ACT acting up again


Hi there,

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?

Any ideas?

Cheers,
Michael Cook
Editor

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Send them in


Hi there,

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.

Cheers,

Michael Cook

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Indian bioethics


Hi there,

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?

Is anyone out there better informed?

Cheers,

Michael Cook
Editor

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IVF blunder in Singapore


Hi there,

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?

What do you think?

Cheers,
Michael Cook
Editor

 

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Late, sorry


Hi there,

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.

Cheers,

Michael Cook
Editor, BioEdge

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How should we treat disabled infants?


Hi there,

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?

Cheers,

Michael Cook
Editor

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Bob Edwards and his Nobel gong


Hi there,

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.

Cheers,

Michael Cook
Editor

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More shameful syphilis experiments by US doctors


Hi there,

Before I forget, there will be no BioEdge next week, as its staff are on holiday. Back on October 16!

Bioethics stories seem to come in waves. Sometimes it’s stem cells, then euthanasia, then organ donation. This week, it’s institutional abuse and lack of informed consent.

From Bulgaria comes a report on homes for mentally disabled children. It makes harrowing reading. In a country which is a member of the EU, mentally-disabled children have been allowed to starve to death in orphanages. And then from Denmark comes a report about lobotomies. These were banned there in the 1980s, but not before 300 mentally disabled children had the discredited operation.

But the most shameful of these stories comes from Guatemala. In the 1940s American public health officials deliberately infected nearly 700 men and women with syphilis without their consent. Worst of all, those overseeing the project were fully aware that this breached ethical standards. An American researcher uncovered the experiments in some dusty archives.

President Obama has been on the phone to his counterpart in Guatemala apologising for these violations of human rights. So he should.

Cheers,
Michael Cook
Editor

 

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Felicific calculus


Hi there,

Some time ago I reviewed a book by David Benatar, a South African utilitarian, whose view of life was so bleak that the headline was “the ultimate miserabilist”. The theme of Better Never to Have Been: The Harm of Coming into Existence, is that we all would be better off had we never existed. As the old Jewish joke goes, "Life is so terrible, it would have been better never to have been born. Who is so lucky? Not one in a hundred thousand!"

It turns out that the same utilitarian argument can be applied to animals. Jeff McMahan recently argued in the New York Times (see below) that carnivores cause such dire suffering in the animal world that we (homo sapiens) should organise their extinction as soon as possible.

I highlight this only to suggest that the “felicific calculus” of utilitarianism can produce peculiar answers. The ultimate utilitarian, Peter Singer, has become the guiding light of the animal rights movement because he wants to decrease suffering in chicken farms and laboratories. However, the same principle also leads to McMahan’s extinction idea.

It seems to me that utilitarian thinking, however compassionate it may sound, has a dark side. Taken to its logical extreme, the best way to eliminate the suffering of living beings is to eliminate the living beings. Does this say something about utilitarian arguments for euthanasia? Should we look elsewhere for an answer to the perennial problem of pain?

Cheers,
Michael Cook
Editor

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The BBC and euthanasia


Hi there,

Journalists are amateur bioethicists. Not just yours truly, but all of us who supply the news. And sometimes journalists have their own agenda. Another instance of this came to the fore this week in the UK. Ray Gosling, a veteran broadcaster and gay rights activist, was found guilty of wasting police time by fabricating a cock-and-bull on-air confession about mercy-killing a lover with AIDS some time ago.

It turns out that the story – which cost British taxpayers a pretty penny to investigate – was a complete fabrication. The 71-year-old told the court that “I would have done it. I would have, the tenses were wrong.”

As the judge pointed out, a bit more than the tenses were wrong: “You know the power of television celebrity and the trust the public and television producers have in you. You have to match this with the responsibility of identifying and telling the truth to the public.”

But, to my mind, the real scoundrels in this fantasy were the BBC producers whom Gosling told about the “murder” and did nothing. For them it was just an appealingly sensational yarn. They did not shrink from collaborating with Gosling’s aggressive promotion of euthanasia. Isn’t that evidence of unabashed prejudice on the part of the BBC, Britain’s premier source of news?

Any comments from the UK?

Cheers,

Michael Cook
Editor

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