it? more…

Genes and Confidentiality: Tricky!*

22 Nov, 13 | by Iain Brassington

A couple of weeks ago, the D–ly M–l** asked me to comment on the Personal Genome Project‘s call for 100 000 volunteers who’d be willing to have their DNA sequenced so that it could be correlated with their health records and used as a tool for research.  As it happens, my peals of wisdom never made it into print, but here’s an expanded version of the things I said.

First up, this project is superficially similar to that undertaken by the UK Biobank.  The idea behind both is that, since many illnesses have a genetic component to them, understanding those illnesses fully will require doing genetic research.  Sometimes that will be on cells in a lab; sometimes it’ll be population surveys.  Often, the idea will be to learn as much as we can about individuals’ genomes, and then to keep track of their health over a prolonged period.  If, across the population, we notice a correlation between a given gene and a given illness, the hope would be that we could work out more effective treatments.  Insofar as participating in this project might help with research into things like cancer, it’s tempting to think that it’s admirable – some even argue that participation in medical research is a moral duty (though others disagree: to and fro and to and fro***; cf this and this and this).

However, there are also moral problems to consider. more…

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