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How We Feel about Human Cloning

7 Apr, 16 | by BMJ

Guest post by Joshua May

Suppose you desperately want a healthy child to build a family of your own.  As is increasingly common, however, you can’t do it naturally – whether from infertility, a genetic disease you don’t want to pass on, or a non-traditional relationship.  If you seek a genetic connection with the child, there are some limitations to the main alternatives: adoption, surrogacy, and in vitro fertilization.  You may yearn for more options.

How would you feel about cloning?  Take the nucleus of a cell from yourself or a loved one, then put it into an egg that will eventually develop into a baby that shares nearly all the genes of the donor cell.  The resulting baby will simply be a kind of ‘delayed twin’ of the donor.

Most people believe this is immoral.  There’s a bit more support for therapeutic uses that merely create new tissue, for example.  But, at least in the US and UK, people overwhelmingly condemn cloning for the purposes of creating new human lives.  In fact, a recent poll suggests there is little disagreement in America over this issue, where human cloning is among the most widely condemned topics (alongside polygamy and infidelity).

That’s what people think, but how do they feel?  Controversial bioethical issues often generate intense feelings.  Some bioethicists treat cloning in particular as a line in the sand that we mustn’t cross, for fear of sliding down a slippery slope to a dystopia.

Consider Leon Kass, who played a major role in public policy as chair of George W. Bush’s President’s Council on Bioethics.  Kass argues that there is wisdom in repugnance toward human cloning, allowing us to ‘intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear’.  As opposed to mere unease or sadness, Kass and some others have argued that disgust is such a powerful and distinctive emotion that we should take it seriously as a moral guide when deliberating about ethical issues.

An empirical claim lurks.  Such bioethicists assume that people in general share their reaction of repugnance. Besides, if we can uncover the emotional reactions people tend to feel toward disputed moral issues, then we can better understand why they hold the beliefs they do.  Does the prospect of cloning humans make us sick?  Scared?  Sad?  Angry?  Excited?  At ease?

In my paper, I provide some initial evidence that people (at least in the States) feel primarily anxious and curious about human reproductive cloning.  These were the most frequently self-reported negative and positive emotions, not disgust, fear, sadness, anger, excitement, amusement, comfort, or joy. more…

Posted without Comment…

6 Apr, 16 | by Iain Brassington

… except to say that (a) if I could have my time again, I’d retrain as a medic and go to work in one of the developed world’s most dysfunctional healthcare systems:

bi_graphics-overall-physician-pay

(click for bigger)

and (b) I’d be grateful that I’m not a woman:

bi_graphics-male-and-female-doctors-pay-gap

(click for bigger)

(Sourcesourciersourciest.)

Why Brits? Why India?

3 Apr, 16 | by Iain Brassington

Julie Bindel had a piece in The Guardian the other day about India’s surrogate mothers.  It makes for pretty grim reading.  Even if the surrogates are paid, and are paid more than they might otherwise have earned, there’s still a range of problems that the piece makes clear.

For one thing, the background of the surrogates is an important factor.  Bindel writes that

[s]urrogates are paid about £4,500 to rent their wombs at this particular clinic, a huge amount in a country where, in 2012, average monthly earnings stood at $215.

It’s tempting, at first glance, to look at the opportunity to be a surrogate as a good thing in this context: these women are earning, by comparative standards, good money.  But, of course, you have to keep in mind that the standard is comparative.  If your choice is between doing something you wouldn’t otherwise do and penury, doing the thing you wouldn’t otherwise do looks like the better option.  But “better option” doesn’t imply “good option”.  So there’s more to be said there; more questions to be asked.  Choosing x over y because y is more awful doesn’t mean that x isn’t.  It might be a good thing; but it might not be.  There might be economic – structural – coercion.  Choosing to become a surrogate might be a symptom of there being no better alternative.

A related question is this: are the women really making a free choice in offering their reproductive labour even assuming that the terms are economically just?  Possibly not:

I have heard several stories of women being forced or coerced into surrogacy by husbands or even pimps, and ask Mehta if she is aware of this happening.  “Without the husbands’ [of the surrogates] consent we don’t do surrogacy.”

Note (a) the non-denial, and (b) the tacit acceptance that it’s the husband’s decision anyway.  That’s not good.

(In a wholly different context, I’ve recently been reading David Luban’s Lawyers and Justice, and – in a discussion about lawyers cross-examining complainants in rape cases, he makes this point:

([H]ere we have two people who are confronted by powerful institutions from which protection is needed.  The defendant is confronted by the state [that is: in any criminal trial, the defendant does need protection from the power of the state – IB], but the victim is confronted by the millennia-long cultural tradition of patriarchy, which makes the cliché that the victim is on trial true.  From the point of view of classical liberalism, according to which the significant enemy is the state, this cannot matter. But from the point of view of the progressive correction of classical liberalism, any powerful social institution is a threat, including diffuse yet tangible institutions such as patriarchy. (p 151)

(The sentiment would seem to apply here.  A view of human agency that sees liberty as being mainly or only about avoiding state interference is likely to miss all kinds of much more subtle, insidious pressures that are liberty-limiting.  Economic factors are such pressures.  The idea of the wife as property is another.)

I do wonder if readers of this blog might help out with answering one more question, though. more…

Nurses Cannot be Good Catholics

31 Mar, 16 | by BMJ

Guest Post by John Olusegun Adenitire

It seems that if you are a nurse you cannot be a good Catholic.  Or, better: if you want to work as a nurse then you might have to give up some of your religious beliefs.  A relatively recent decision of the UK Supreme Court, the highest court in the country, seems to suggest so.  In a legal decision that made it into the general press (see here), the Supreme Court decided that two Catholic midwives could not refuse to undertake administrative and supervisory tasks connected to the provision of abortions.

To be sure, no one asked the nurses to directly assist in the provision of abortions.  The Abortion Act 1967 says that “No person shall be under any duty … to participate in any treatment authorised by this Act to which he has a conscientious objection.”  The Nurses argued that this provision of the Act should be understood widely.  Not only should they be allowed to refuse to directly assist in abortion services: they should also be entitled to refuse to undertake managerial and supervisory tasks if those were linked to abortion services.  The nurses’ employer was not impressed; neither was the Supreme Court which ruled that the possibility to conscientiously object only related to a ‘hands-on’ capacity in the provision of abortion services.

In a recent paper in the JME (available here) I have argued, albeit only indirectly, that this decision is only half-correct.  Nurses and other medical professionals have a human right to object to the provision of a wide range of services which they deem incompatible with their conscience.  I say that the decision of the Supreme Court is only half-correct because the Court explicitly avoided investigating the possibility of the nurses’ human right to conscientious objection.  Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.  If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.

I realise that by appealing to human rights I am not necessarily making the nurses’ case any more deserving of sympathy that it already is(n’t). more…

Thumbs Up for Privacy

30 Mar, 16 | by Iain Brassington

“Hey, Iain,” says Fran, a Manchester alumna, “What do you make of this?”  I won’t bother rehearsing the whole scenario described in the post, but the dilemma it describes – set out by one Simon Carley – is fairly easily summarised: you work in A&E; a patient is rolled in who’s unconscious; there’s no ID, no medic alert bracelet – in short, nothing to show who the patient is or what their medical history is; but the patient does have an iPhone that uses thumbprints as a security feature.  And it might be that there’s important information that’d be accessible by using the unconscious patient’s thumb to get at it – even if it’s only a family member who might be able to shed some light on the patient’s medical history.

It’s a potentially life-or-death call.  Would it be permissible to hold the phone to the patient’s thumb?

For those who think that privacy is a side-constraint – that is, a moral consideration that should not be violated – the answer will be obvious, and they’ll probably stop reading around about… NOW.  After all, if you’re committed to that kind of view, it’s entirely possible that the question itself won’t make a great deal of sense (tantamount to “Is it OK to do this thing that is plainly not OK?”), or at least not be worth asking.  But I don’t think that privacy is a side-constraint; I’m increasingly of the opinion that privacy is a bit of an iffy concept across the board, for reasons that needn’t detain us here, but that might be implied by at least some of what follows.  In short, I think that privacy is worth taking seriously as a consideration, but it’s almost certainly not trumps.  At the very least, that’s how I shall handle it here.  (Note here that the problem is one of privacy, not – as the OP has it – confidentiality; it’s a question about how to get information, rather than one of what you can do with information volunteered.  A minor quibble, perhaps, but one worth making.)  Even if I’m wrong about privacy in general, the question still seems to be worth asking, if only to confirm that and why it should not be violated. more…

The Curious Case of Informed Consent for Egg Donation

17 Mar, 16 | by BMJ

Guest Post by Alana Rose Cattapan

As Michael Dunn writes in a recent editorial for the JME, “no medical ethicist worth their salt would deny that consent is a foundational concept in contemporary medical ethics,” and it is an extraordinary understatement to say that much ink has been spilled on the topic. The spaces between consent in theory and in practice is the subject of Dunn’s editorial, where he describes the ways that scholarship about consent fails, at times, to account for the messiness of the real-life process.

Obtaining consent for egg donation is a particularly messy endeavour. We still know relatively little about the long term effects of egg donation, and donors are sometimes seen as secondary players while the recipient of the eggs – the woman carrying a pregnancy and having a child – is viewed as the primary patient. Like other corporeal donations – blood, organ, bone marrow – egg donation presents a curious case of medical treatment in which there are no physiological benefits to the donor. However, in the case of egg donation, the intervention occurs not to save a life, but rather to fulfil someone else’s desire to have a child.

In Canada, where laws prohibit payment and a grey market in paid donors has emerged, the complexities of obtaining informed consent for egg donation are particularly fraught. Donors that receive payment (are they really donors if they are paid?) have to navigate a system where they are seemingly engaged in something illegal and they may not feel empowered to demand the kind of treatment (including follow-up care) to which they are entitled.

Egg donation, then, must be held to a higher standard of consent than other forms of medical treatment, a position also endorsed by a range of experts including the Canadian Fertility and Andrology Society, and the Society of Obstetricians and Gynaecologists of Canada. In 1999, these organizations issued an ethics statement stating explicitly that given the sensitive nature of egg donation, “obtaining voluntary, uncoerced and informed, written consent is crucial to the clinical acceptability of oocyte transfer between women.”

My study of consent forms for egg donation in Canada, published in the JME, reveals some of the curiosities of obtaining consent in this strange in-between place of medicine and reproduction. 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…

Mature Content?

27 Feb, 16 | by Iain Brassington

There’s an aisle at the supermarket that has a sign above it that reads “ADULT CEREALS”.  Every time I see it, I snigger inwardly at the thought of sexually explicit cornflakes.  (Pornflakes.  You’re welcome.)  It’s not big, and it’s not clever: I know that.  But all these years living in south Manchester have taught me to grab whatever slivers of humour one can from life.

Anyway…  A friend’s FB feed this morning pointed me in the direction of this: a page on Boredpanda showing some of the best entries to the 2016 Birth Photography competition.  (Yeah: I know.  I had no idea, either.)

I guess that birth photography is a bit of a niche field.  The one that won “Best in Category: Labour” is, for my money, a brilliant picture.  Some of the compositions are astonishingly good – but then, come to think of it, childbirth isn’t exactly a surprise, so I suppose that if you’re going to invite someone to photograph it, they’re going to have plenty of time to make sure that the lighting is right.

A second thought that the pictures raise is this: no matter how much people bang on about the miracle of birth… well, nope.  Look at the labour picture again.  I can’t begin to express how glad I am that that’s never going to happen to me; and I’m even more convinced than I was that I don’t want to play any part in inflicting that on another person.

But my overriding response is something in the realm of astonishment that some of the pictures are blanked out as having “mature content”.

I mean… really? 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…

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