This from the bioethics.net blog:

A woman’s 21-year-old son dies in a Texas bar fight. The bereaved mom wants the son’s clearly virile and tenacious genes to live on in the next generation and fights to have his sperm collected and stored so that someone may carry his seed. She says, on the one hand, that it was always his wish to have children and wants his wishes to be carried out. When the physicians refuse, mother Evans goes to the judge to get her son’s sperm out of his body and into a surrogate. She wants someone to carry her grandbaby. Now!

It has been reported today in Live Science, that a judge has ruled that the mama’s wishes (and purportedly son’s) have carried the day.

According to Livescience, a part of the judge’s reasoning was that

[t]here were other body [that is, body parts] harvesting that was going to take place, and I didn’t see why this additional body harvesting shouldn’t take place.

This is, indeed, a very strange case.  But I don’t think I agree wholly with the implicit sentiments of the anonymous bioethics.net blogger who comments on it:

My soap opera characterization above notwithstanding Nikolas Colton Evans’ death was a tragedy, but it does not justify harvesting his sperm so that his mother can create a replacement child and mislabel it as her son’s wishes to have his own children some day or her own wishes to be a grandparent.

Nikolas Colton Evans’ life was cut tragically short in a bar fight and he will never get to exercise his own reproductive choices in life. This does not mean his mother gets to exercise those choices for him after his death.

For sure, Colton’s death doesn’t justify anything.  But neither is it immediately clear what, exactly, is problematic about the procedure: as far as I can tell, he had wanted to have children, and so extracting and using his sperm is not contrary to any particular wishes he’d expressed.  Moreover, even if it had been, Colton himself somewhat drops out of the picture anyway - being dead means that he’s not an agent, and so doesn’t obviously pack the same moral punch as an agent.  His mother might have had all kinds of strange reasons for wanting to created a child with his sperm - and it’s quite possible than none of them is even remotely a good reason - but, unless she was harming or wronging anyone, it’s hard to see precisely why we should stop her.  (I don’t know: maybe her request sprang from grief and emotional turbulence.  That’s understandable.  Maybe it’s a silly request.  But silly doesn’t mean morally problematic…)

On the other hand, of course, I also don’t see that there’s any enormously good reason to force the doctors to go along with her wishes, or how the verdict would be enforceable anyway.  It seems that the way is legally clear for the procedure to go ahead if someone is willing to perform it - but, in the absence of any such person, then it’s rather a formal matter.

The New Scientist is carrying this rather peculiar story: a sperm bank in New York is being sued under product liability law by a girl who claims that her conception was from “faulty” sperm.  The 13-year-old girl named in the suit has Fragile X syndrome; apparently, she does not have to show that the sperm bank was negligent - ”only that the sperm it provided was unsafe and caused injury”.

Of course, “wrongful life” suits are nothing new, and are frequently met with a couple of counterclaims: this is the only life you have, or could have, and so it’s hard to see how you’ve been harmed or wronged by it; and unless you can demonstrate that you’re worse off existing than not existing, you probably haven’t got even the hope of a sturdy argument.

At least on the face of it, the suit here might be construed as being different because it revolves around the idea that the sperm was faulty in some way sufficient for it to count as unsafe and injurious - the claim is not that the life is wrongful in itself, but that the wrong lies somewhere else.  On the other hand, and while, of course, I don’t want to be prejudicial about this, the difference strikes me as being cosmetic at best.  The suit looks like a stretch for the same reasons that apply to wrongful life suits.  The girl in the case could not exist but for that particular donor donating that particular gamete, which fused with that particular egg in that particular way.  Alter any of those factors - replace the “defective” sperm with a “non-defective” one, or have the genes work their magic in a slightly different manner, and you might get rid of the Fragile X - or, at least, some of the characteristics - but you’d get rid of the future litigant as well.  The girl seems to be claiming not that she would be better off not having been born, but that she would be better off having been created from different sperm - and the metaphysics of such a claim are… well… interesting…

There’s another question, too: by what standard is the sperm faulty?  Just that the genes coded for a particular phenotypical quirk?  Well - doesn’t the same apply to all sperm and all eggs anyway?  Potentially, what’s in question here is a right to be born without genetic defects at all - and this presupposes an account of the point at which a mere quirk becomes a defect.  It can’t - surely - simply be a case of a defect being any characteristic that we would change if we could, because then which parent would escape a whipping?  And, if a middleman like a sperm banker can be held responsible for propagating faulty genes, would there be any reason in principle why the same wouldn’t apply to any “non-perfect” parent, granted that none of them is perfect either?

It’ll be interesting to see what happens…

In case you missed it, there’s a little under a week left to listen again to last night’s Radio 4 documentary on the Swiss assisted suicide movement: follow this link.  For what it’s worth, I couldn’t help thinking that it was a little scare-mongering and tabloid.  (So the mentally ill or non-terminal might be able to access AS; maybe even the not-ill-at-all.  Woo-hoo.  I don’t really see why that should have to be a problem.  At the very least, it seems to display a shoddy blanketing of all those with mental illness as being, like, CRAZY ALL THE TIME.  Not so.  It seems perfectly reasonable to imagine, say, a schizophrenic or bipolar person deciding calmly that they no longer want to live this kind of life - and the mere fact that, strictly speaking, they have a mental illness is neither here nor there for most of the time.  Granted, you might want to assist with suicide during a psychotic episode - but there’s more to it than that.)

The programme gets a reasonable write-up in The Times - with, unsurprisingly, extra comments from people like Care not Killing and Dignity in Dying.  Sarah Wootton, of the latter organisation, is quoted as saying that

We believe the law should change in the UK to allow terminally ill, mentally competent, adults to have the choice of an assisted death but we are also very clear that should be within a strict framework of legal safeguards.  I am very concerned about Dignitas. Mental competence is an essential precursor to an assisted death and we are absolutely immovable on that. We need to give a clear signal that to assist non-terminally ill adults to die is wrong.

Well, yes: legal safeguards are probably in order.  But I find myself siding with Dignitas’ Ludwig Manelli here - why the terminal illness criterion?  (Apologies for the blatant spamming, but this is a question I’ve raised elsewhere.)  If a person wants to cash in their chips and they’re competent, and if there’s someone who’s willing to help, then why not let them?

PZ Meyers recently blogged about his response to one of the perennial claims of pro-life advocates: that life begins at conception.  Predictably, he accuses pro-lifers of misunderstanding the question, and he does this by denying that life begins at conception because life began billions of years ago: everything else is just a part of a continuum heading from that.

Life does not begin at conception.

It’s an utterly nonsensical position to take. There is never a “dead” phase — life is continuous. Sperm are alive, eggs are alive; you could even make the argument that since two cells (gametes) enter, but only one cell (a zygote) leaves, fertilization ends a life. Not that I would make that particular claim myself, but it’s definitely true that life is more complicated than the simplistic ideologues of the anti-choice movement would make it.

Well, it’s hard to deny this - but I do wonder whether he’s actually got the point.  That is to say, I wonder whether he’s being a bit literal.

It might be necessary to break things down here a bit.   more…

Stem cells have been in the news rather a lot lately.  President Obama has, it’s currently being widely reported, lifted Dubya’s restrictions on human embryonic stem-cell research, much to the chagrin of some, and the delight of others.  (Interestingly enough, among the worriers we find a surprisingly large number of British commentators who point out that scientists might be tempted to head back to the US to do their research after having come here in the past few years.)

The other hESC story of late has been the “breakthrough” that allows the “ethical” production of stem cells - that is, stem cells without the “embryonic” bit.

I ought no longer to be dissapointed by the flippant use of the word “ethical” in this sort of story - as if hESC researchers have been utterly devoid of any moral support for what they’ve been doing (because clearly finding cures for diseases has nothing in its defence…) - but, well, ho-hum.  Let’s allow for the sake of the argument that the word “unethical” means something substantial, and that hESC research is in some sense unethical.

Would that mean that new methods that allow us to reprogramme cells and thereby avoid hESC research is in some sense (again, allowing that the predicate is meaningful) “ethical”?  Not necessarily.  I’m reminded here of a paper given at the IAB conference in September by Katrien Devolder, which is currently in reviewerland, in which the point was made that foresaking hESCs now still implies complicity in past hESC research, since the technology relies on hESC research.  (I’ll leave aside debates about the scientific advantages of one technique compared to the other.)  So if you’re worried about dirty hands, you ought to be worried about the new technologies.  That is to say: if hESC research is morally tainted, then so is research into induced pluripoent stem-cells or other such technologies, since iPSCs are only possible thanks to hESC research.

For those who want the benefits of stem-cell research, but who would prefer minimal loss of embryonic life - and that group ought really to cover everyone who doesn’t have a pathological hatred of embryos, I suppose - then the way forward seems to be at most to accept iPSCs with a rueful smile.  But if we’re prepared to do that, then why not cut to the chase and embrace hESC research?

The creator of Discworld writes to The Times:

There may have to be [...] legal requirements that should be satisfied, but they should not be such that they become a barrier to the patient’s wishes.

It’s another blow to fatherhood, the traditional family, and all things good and pure, squeals the Daily Heil.*  What could raise such spleen?  By the looks of it, it’s Part 2 of the Human Fertilisation and Embryology Act (2008), although the paper doesn’t have the good grace to provide a link.  This piece of legislation reduces the place of genetic relationships in respect of fatherhood - in effect, it reflects a shift away from a (presumed) genetic basis for parenthood to a more social basis.  Mothers remain gestational, but fatherhood, in the legal sense, becomes a matter of consent.  And, with that consent, the named second parent assumes the rights - and, importantly, responsibilities - of the (traditional) father:

Where by virtue of section 33, 35, 36, 42 or 43 a person is to be treated as the mother, father or parent of a child, that person is to be treated in law as the mother, father or parent (as the case may be) of the child for all purposes.

What really gets my goat about the article is the way in which a number of commentators has been wheeled out to provide their anti- soundbites.  Balanced it is not.  Notably, all the bioethicists quoted are anti-the legislation: there’s no hint that there might be anything good about it from a bioethicist’s point of view.  Thus the false impression is given that we’re all of a mind, and that “ethics” roughly equates to a kind of social conservatism.

For the record, and for what it’s worth, I can see lots of good things about the law.  Even granted for the sake of the argument that, generally, a hetero and stable marriage provides the best possible start in life for children, it doesn’t follow that the other options are damaging - there’s a false dichotomy here.  (Having parents who can take you to the park and play football is probably better than having, say, paraplegic parents - but it doesn’t follow from that that paraplegics even come close to harming their kids.  Perfect parents would be great - but none of us has them…)  That a non-related person may be able more easily to take on the parental role and responsibilities strikes me as a good thing - and, if you’re a fan of the nuclear family, it ought to strike you similarly.  Even if you think that having a nominated second parent is a poor substitute for the traditional father, it is still at least a substitute.  It’s better than nothing.  (And, of course, it’s not a given that a child always would be better of in a traditional nuclear family.)

But I don’t want this to be a piece about the virtues and vices of a law.  Its about the representation of bioethical opinion in the news.  I realise that that’s not really a reasonable expectation - the Mail has to sell papers somehow, and it knows what its target market wants to hear - but… grrr.  A little bit of thought would be nice.  And, if this post achieves anything simply by appearing on Google searches, at least it’ll have gone some way to balancing the picture.

*Oh, all right.  I know I’m kicking a puppy.

Having spent a chunk of my weekend reading the Purdy ruling, one of the things that it seems to illustrate is the way in which ethics and law sometimes seem to come apart.  The ruling notes that Purdy and Puente are faced with “an impossible dilemma”, and that “although Mr Puente would be willing to pay whatever panalty the law may require, for Ms Purdy it would be a price too high.”

The current Suicide Act is framed as it is, I suspect, partly to demonstrate that the Crown does not approve of suicide, and partly to protect the vulnerable.  The irony here - and, for once, it may be that the word “tragedy” would be the correct one to use - is that a law designed with the best of intentions may, conceivably, lead to Purdy dying before she wants to, because she will feel pressured into making the trip to Dignitas before the point at which her life becomes intolerable.  If this is what happens, it will be hard to do anything but salute her moral heroism and lament the fact that it was necessary to take that action - or, at least, that she felt it necessary.

On the other hand, there have been - as far as I know - no prosecutions in respect of trips to Dignitas.  And it’s hard to see how it could be in the public interest for there to be any such proceedings.  This might be seen by some as tacit permission for assisted suicide.  That’s probably not quite right - but it raises an interesting thought.

Let’s allow a couple of axioms.  First, though the legal position may be designed to demonstrate a lingering formal disapproval of suicide, doing anything about that disapproval is another matter entirely.  Bluntly, it’s not the place of the law to regulate everything, and some things are none of the law’s concern.  This is why there are no prosecutions for, say, adultery: the law may have a certain opinion on its rightness or wrongness, but it doesn’t impose it.  Suicide, arguably, falls into this category.

So we’re left with the thought that the aspect of the suicide legislation that carries the weight reflects the thought that the vulnerable ought to be protected from unwanted “assistance”.

That being the case, though, we might imagine that there would only ever be cause for the law to worry about a case of assisted suicide in those cases when a person’s willingness to die was called into question.  In those cases - such as Purdy’s - where the suicide has made no bones about their intention, then worries about vulnerability seem to reduce.  There’d be no public interest in bringing a prosecution, just because we could be reasonably sure that the assistance offered was genuine assistance rather than a euphemism for murder.  And that, in turn, suggests that the more gratuitous the violation of the law on assisted suicide - the more publicly it is done - then the less reason there is for the DPP to worry about it.

And this brings us back to Debbie Purdy’s dilemma - the one in which she claims the law forces her to travel to Dignitas sooner than she would otherwise like, the better to be able to ensure that her husband avoids prosecution.  In this case, I wonder whether she really does have to do that.  For such is the publicity of the case that we could be reasonably sure that the decision to travel was hers and that there was no coercion after all.  The vulnerable would still be protected; the tragedy of Purdy being made vulnerable by a law designed to protect the vulnerable would be averted; and we’d have an ethically defensible reason not to worry about an ethically defensible law being bent.  

Debbie Purdy has lost her case for clarification of the law on assisted suicide.  Details are all over your preferred news source: the BBC site seems to have crashed at the moment.

I’ll post something more thought-through later.

Here’s a handful of moral statements that, I guess, many people would take to be trivially true: We ought to save lives where possible; Saving more lives is better than saving fewer; It is a good thing to save lives as efficiently as possible; Saving lives is more important than improving tolerable lives.  Nothing too controversial there, I don’t expect.  (OK - there may be rough edges, but this is a blog, not a peer-reviewed paper, dammit…)

I mention these because I’ve just been reading Rose George’s The Big Necessity: Adventures in the World of Human Waste.  It’s as much of an eye-opener as it as a nose-closer.  Take this, for example, from the introduction:

2.6 billion people don’t have sanitation [...] Four in ten people have no access to any latrine, toilet, bucket or box.  Nothing.  Instead, they defecate by train tracks and in forests.  The do it in plastic bags and fling them through the air in narrow slum alleyways.  If they are women, they get up at 4 a.m. to be able to do their business under cover of darkness for reasons of modesty, risking rape and snakebites  Four in ten people live in situations where they are surrounded by human excrement, because it is in the bushes outside the village, or in their city yards, left by children outside the back door.  it is tramped back in on their feet, carried on fingers onto clothes, food and drinking water

The disease toll of this is stunning.  A gram of faeces can contain 10 million viruses, 1 million bacteria, 1000 parasite cysts, and 100 worm eggs. [...] Poor sanitation, bad hygiene and unsafe water - usually unsafe because it has faecal particles in it - cause one in ten of the world’s illnesses.  Children suffer most.  Diarrhoea [...] kills a child every fifteen seconds. [...] Public health professionals talk about water-related diseases, but that is a euphemism for the truth.  These are shit-related diseases.

Now go back to the moral claims with which I started this post.  If you think that they’re at least in the vicinity of correct, then it seems that there would be some hard questions to answer about our health priorities. more…