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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…

Should Doctors Perform “Minor” Forms of Female Genital Mutilation (FGM) as a Compromise to Respect Culture?

25 Feb, 16 | by bearp

by Brian D. Earp / (@briandavidearp), with a separate guest post by Robert Darby

A small surgical “nick” to a girl’s clitoris or other purportedly minimalist procedures on the vulvae of young women and girls should be legally permitted, argue two gynecologists this week in the Journal of Medical Ethics. Their proposal is offered as a “compromise” solution to the vexed issue of so-called female genital cutting or mutilation (FGM).

According to the authors, Kavita Shah Arora and Allan J. Jacobs, legally restricting even “minor” forms of non-therapeutic, non-consensual female genital cutting is “culturally insensitive and supremacist and discriminatory towards women.” Discriminatory, apparently, because non-therapeutic, non-consensual male genital cutting (a.k.a. male circumcision) is widely tolerated in Western societies; why shouldn’t women and girls be allowed to participate in — or be subjected to — analogous cultural rites that are important to members of their own groups?

I take issue with the authors’ proposal. In a commentary published in response to their piece (currently available “online first” along with two other commentaries: see here and here), I argue that to allow supposedly minimalist female genital cutting procedures before an age of consent in Western societies would result in numerous ethical, legal, political, regulatory, medical, and sexual problems, creating a fiasco. So problematic, in my view, is the proposal by Arora and Jacobs, that I have prepared a separate online supplementary appendix to expand upon my published commentary, in which I address each of their specific claims and arguments one by one: see here.

Rather than continuing to tolerate childhood male circumcision, and using this as a benchmark for allowing supposedly “minor” forms of FGM, I argue that we should instead be moving in the opposite direction. In other words, I suggest that the time has come to consider a less tolerant stance toward both procedures. As I write in my piece:

“Ultimately, I suggest that children of whatever sex or gender should be free from having healthy parts of their most intimate sexual organs either damaged or removed, before they can understand what is at stake in such an intervention and agree to it themselves.”

In the initial flurry of media coverage of the controversial new proposal by Arora and Jacobs, some commentators have attempted to drive a wedge between male and female forms of non-therapeutic genital alteration by referring to supposedly distinct symbolic meanings (FGM is “all about” controlling the sexuality of women, according to this view, whereas male circumcision is claimed not to be rooted in norms of sexual control), as well as health implications (FGM “has no health benefits,” it is claimed, whereas male circumcision does or at least may).

However, both of these claims are misleading at best, and at worst, downright false, as I (among other scholars who specialize in this area) have argued at length in other contexts: see also here, here, and here. For a short, reader-friendly introduction to the empirical and conceptual problems with these oft-repeated tropes, please see my essay in Aeon magazine, “Boys and Girls Alike.”

This is not the place to re-state my arguments. Instead, interested readers can explore the links above and reach their own conclusions. What I would like to do now is turn to an interesting new commentary on the proposal by Arora and Jacobs by Dr. Robert Darby, a medical historian and expert in male and female genital cutting rituals as they take place across a range of social contexts. His commentary is published below as a guest post on this blog. Please note that its contents should be taken to reflect the views of Dr. Darby, and not necessarily those of the Journal of Medical Ethics, its editors, or anyone else. 

Male and Female Genital Cutting: A Sex-Neutral Approach?

By Robert Darby, Ph.D.

Two contrasting views on female genital cutting (FGC) have been aired in recent weeks. Writing in the Journal of Medical Ethics, two American obstetricians, Kavita Arora and Allan Jacobs, argue that Western societies should tolerate – and doctors should perform – purportedly mild forms of non-therapeutic genital cutting on female infants and girls if the parents so request. In contrast, Ms. Meiwita Budiharsana, a lecturer in public health in Indonesia – where such forms of FGC are very common and increasingly medicalized – argues that the authorities should discourage such practices and that medical personnel should not perform them.

The situation seems rich in paradox. Two doctors from a society that has traditionally abhorred (and in fact criminalised) any form of FGC, believe that certain mild forms should be permitted. At the same time, a health expert from a society where certain mild forms of FGC are the norm believes that this is wrong and that such practices should be opposed.

What is going on here?

In this commentary I would like to focus primarily on the short opinion piece from Ms. Budiharsana. This is partly because Arora and Jacobs’s paper has already received both thoughtful peer commentary as well as heated discussion in the media (and is likely to receive much more); and partly because I think that the paper by Ms. Budiharsana in itself provides an interesting commentary on Arora and Jacobs’s controversial proposal.

more…

A Tool to Help Address Key Ethical Issues in Research

22 Feb, 16 | by BMJ

Guest post by Rebecca H. Li and Holly Fernandez Lynch

One of the most important responsibilities of a clinical project lead at a biotech company or an academic research team is to generate clinical trial protocols. The protocol dictates how a trial will be conducted and details background information on prior research, scientific objectives, study rationale, research methodology and design, participant eligibility criteria, anticipated risks and benefits, how adverse events will be handled, plans for statistical analysis, and other topics. Many protocol authors use as a starting point a “standardised” protocol template from their funder or institution. These templates often provide standard language, and sections for customisation, sometimes with various “pick-and-choose” options based on the nature of the research. They inevitably cover each of the key topics listed above, but often fail to include ethical principles and considerations beyond the regulatory requirement of informed consent. Indeed, the process of protocol writing has traditionally focused on scientific detail, with ethical analysis often left to institutional review boards (IRBs) and research ethics committees (RECs); unfortunately, robust discussion of specific ethical issues is often absent from clinical trial protocols.

When IRBs and RECs convene to review protocols, they are expected to evaluate whether the study will adequately protect enrolled participants. When the protocol fails to address potential ethical concerns explicitly, reviewers are left to speculate: did the investigator consider the concern, but dismiss it as not relevant in this particular context; did the investigator fail to understand the concern; does the investigator have an appropriate plan in place to resolve the concern, but has left it unstated in the protocol? This uncertainty can contribute to delays as reviewers debate among themselves, and can require lengthy back-and-forth with researchers, including series of protocol revisions and re-reviews until clarity is established. In some cases, it may also be that reviewers with less experience or expertise fail to identify an ethical concern that has not been brought to their attention in a protocol. more…

Controversial Views on “FGM”

2 Feb, 16 | by bearp

by Brian D. Earp / (@briandavidearp), with a separate guest post by Matthew Johnson

Even the term is controversial. Female genital mutilation/FGM? Many women from societies that practice such traditional initiation rites find the term offensive. Female genital alteration? But that could refer to a wide range of procedures, including some that might be medically advised. Female circumcision? That’s the term used by many practicing communities—but others think it trivializes harm. Whatever the term, the set of practices called “FGM” by the World Health Organization has been in the media of late.

According to the Guardian, “The number of women and girls in the United States at risk of female genital mutilation has tripled over the last 25 years, according to a government study released on Thursday.” However, “the increase in women at risk in the US [is] wholly a result of rapid growth in the number immigrants” from countries that practice FGM.

In other words, there are apparently no firm data on how many (female) individuals have actually been affected by non-therapeutic genital altering procedures in the United States in recent years: “being at risk” seems to have been defined as “coming from a country where such procedures are known to be performed in some communities.”

But the type and prevalence of “FGM” procedures can vary widely within countries—i.e., they can occur in some communities and/or families but not others—and as Sara Johnsdotter and Birgitta Essén have recently argued, the practice is often relinquished as immigrants begin to acculturate to the so-called West.

So the headline claim that “Genital mutilation risk triples for girls and women in US” should be treated as controversial, in my view—not to mention ripe for being widely misunderstood—pending further, more finely-grained research.

Another controversial view I should highlight comes from a forthcoming paper in the Journal of Medical Ethics, where Kavita S. Arora and Allen J. Jacobs are set to propose that certain “minor” forms of FGM should be tolerated in Western societies. The paper has not yet been published, but my response to it—a piece entitled, “In Defence of Genital Autonomy for Children—is, for some reason, already available online-first. You can read the unabridged version of my paper (with a detailed appendix) by clicking here.

Keep your eyes open for an official announcement from the journal regarding the paper by Arora and Jacobs; I understand that it will be published alongside a commentary from the editors and at least two other dissenting views besides by own.

Finally, let me turn to an essay by Dr. Matthew Johnson of Lancaster University, which will certainly be regarded as controversial by some, but which I think expresses a valuable perspective worth taking seriously (even if one ultimately disagrees with certain aspects of Dr. Johnson’s argument). The essay is published below as a “guest post” on this blog. Please keep in mind that its contents reflect the views of Dr. Johnson, and not necessarily those of the Journal of Medical Ethics, its editors, or anyone else.

Cameron, FGM and Boarding Schools: Empathy and Punishing Parents

by Dr. Matthew Johnson

David Cameron’s declaration that there will be ‘no more’ passive tolerance of Female Genital Mutilation (FGM) comes against the backdrop of the revelation that 1,000 cases of FGM had been recorded in three months this year as part of NHS data collection on the practice. This data collection commenced in April as part of the Government’s eradication drive, and its findings demonstrate the seriousness of the practice. One natural response to the problem is, as Cameron suggests, to call for sterner punishments for practitioners and, indeed, parents who inflict the practice. However, if our concern is to prevent harm, there are many reasons to reject that route and indeed precedents in our treatment of other (different) harmful practices which highlight the deficits in the approach.

more…

Should Junior Doctors Strike?

25 Jan, 16 | by Iain Brassington

Guest Post by Mark Toynbee, Adam Al-Diwani, Joe Clacey and Matthew Broome

[Editor’s note: Events in the real world have moved more quickly than David or I have; the facts of the junior doctors’ strike have moved on since the paper was published and this post submitted.  Still, the matters of principle remain. – IB]

A strike by junior doctors is planned for January 2016 following failure of the last-ditch ACAS (Advisory, Conciliation and Arbitration Service) mediated talks between the BMA and the Department of Health (via NHS Employers) – see media reports here, here, and here.  Industrial Action had previously been planned for December last year but was suspended at the last minute when both sides agreed to the now failed mediation.  The current regrettable position has resulted from over two years of formal negotiations between the BMA and NHS Employers regarding a new junior doctor contract.  The BMA went to its junior doctor members for a mandate for industrial action last autumn as the talks stalled and received an almost unprecedented mandate with 98% indicating they would be prepared to strike.

Subsequently, many well-known figures voiced their concerns about the ethical and practical implications of industrial action (here and here).  Strikes by doctors are not common, with only one example in the UK in the last generation, but far from unprecedented.  The overwhelming recent ballot result raises many interesting issues, foremost among them the ethical legitimacy of industrial action by doctors, specifically junior doctors.

The term ‘junior doctor’ is often misunderstood.  It applies to all doctors from graduation until completion of specialist training – over 50,000 individuals.  Their roles and responsibilities have evolved significantly over many years; their pay and hours have reduced whilst their debts, costs and responsibilities have increased.  The patient-doctor relationship has also changed with increased emphasis on patient involvement and the promotion of autonomy.

We have looked at arguments proposed during previous instances of doctor industrial action, often from this journal (see this, this, and this) and considered them in the current context.  Absolute ethical objections to doctor industrial action appear old-fashioned, especially when applied to junior doctors.  Concerns about harms caused by doctors withdrawing their labour also seem less sustainable in the light of recent evidence than perhaps would be expected.  Indeed, the ethical responsibilities of doctors may require them to take action if they believe patient care, or the well-being of their colleagues’, is being compromised.

So far there has been strong support for the junior doctors from the Consultant bodies of many Trusts, and the Royal Colleges.  The modern NHS asks more of its junior doctors than ever before, placing ever increasing responsibilities on their shoulders, with ever more challenging working conditions.  With industrial action by junior doctors now likely to go ahead, claims that it would be unethical appear to us to be increasingly hard to justify.

Read the paper here.

*Reboot*

25 Jan, 16 | by Iain Brassington

It’s been a while, what with marking and supervising and writing new courses and general faff, but with luck the blog’ll be getting updated a bit more frequently; there’s a couple of guest posts in the queue, the first of which I’ll post later today.  And I’m hoping to restart semi-regular moans of my own ASAP, too.

In the meantime, I’m just going to draw your attention to this paper in the latest issue of the JME, in which Montgomery and Montgomery write about Montgomery.  If that doesn’t give you a deep sense that all is well with the world, you’re dead inside.

Should Doctors Strike?

9 Nov, 15 | by bearp

 

Should doctors strike?

Is it ethical for doctors to go on strike, potentially putting their patients at risk of getting inadequate treatment?

As the BBC reports, ministers and junior doctors are currently “locked in a dispute.” One possible outcome of this disagreement is a physicians’ strike, which raises a number of tricky ethical questions. But before we get into those questions, it might be helpful to take a look at a quick sketch of what the problem is all about (from the BBC article):

Junior doctors’ leaders are objecting to the prospect of a new contract. The government has described the current arrangements as ‘outdated’ and ‘unfair,’ pointing out they were introduced in the 1990s. Ministers drew up plans to change the contract in 2012, but talks broke down last year. The government has indicated it will impose the new contract next year in England. The BMA has responded by initiating the industrial action process. …

The latest information provided by the government, which is the most detailed so far, includes an 11% rise in basic pay for doctors. But that comes at a price. Other elements of the pay package are being curbed.

The prospect of a strike appears to be firmly on the table: “Doctors can take strike action but only if it affects non-emergency care. The last time this happened was during [a] pensions dispute in 2012, but that was the first time such action had been taken for almost 40 years. Doctors still attend work – so they are ready for urgent and emergency cases.”

The Journal of Medical Ethics has tackled this issue before. Writing for the journal in 2013, John Park and Scott Murray gave an analysis of the 2012 “pensions dispute” just mentioned.

Last year in June, British doctors went on strike for the first time since 1975. Amidst a global economic downturn and with many health systems struggling with reduced finances, around the world the issue of public health workers going on strike is a very real one. Almost all doctors will agree that we should always follow the law, but often the law is unclear or does not cover a particular case. Here we must appeal to ethical discussion.

The General Medical Council, in its key guidance document for practising doctors … claims that ‘Good doctors make the care of their patients their first concern.’ Is this true? And if so, how is this relevant to the issue of striking? One year on since the events, we carefully reflect and argue whether it was right for doctors to pursue strike action, and call for greater discussion of ethical issues such as the recent strikes, particularly among younger members of the profession.

In light of the current turmoil, the Journal of Medical Ethics welcomes submissions on the ethics of physicians striking, including papers which build on, critique, or respond to the work of Park and Murray. Their 2013 paper can be accessed here. As Associate Editor Dominic Wilkinson stated in an interview:

In their submissions, authors should focus on ethical questions and put their discussion in the context of ongoing international debate and existing literature. Possible questions include, for example: what is a fair level of remuneration for public sector healthcare workers, including doctors? Should all doctors be paid equally? Should antisocial hours be rewarded financially? In a financially constrained environment, should doctors’ pay go down in order to protect funding for health care provision?

Papers can be submitted to the Journal of Medical Ethics here. Author instructions are here.

The Journal of Medical Ethics remains the top-ranked journal in bioethics for 2015 according to Google Scholar Metrics, with an impact factor of 1.511 and an h5-index of 28. We look forward to seeing your submissions.

Check out the current issue by clicking here.

Flibanserin and Regulatory Failure

25 Sep, 15 | by Iain Brassington

Guest Post by Adriane Fugh-Berman

On August 18th, 2015, the FDA approved flibanserin (brand name Addyi), a purported aphrodisiac that can drop blood pressure so precipitously that users sometimes pass out and require medical intervention to regain consciousness.  The labelling for flibanserin indicates that it is for:

the treatment of premenopausal women with acquired, generalized hypoactive sexual desire disorder (HSDD), as characterized by low sexual desire that causes marked distress or interpersonal difficulty and is NOT due to:

• A co-existing medical or psychiatric condition,

• Problems within the relationship, or

• The effects of a medication or other drug substance.

Focus for a moment on “Low sexual desire that causes marked distress or interpersonal difficulty”.  So a woman upset by a belittling spouse who wants sex more often than she does is eligible for a prescription drug?  It gives a whole new meaning to the term “drugs of abuse.”  Note that even if the putative patient isn’t distressed, she is still eligible for being drugged if her partner is creating interpersonal difficulty.  Here’s a thought – why not sedate him instead?

Not every partner is a jerk, and there are certainly women distressed by loss of libido, but flibanserin isn’t the answer for these women either.  As an aphrodisiac, it’s no great shakes; its predominant mechanism may simply be sedation.  Flibanserin increased “sexually satisfying events” by less than one event a month (the event, by the way, need include neither an orgasm nor a partner).

The labeling of flibanserin reveals the absurdity of this “disease” and its treatment. more…

Putting a Price on Empathy

12 Aug, 15 | by BMJ

Guest Post by Sarah Carter

My paper is another to add to the ever-increasing number of articles about moral (bio)enhancement – but why is this issue so important?  To take a cynical view: if we had a pill or injection that could make people more moral, less prone to harming others, and so on, it would likely be very attractive to governments (perhaps because of real concerns that we’re headed for disaster unless such steps are taken, or simply because it would save on policing and military bills).  So it’s very important to try to get our heads around this subject while it’s still something that’s merely an idea, rather than waiting until it’s something in our medicine cabinets.  This means thinking about and discussing everything from what moral enhancement would actually involve, right through to questioning how it should be distributed, regulated, and even – as my paper addresses – promoted to the public.

Writers such as Persson and Savulescu argue that there is a need to undertake moral bioenhancement as a means to avoid mankind wandering down the path of ultimate harm, but they concede that many people (especially those we might say to be most in need of moral bioenhancement) would be unlikely to undergo it willingly.  In 2014, Vojin Rakic suggested that incentives such as tax breaks, retirement benefits, schooling allowances, and affirmative action policies, should be used as a way to encourage people to undergo moral bioenhancement.  I think that Rakic’s idea, while prima facie sensible and reasonable, simply will not work. This is not due to issues of coercion or social justice that we would normally associate with the use of incentives, but rather because likely public perceptions of moral bioenhancement mean that the use of incentives for this purpose may present a taboo trade-off. more…

How do Medical Students Learn Ethics?

3 Aug, 15 | by Iain Brassington

Guest Post by Carolyn Johnston

How interested are medical students in learning ethics and law? I have met students who have a genuine interest in the issues, who are engaged in teaching sessions and may go on to intercalate in ethics and law. On the other hand some consider that ethics is “just common sense”. They want to know only the legal parameters within which they will go on to practice and do not want to be troubled with a discussion of ethical issues for which there may not be a “correct” answer.

Ethics and law is a core part of the undergraduate medical curriculum and so in order to engage students successfully I need to know whether my teaching materials are relevant, useful and interesting. In 2010 I ran a student selected component in which MBBS Year 2 students created materials for medical ethics and law topics for pre-clinical students which they considered were engaging and relevant, so that students might go further than learning merely to pass exams. One student, Marcus Sorensen, who had managed a design consultancy focusing on web design and development before starting his medical studies, came up with the idea of a website as a platform for ethics materials for King’s students and he created the website http://get-ethical.co.uk.

It was through our ongoing discussions that we identified a lack of information about students’ experiences of learning medical ethics and law, especially outside the classroom environment. more…

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