The Swiss seem to be endlessly inventive, bioethically speaking. Their liberal legislation on assisted suicide has made it a small cottage industry. Not long ago they passed law declaring that goldfish had to be treated with dignity and could not swim alone in a fish bowl. Now they are set to mull over the question of decriminalising incest. I have a feeling that this is a proposal which will not make much headway, but unsurprisingly, it has defenders. One Swiss MP says, ""Incest is a difficult moral question, but not one that is answered by
penal law."
There were howls of indignation from conservative groups around the world who declared that this was evidence of a sllppery slope: first gay marriage, next polygamy, then incest. What do you think, and more importantly, why? It seems to me that many bioethicists would find it difficult to maintain the incest taboo apart from health reasons.
This is not a very cheery way to introduce the last newsletter of the year. My apologies. We wish you all the best for Christmas and the New Year. Jared Yee and I will be on holidays. BioEdge will resume in late January.
The big news this week is Wikileaks. I was
even inspired to write a comment on the online magazine I edit, MercatorNet.
It’s a very convoluted issue, but I end up taking a very dim view of leaking US
State Department cables.
It turns out that there is a bioethics
angle to Wikileaks. American diplomats were asked to do some bio-snooping for
the State Department – collecting iris scans, fingerprints, DNA profiles from cigarette
buts and coffee cups and so on (see below). I wonder if their subjects were asked to fill
out consent forms. There’s no way you will catch me schmoozing with American
diplomats any more…
Privacy is a dimension of bioethics which will
grow in importance in the 21st century. As governments, companies and other
institutions amass more and more personal information about us, all archived in
databases, the likelihood that this information will be abused grows. I find it
quite unsettling to contemplate the possibility that X-Ray scans of me passing
through airport screening could be posted on the internet. It’s a very remote
possibility, to be sure, but the Wikileaks saga shows that it is possible.
I have to get something off my chest. What really annoys me
about the IVF industry is the commoditization of human reproduction. The “father”
of IVF, Robert Edwards, was awarded a Nobel Prize earlier this year for helping
infertile couples to overcome the anguish of not being able to have children.
His endeavour sounded altruistic and humane.
Yet the need for technology and professional expertise is
turning the most intimate of human relationships into a profit-driven business.
It exploits the intense and unextinguishable desire to create a family for
commercial gain.
This week the FDA approved the second human
clinical trial of embryonic stem cells. Advanced Cell Technology, one of the
few companies which is working with hESCs, plans to treat 12 patients who have
Stargardt's Macular Dystrophy, a rare degenerative disease which leads
inexorably to blindness. The company foresees a possible US$25 billion-$30
billion global market – if the experiment succeeds.
After nearly 10 years of debate over the
ethical and safety aspects of human embryonic stem cell treatments, the FDA has
only approved two trials. In the meantime, as we report in this week’s
newsletter, induced pluripotent stem cells – which have almost none of the
ethical baggage of embryonic stem cells -- are showing immense promise.
Harvard’s Kevin Eggan told Science, “it's hard not to be pretty pleased with
the progress that's been made in a few short years.”
It makes me, at any rate, wonder what
exactly is the point of persisting with embryonic stem cells. Many leading stem
cell scientists have abandoned hESCs and are working on iPS cells. Could it be intellectual
inertia, an inability to change tracks in the light of new knowledge? Is it
easier to raise finance for the glamorous and controversial embryonic stem
cells?
We’d like to make BioEdge truly an international newsletter.
Of course, it is far easier for us to scan English-language newspapers – which
explains why we run more news about the UK, the US and Australia. However, we
are eager to cover events from other countries as well.
So I’d like to give a special thanks this week to a reader
from Turkey, Nüket Örnek Büken, who tipped us off about a scandal at an IVF
clinic, and to a reader from Switzerland, Johann Roduit, who pointed us toward
a controversy over force-feeding.
We cannot guarantee that we will publish all tips, but we’d
like to try. Send them in. It will help all of our readers to acquire a global
perspective on bioethics.
A musical about
euthanasia? When I first heard the news, I thought the director was trying to
upstage Mel Brooks’s slapstick comedy The Producers. That featured “A
Springtime for Hitler”, a musical which showed "the true Hitler, the
Hitler with a song in his heart."
But it turns out
that the musical is a lavish Bollywood production called Guzaarish (The
Request). Musicals are the natural medium of Bollywood, so it’s a bit unfair to
compare it to Mel Brooks.
However, it is a
good reminder of the growing prominence of India in bioethical quandaries. Sex
selective abortion? Tens of millions of girls have been aborted. Surrogacy?
There are villages where bearing other people’s babies is an important
contribution to the local economy. IVF? Some Indian doctors are pushing for a
share of the world market. Graft? The former president of the Indian Medical
Association is facing jail on corruption charges.
I wonder whether
Indian medical students are being trained in a bioethics which supports human
dignity. They already have to face tremendous challenges. Will they have the
philosophical resources to resist pressure for legalised euthanasia?
The biggest news of the past week was the
US mid-term elections. The Democrats were routed and surrendered control of the
House of Representatives to the Republicans. This will not transform the
bioethical landscape but it will make embryonic stem cell research more
difficult if scientists are depending on Federal funding.
However, the item which caught my eye was a
brief story about an IVF blunder in Singapore. As usual with such things, the
wrong sperm was used – something the parents detected only when a blood test
showed that the baby had a blood type belonging to neither parent – a sign that
something was gone wrong.
As usual, the medical director of the IVF
clinic apologised but insisted that the centre's operating procedures
"meet all regulatory requirements, and are of the highest international
standards". Am I the only one who finds this neither reassuring nor
convincing? Nearly all the IVF blunders which have appeared in the media have
involved racial differences which were very obvious at birth. What about all
the other babies?
Call me a sceptic, but I am not ready to
believe assertions that such incidents are exceedingly rare. How do IVF clinics
know? The only way to confirm the parentage would be to genetically test every
baby. To the best of my knowledge, no one has ever proposed that. But wouldn’t
it give parents the certainty that the child is theirs?
Sorry. This edition of BioEdge is a bit
late, as I spent some time this week preparing for yesterday’s annual
conference for New Media Foundation. We discussed how to improve BioEdge and
our other publication, MercatorNet, and how to promote them more effectively.
Actually, as a BioEdge subscriber, you are our
best sales person. If you know of colleagues or friends who might be interested
in receiving it, please pass the word on. We have found that Facebook is
particularly effective! Post an endorsement on your wall!
This week, for some reason, most of our
stories deal with euthanasia. At the top of the page is a touching tribute to a
Frenchwoman who has suffered from locked-in syndrome for 30 years. The French
government has just given her the Legion of Honour for her efforts in fighting
euthanasia.
Euthanasia is back in the news. A new
report from a British think tank is highly critical. The author, Cristina
Odone, argues that the “chattering classes” will suffer none of the harms of
legalised euthanasia, protected as they are by their network of friends and
colleagues. It is the vulnerable who will be expected to take early leave: the
elderly without relatives, the poor, the disabled, and so on. It is a
well-informed and impassioned essay.
One of the news items in this week’s
newsletter might support her view. A paediatric palliative care doctor from
Vancouver describes how he helped five newborn disabled infants to die. No
doubt the children had a very short life expectancy. But his solution was to
pump them so full of sedatives that they could not cry – or disturb the parents
– and to withdraw all nutrition and hydration so that they died of thirst and
starvation. But it was still very distressing for the parents to look on as
their child became more and more emaciated until it passed away. At least one
of the children lasted 26 days.
“It's very hard to study because this is ethically
a very sensitive area,” he says. Is this the right way to deal with disabled
newborns? Something doesn’t seem quite right here. Any ideas from readers?
This always happens. Go away on a holiday
and the biggest story of the year breaks in your absence. Oh well.
This time it was the Nobel Prize awarded to
Robert G. Edwards for developing in vitro fertilization. This was greeted
around the world with great applause as an estimated 4 million new lives have
emerged in the world thanks to this technique.
But I listened in astonishment to a
representative of the committee who selected Professor Edwards as he blandly
declared that the ethical issues surrounding IVF itself were “resolved” decades
ago. I am not quite sure what “resolved” means. Is there another field of
medicine which regularly gives rise to such knotty ethical issues, ranging from
the exploitation of impoverished Indian women as surrogate mothers to the
thousands of children of anonymous sperm donors who will never know their
fathers?
In a sense IVF is a touchstone of
contemporary bioethics. Accepting its complete legitimacy means embracing the
project of human enhancement for which Professor Edwards was an enthusiastic
midwife. In the wake of IVF come genetic engineering, cloning (possibly),
surrogacy, designer babies… I, for one, felt disappointed that the Nobel
committee’s ethical sensitivities were so dull.
I know that this is a controversial stand.
Tell us what you think.
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| michael@bioedge.org
Hi there,
Hi there,