The lead story in today’s
newsletter is quite startling. A British man who became a quadriplegic in a
motorcycle accident appeared to be in a permanent vegetative state. But then
doctors discovered that he was fully conscious, evn though he was only able to
communicate with his eyes. “I'm glad he's alive and didn't make a living
will,” says his father.
The
BBC has made a documentary about this. We have posted a link to a YouTube video
with the first half of the program. Check it out.
You
will have to go to the website to see the video. While you are there, become a
Facebook “fan” of BioEdge. We’ve found that this is an effective way of
promoting the website and getting other readers. We appreciate your help.
One of the really cool things about being a
journalist is that you need not actually know very much. You just report what
other people said and did in a more or less colourful way. In fact, as a famous
British war correspondent once pointed out, “tout comprendre, c’est tout
pardonner” and “tout pardonner” makes dull copy.
Of course, one needs to comprehend
something, especially in bioethics, where some -- all actually -- of the issues
are so thorny and controversial. But I frankly confess to being baffled by the
angry American debate over healthcare rationing. Is it being thrifty or is it
violating human rights?
I am grateful to Jacob M. Appel, who writes
for a sterling bioethical journal called The Huffington Post, for enlightening
me. In a recent contribution he makes the argument for rationing in the
starkest possible terms: let’s unplug patients in a permanent vegetative state.
Caring for them costs too much. (See below.)
When it is framed in such black and white
terms, it is not difficult for me to make up my mind – at least at the outer
margins of the debate. I doubt that the Obama Administration will be using Mr
Appel as a consultant, but at least I now see what is at stake. So thanks,
Jacob.
I hope that you will be generous enough to
allow me to indulge one of my pet peeves. Until 2008, for several years, there
were fierce debates in the UK, the US, Australia and elsewhere about the
morality of research on human embryos.
Eminent scientists around the world
appeared on the media and before parliamentary committees demanding funding for
their research into human embryonic stem cells. Without it, they declared,
sick children will die. Squelch your ethical qualms about destroying human
embryos and we will deliver cures and miracle drugs. Most governments listened.
They changed the laws.
What has happened? An interview with Harvard
scientist George Q. Daley in the latest issue of Nature Medicine gives some
insight. In 2007, scientists discovered a new way of creating cells which were functionally
equivalent to embryonic stem cells. It was ethically non-controversial because
it destroyed no embryos. Within weeks Daley and many others abandoned their embryos
and set to work on induced pluripotent stem cells. But the laws still allow
them to destroy those embryos.
In other words, governments and the public
were scammed. They traded convictions for cures and they lost both. The anguish
and desperation were just bargaining chips. I feel that stem cell scientists
owe us an apology.
One reason to keep tabs on developments in
bioethics in the UK, the US and Australia is that arguments which convince us
are recycled and used in places like India, Thailand and Singapore. These
countries have high-quality medical technology, but unsophisticated bioethics. As a consequence they tend to adopt a utilitarian ethic without a
robust debate informed by a more metaphysical tradition and by respect for
human rights.
One example of this is a
bill being considered by India’s parliament which will legalise commercial
surrogacy. The groundwork was laid by a report written by the India Law
Commission last year. It was fairly sketchy and very liberal. But the bill ignored
its key point – that surrogacy should not be commercialised. If the bill passes
in its present form, poor Indian women will be exploited as wombs for hire. The
provisions of the bill which protect the rights of these unfortunate women do
not inspire confidence.
Judging from comments from Indian IVF
clinics, commercial surrogacy will be a bonanza for them. A world-wide market
for surrogate mothers, especially for gay couples, is opening up as adoption becomes
more and more difficult and they expect many clients. It is hard to describe
this as anything other than contemptible colonialism.
I wish bioethicists elsewhere would give
this dangerous and ill-conceived legislation a big raspberry.
I realise quite keenly and lament the fact that
BioEdge’s coverage of the world of bioethics is biased towards the
English-speaking world. I have a smattering of other languages, but it is
impossible to scan the media in Czech, or Danish, or Chinese. So, help! If you
feel that something is worth reporting outside of the Anglosphere, please pass
it on.
At least we managed to pick up a
fascinating story from Argentina which mixes power politics, media magnates, a
billion-dollar inheritance, human rights, dark secrets and genetic testing. The
adopted heirs of a leading Argentine leading media group have been forced to
give DNA samples to see if they are the children of los desaparecidos, victims
of the military junta which executed left-wing foes and adopted out their
babies.
Should they be forced by a
specially-tailored law to know the truth about themselves, especially since
their obscure origin may have nothing to do with los desaparecidos? Lots of
room for discussion here – and for a film script.
Amongst the intriguing stories this week is
one which deals with the incendiary issue of abortion. We don’t cover the
abortion debate too often, as it is well covered on dozens, if not hundreds, of
newsletters and websites and it tends to polarise readers. However, an
initiative of Iowa Planned Parenthood caught my eye. Its doctors are doing
abortions by telemedicine by prescribing the drug mifepristone to its rural clients.
This brings to the fore some interesting and
quite unexplored issues in medical ethics. Is medicine a personal relationship,
or just a service? Is the internet an adequate way of engaging in a doctor-patient
relationship? Can patient confidentiality be ensured? How can telemedicine
doctors ensure continuity of service?
This seems to be consistent with a growing
trend towards depersonalisation in society. Is it really where medicine should
go? Any ideas?
We are looking forward to a redesign of the
BioEdge website in the not-too-distant future. Do you have any suggestions to
make it more attractive and useful – for research, study or general interest? Get
in there early!
One feature that we are keen to exploit is the
Facebook paraphernalia which we have added recently. Try them out. It’s a very
easy way to share articles with your friends.
This week’s selection of articles is a bit
on the light side, with a YouTube video of a thrash death metal song from Fear
Factory about assisted suicide and a bizarre attempted murder in California
which might qualify as a “mercy killing”. But there are weighty stories
aplenty, as well…
With economic meltdown threatening in Europe and a catastrophic oil
spill in the Gulf, the US media still gave wall-to-wall coverage to the
controversy over Facebook’s privacy controls. Grandstanding congressmen were
demanding that Facebook make its rules simpler.
But when an opportunity came to debate a privacy issue which reaches
much further into people’s lives, the House of Representatives hardly paid
attention. By a vote of 357 to 32 it approved “Katie’s
Law”, a measure that will bribe state governments to help build up a national
DNA crime database. This was hugely controversial in the UK’s recent election
and one of the first promises made by the new government’s deputy prime
minister was to dismantle the country’s vast DNA database as a blot on British
liberties.
Why isn’t the US media taking this up? Whether
you approve or disapprove of a DNA database, you must admit that it is a major
civil liberties issue.
We have a few other stories for you this
week as well: reopening the debate over gay blood donors, organ donation in
Pakistan, the perils of ancestor testing, adult stem cells which rebuilt a
boy’s windpipe, and much more.
May I could share a personal reflection
with you? This is a job in which one reads about an astonishing number of
fruitcakes. I don’t mean people with strongly held convictions or vaunting
ambitions whom I take issue with. No, I’m thinking of Real McCoy fruitcakes.
The big story in bioethics this week is
clearly Craig Venter’s announcement that his team has created a synthetic
genome. No one greeted this with more enthusiasm than the Raelians, a bizarre
cult which believes that humans were created by aliens called the Elohim and
wants to clone humans as a path to immortality.
Their leader, Rael, a former French sports
journalist, says: "With Venter's achievement, we're witnessing the first
step toward the Elohimization of humanity that will bring the creation of the
first synthetic human being."
So, if any of our readers have Craig
Venter’s ear, perhaps they could tell him that he has a future as a cult figure
in addition to his other accomplishments.
Female genital mutilation is wrong, right?
So why has the American Academy of Pediatrics appealed for a relaxation of a
government ban on the practice? The AAP thinks that a blanket ban on an ancient
cultural practice will not work. Instead parents are going to haul their
daughters back to the old country where the procedure will take place without
anaesthetics, without hygiene, perhaps with a shard of broken glass.
Absolutely not, say the AAP’s counterparts
in the UK. They regard this notion as a shameful concession to repugnant and oppressive
gender-based violence.
The conflict of realism with principle is
fascinating. Where do you stand on this? Make a comment!
Early next week we will publish an
interview with distinguished American bioethicist George J. Annas about his
latest book, Worst Case Bioethics. Please visit the BioEdge website to check it
out.
Cheers,
Michael Cook
Editor
PS – you may have received a request for
donations from us this week. Please consider it carefully.
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| michael@bioedge.org
June 17, 2010