Today’s dose of righteous anger comes, via Ophelia Benson and Marie Myung-Ok Lee writing in The Atlantic, from the fifth annual Congress on Aesthetic Vaginal Surgery, held just outside Tuscon at the end of last year.

The affable organizer of the Tucson event, Dr. Red Alinsod, was an early entrant into cosmetic-gyn, and is recognized for inventing the procedure in which the labia minora are completely amputated to create a “smooth” genital look known in the field as “the Barbie.” Though he began his career by winning a prestigious fellowship in gynecology-oncology at Yale in 1990, Alinsod now spends his days making genitalia “look pretty” for the wealthy patients who flock to his Southern California practice from all over the world. He is also an evangelist for the field, spreading its lucrative gospel to fellow doctors tired of toiling in the time-intensive and high-liability fields of traditional obstetrics and gynecology.

Cosmetic gynaecology, it appears, has been pretty much rejected by mainstream medicine – which means that it’s all-but-unregulated.  It’s a deeply weird business, though.  Actually: scrub that.  It’s really rather sinister. more…

In spare moments, I’ve been wondering about the Advocate-General of European Court of Justice’s recent recommendation that patents involving human embryonic stem-cells be prohibited, and the response that it’s generated.  One of the best-publicised responses was the letter from Austin Smith et al that appeared in Nature, which complained that the recommendation would be bad for European science:

Scientists working in stem-cell medicine will not be able to deliver clinical benefits without the involvement of biological industry. But innovative companies must have patent protection as an incentive to become active in Europe.

The advocate-general’s opinion therefore represents a blow to years of effort to derive biomedical applications from embryonic stem cells in areas such as drug development and cell-replacement therapy. If implemented, European discoveries could be translated into applications elsewhere, at a potential cost to the European citizen.

At the same time, there’s a number of pro-life organisations and blogs that have welcomed the recommendation as a straw in the wind, and for just the same reason.  Where the pro-lifers and Smith agree is in the supposition that not being able to patent hESC-derived procedures will remove the commercial incentive to try them out; which means that they won’t get tried out; which means the hESCs won’t be used.

I may be missing something, but I don’t see it that way. more…

James Wilson (UCL) and I recently wrote a briefing paper for the Nuffield Council on Bioethics on the ethical issues surrounding hyper-expensive treatments – that is treatments which exceed NICEs usual cut off point of £30000 per quality adjusted life year (qualy). One factor that we kept coming back to was the need to consider the opportunity cost of funding relatively inefficient medicines (which has implications for example for Cameron’s Cancer Drug Fund).

I thought it was apt today to reflect on the opportunity costs involved in the tax payer footing the bill for part of the royal wedding – namely the security costs. These have been estimated now at twenty million pounds.

Hence if this public expenditure was instead used on health care, using NICEs cut off point we could at least save 666 quality adjusted life years – and of course it could be much more since many treatments cost less than £30000 per qualy.

Now of course things aren’t this clear cut, we have to factor in the probable tourist income due to the wedding, the tax income from people buying bunting and flags from the pound store and so on as well as the impact of all the good will and cheer the papers are nattering on about. And to counter balance this we need to consider any further tax earnings from the 666 Qualys generated, the economic costs of an additional public holiday and so on.

Nonetheless it is at least a sobering thought – there may well have been a public good based argument for the royal couple eloping…

It’s not often that you get good news from Pakistan, especially in respect of sex or gender issues.  Rarer still that you hear of Pakistan not only finally doing what the rest of the world has taken as minimally decent for ages, but actually taking something of a lead.

On the face of it, this is one such story: Pakistan has introduced a third category in its national identity card for transgender people.  I’m not quite sure how far this goes – this story indicates that the law allows men who’ve been castrated to count as members of a third gender, which implies by exclusion that they aren’t allowed to count as women if that’s what they prefer – but, all the same, it looks like a (rather surprising) move in the right direction.

There is an oddity, which is that the women/ eunuchs/ neuters (sorry: I have no idea what the correct noun is here: the Ahmadiyya Times uses the second option, but that seems loaded.  Any suggestions?) in question are employed by the government to embarrass tax-avoiders into paying by turning up at their homes.  (The Department of Embarrassing Transsexual Tax-Collectors has a certain comic aspect to it, but… well…)  Yet bizarre as that is, it also has an optimistic side, inasmuch as they’re clearly willing and able to be public about their status.

If anyone knows anything more about this and the legal reasoning behind it, please do put something in the comments.

Thanks to Sorcha Uí Chonnachtaigh for the pointer.

There’s a very interesting article on the BBC news website at the moment concerning the decision of Jono, a man with Treacher Collins Syndrome, about whether or not to have children of his own.  His having the syndrome himself has led to a number of difficulties – but he seems to have got off fairly lightly compared to the way that it affects some:

While some sufferers have problems with hearing and facial features, others can be born unable to breathe.

“I’ve met a girl that needed a tracheotomy and 24-hour care, and another boy had to have his jaw extracted – which means putting a brace on every morning and and twisting it, which breaks the jaw – how can I knowingly put a child through that? I’d feel so guilty.”

The question he’s asking himself is this: is it acceptable for him to take the risk of putting his own child through the condition – especially when it may manifest more severely in that child than it has done in him?  Of course, there’s the possibility of PGD: since the mutation can be spotted by means of genetic testing, and since there’s only a 50% chance of the gene being passed on, it ought to be possible to fertilise eggs in vitro and select for implantation only those without the syndrome.

But things aren’t that simple for Jono: he’s aware of the expressivist objection that

“[i]t re-enforces the stereotypical notion that disability per se is a bad thing that should be excluded and that disabled lives are intrinsically less valuable.

“Also, if you make the comparison with ethnicity, which I know is not always helpful, and you want to start doing this to people of colour, then there would be, quite rightly, an outcry. For me, disabled people are part of the rich mix of a diverse society.”

I have to admit that I don’t buy the expressivist objection, for the fairly straightforward reason that some things are just bad – had it been possible to genetically manipulate the embryo-that-would-become-me so that it didn’t get migraines, for example, I’d've been better off; and the same thing applies to any condition that a person could reasonably prefer to be without.  And had the genetic manipulation meant that I never came to be, and someone rather like me was born instead… well, that’s hardly my problem, since I wouldn’t be there.  I don’t think that the racism analogy works, because all else being equal, ethnicity doesn’t make the blindest difference to your quality of life: you need bigots for that.  TCS, by contrast, does make a difference (although others’ reactions sometimes won’t help).  Nor does diversity carry any weight, I think: again, a world without migraines would be less diverse, but that sort of homogeneity is fine by me – and I think it’s fairly monstrous to suppose that a trait that is likely to have a deleterious impact on a future person’s life is mitigated in any way by an appeal to diversity.

Where he is on stronger ground, though, is in pointing out that PGD is burdensome on his partner:

“She’d have to inject the hormones, have the eggs taken out – it puts her under so much pressure and that frustrates the life out of me because this is my condition.”

That’s an important point: Jono’s reproductive decisions are not just about him, but about his partner, too.

One question that does occur, though, has to do with parenting and what makes a parent.  I’ve suggested before that I have a hunch that we tend to fetishise genetic relationships more than they really deserve.  So when Jono talks about being a parent or, in the context of parenthood, about his worries concerning passing on a gene, I’m left wondering whether there might be more than one way to be a father.  Suppose Jono and Laura chose a sperm donor.  And suppose that several embryos are created, and one or two eventually brought to birth using donor sperm.  Jono would still have a strong argument for being the father, in that he would do all the things fathers do except contribute DNA – but since it’s some of his DNA that’s at the root of the problem, and since all men on the planet have overwhelmingly similar DNA to begin with, that might be only a tiny difference.  Of course, this wouldn’t make the burden on Laura go away – and presumably she wants a child with Jono, rather than with Jono’s genes – but it might make a difference to the selection process: instead of discarding embryos because they carry the TCS gene, the “extras” would be discarded simply because Laura has better things to do than pop out all those children.  (Or we could imagine that the insemination is performed informally, using the turkey-baster method, so there aren’t any spares.)  Would that make a difference?  From a disability perspective, it probably would… except that we might still worry that in having chosen a donor to begin with, Jono and Laura are already discriminating against TCS carriers.  They don’t have to discard TCS embryos: it may be enough that they’re willing to take radical steps to avoid having actually to discard them.

It’s a very good article – thought provoking and well worth reading.

I’m a bit behind the curve with this, but I thought it worth noting the story of Nan Maitland, who recently travelled to Dignitas* at the start of March.  She was suffering from arthritis – which, though painful, is a long way short of a terminal illness.  (Her story is reminiscent of Robert and Jennifer Stokes.)

Maitland’s decision was – predictably – not supported by Care not Killing, whom The Guardian reported as saying that

the case demonstrated “a shifting of the goalposts” by pro-rights campaigners and would place pressure on vulnerable people to end their lives if they felt they were a burden. “It’s a very scary situation that not very severely disabled people could, at the drop of a hat, opt to kill themselves, and [Maitland's case] shows a ramping-up by campaigners,” said a spokesman. “Many people have to live with arthritis. It does expose the lie that only people who are terminally ill will be affected by changes in the law.”

Perhaps more suprisingly, Dignity in Dying also spoke against Maitland’s decision:

“We don’t think that you could faithfully have in law assistance for someone who wasn’t terminally ill. Then you’re making judgements about quality of life, not quality of death.” She said their work was to improve the experience of death for those “where it was an inevitability”.

I think that both organisations are wrong. more…

Peter Singer had a piece in The Guardian last week comparing the way that we value lives around the world.  He points out that when NATO accidentally kills Afghan civilians, it pays out compensation.  This never goes above about £5000 per death.  In comparison, NICE’s threshold for funding a treatment on the NHS is £20-30k per QALY.  But, he reminds us,

that sum is per QALY, not per life saved. So if we take the bottom end of this range, Nice recommends that the NHS pay up to four times as much to extend the life of a British citizen by just one year, as the MoD is prepared to pay in compensation for killing a child or young person. That young person could – even allowing for Afghanistan’s dismal life expectancy – expect to live another 40 reasonably good-quality years. That suggests an answer to the question with which I started: it takes about 4 x 40, or 160 Afghan lives, to be worth the same as one British life.

But that would not be the right answer, because £5,000 will buy much more in Afghanistan than it would buy in Britain – according to international price comparisons, perhaps four or five times as much. Let’s say five times. Even with that adjustment, it is going to take 32 Afghan lives to be worth the same as one British life.

At the same time, the US government’s compensation has paid on average $1.8m to the family of each victim of the destruction of the World Trade Center.

Singer’s claim is that NATO doesn’t take seriously the idea that all human lives are valuable.  But while it’s easy to get swept along by his claims (and they are powerful) I’m not sure that they stack up – especially in relation to the NHS; this is a shame, because the basic point he’s making is important. more…

Adam Curtis is one of my favourite film-makers: I don’t think his programmes are always right, but they’re always provocative – and I think they’re more right than wrong.  He also has a blog, which – though updated even less frequently than this one at the moment – is excellent.

His latest post is about the evolution of humanitarian intervention; I do recommend setting aside an hour or so to have a look at it.  But if you can’t spare the time, scroll down to the bit about Médecins Sans Frontières: it raises some interesting questions about the idea of medical neutrality in conflict zones.  For MSF’s founder, Bernard Kouchner, neutrality is no such thing:

Kouchner had worked for the Red Cross in Biafra, but he had become disgusted by the Red Cross’ refusal to publicise the genocide created by the Nigerian government.

Just as the Red Cross hadn’t revealed the horrors they saw in World War Two in the Nazi concentration camps because they insisted on being “neutral”

Kouchner resigned and went back to Paris where he founded a new humanitarian organisation called Medecins Sans Frontieres. Being neutral, Kouchner said, really meant being complicit in the horror. And MSF would never be complicit. It was on the side of the innocent victims.

It’s fascinating to see how, at least in the early days of MSF, their claim was that the Red Cross was not neutral – that it should have been more interventionist.  I’m reminded of Churchill’s complaint about the BBC during the war, that being impartial between the Allies and the Axis was like being impartial between the firemen and the fire.  And perhaps that terminology is important: maybe there is an important difference between neutrality and impartiality.

We do expect medics in conflict zones to be neutral – but, of course, by the fact that they’re there at all, they aren’t wholly neutral: they’ve taken a moral position and are acting based on what it demands.  This seems to be the MSF position; what counts is not neutrality, but the just – impartial – application of a non-neutral moral position.  Except that doesn’t seem right, quite, either.  Maybe there isn’t all that much between neutrality and impartiality – but, in that case, the MSF objection to the Red Cross seems a bit petulant.

I don’t know.  But I do thoroughly recommend Curtis and his blog.

This was supposed to be embargoed, but there’ve been enough leaks to make me think I can go public with it: news has emerged today that the Centre for Professional Ethics at Keele (PEAK) is facing the axe, as is the Keele Philosophy programme.

A Senate Paper detailing the proposed cuts is widely available, and people outside Keele can view it here.  The general gist of it is that most of PEAK’s activity is to go, with a small amount absorbed into the Law School.  The Philosophy programme is to go as well.  It also looks as though the problems faced by PEAK and the Philosophy department are attributable to a combination of the recession and bad management by the University; hardly unique, hardly incurable, and hardly grounds to close the academic department.

As far as I know, the decision hasn’t been finalised yet – I believe that the relevant meeting will be in April – so there’s still time to do something about it.

Any decision to shut PEAK would be senseless.  I’m informed that, not so long ago, the department provided Keele with 2% of its overall income.  But even if you put that aside, PEAK is an academic gem, and any half-sane university would do everything it could to keep it going.  PEAK boasts an absurdly high concentration of talent, with world-standard researchers in reproductive ethics, public health ethics, and research ethics (to name just three fields).  Its web of alumni and former staff demonstrates just how successful it has been over the years at attracting and honing talent, and sending it back out in to the world.

I have personal reasons to be very attached to PEAK.  At the start of my career, the Centre went out of its way to provide me with an office, library access, and enough teaching to keep me solvent, and did so for long enough that I could cobble together enough publications to stand a chance of getting my current gig in Manchester.  The three years I spent there were a joy.

And, of course, my co-blogger David Hunter is based at Keele.

This is a very bad day for Keele University, and a very bad day for bioethics in the UK, if not the world.

Facebook groups for both have been set up here (for PEAK) and here (for Philosophy).  If you would like to express your opinion of the proposal (politely please) the VC can be contacted here:
Prof. Nick Foskett, VC: n.h.foskett@vco.keele.ac.uk ; you could cc: Prof. Rama Thirunamachandran, Deputy Vice-Chancellor and Provost: r.thirunamachandran@vco.keele.ac.uk, and Prof. David Shepherd, Dean of Humanities and Social Sciences d.g.shepherd@humss.keele.ac.uk – both of whom are signatories to the proposed restructuring.  Please, though, do keep things polite.

(Thanks to Andrew Willetts for the Senate Paper link)

I mentioned a few days ago the proposed law in South Dakota that would provide a defence of justifiable homicide for to those accused of killing abortion doctors.  That proposal was shelved… but reports keep coming in of proposed laws, each of which is crazier than the last.

I’m beginning to wonder if there’s a big game of lunacy poker being played over there. more…