Does the Indian Surpreme Court need better bioethics advice?


Hi there,

Bioethical developments in India are not widely reported elsewhere. But the case of Aruna Shanbaug, which was decided by India’s Supreme Court this week, could have far-reaching consequences. Ms Shanbaug has been in a permanent vegetative state for nearly 40 years. In 1973 she was a nurse on duty at King Edward Memorial Hospital in Mumbai when she was savagely sexually assaulted by a wardsman. Ever since the hospital staff has taken care of her magnificently. The Court praised them as an example for all of India.

The justices declared that Ms Shanbaug should be allowed to live because she had such loyal friends, rejecting a request from an activist who felt that her life lacked human dignity. However, it set down principles which were poorly informed and badly phrased. It failed to distinguish between “passive euthanasia” and withdrawal of burdensome treatment and it appears to assume that ordinary nutrition and hydration is life support.

I wish that the learned jurists had sought advice from some competent bioethicists before laying down the law. See the story below or check out the video on the website

Cheers,
Michael Cook
Editor

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The tragedy of Rachel Nyirahabiyambere


Hi there,

It’s always best to wait for both sides of a story to emerge. But a New York Times report makes Georgetown University Medical Center and the US health system look quite heartless. After the children of a brain-damaged Rwandan migrant without health insurance could not pay for hospitalisation or nursing care, her feeding tubes were removed and she is slowly starving to death in a Maryland nursing home.

There will certainly be further developments in this breaking news. Not only is it a case study in medical ethics, but it will also give ammunition to opponents of President Obama’s healthcare program. They will surely use it as an example of what “death panels” could do. Stay tuned. 

Read the story below.

Cheers,

Michael Cook
Editor
BioEdge

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The puzzle of locked-in happiness


Hi there,

Heading up our list this weekend is a remarkable story about locked-in syndrome (LIS). Personally, I cannot think of anything worse. Even quadriplegic Christopher Reeves was able to give speeches, run a foundation and inspire supporters of his favourite causes. But someone with LIS can only communicate by blinking. A French journalist, Jean-Dominique Bauby, made it better known in his book (later turned into a film), The Diving Bell and the Butterfly.

But I might be wrong about this. Belgian neuroscientist Stephen Laureys has surveyed several dozen LIS patients in France and found that most of them believe that they are leading happy lives. This challenges preconceptions about unbearable suffering and about the usefulness of living wills. Only 7% were interested in euthanasia.

There are some caveats to this optimistic picture and the main one is that happiness comes only with time. The shock of suddenly becoming utterly immobile and dependent is devastatingly demoralising. It probably leads many patients initially to think that they would be better off dead. However, after a year or so, most of them feel that they are living happy and meaningful lives.

It is this caveat that Oxford’s utilitarian bioethicist Julian Savulescu seizes upon in his response to this research. He makes the radically pro-choice argument that LIS patients should be able to have euthanasia whenever they want. This is the case even if their subjective well-being will be substantially greater if they wait a while.

I am not a philosopher, but shouldn’t an informed choice lead you to choose something good? If the content of a choice makes no difference to a moral decision, what exactly is the point of ethics anyway? Whatever I choose is going to be the right choice, so why bother thinking about it? Perhaps some philosophers out there can enlighten me.

Cheers,
Michael Cook
Editor

 

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Inhumane treatment of elderly in UK hospitals


Hi there,

What drives people to consider assisted suicide and euthanasia is the thought of becoming dependent and undignified. Speaking personally, I would respond that dependence of one sort or another is part of the human condition and that a caring and compassionate society will not allow people to die without dignity.

But I have to admit that this week’s report on care for the elderly in institutions run by the National Health Service takes the wind out of my sails. There is a danger of sensationalising its horrifying stories: surely not every elderly person in UK hospitals is treated with heartless bureaucratic inhumanity. But the picture that the Health Service Ombudsman paints is bleak:

“The reasonable expectation that an older person or their family may have of dignified, pain-free end of life care, in clean surroundings in hospital is not being fulfilled. Instead, these accounts present a picture of NHS provision that is failing to meet even the most basic standards of care.”

In increasingly atomised and cash-strapped Western nations, I fear that things will only get worse. Pressure for euthanasia is bound to grow – but not because it is a human right, as alleged by campaigners, but because it will make caring for unproductive elderly cheaper. As the proportion of over-65s soars in the coming decades, will there be a greater challenge in bioethics?

Cheers,
Michael Cook
Editor

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Donor offspring report from Australian Senate committee


Hi there,

As the business of assisted reproductive technology becomes more and more widespread, more and more people are asking whether it needs to be closely regulated by governments. After all, as many as one baby in 20 or 25 are born from IVF in some countries. Society has an interest in ensuring that health and human rights are protected.

However, the IVF industry generally opposes government regulation, arguing that it is perfectly capable of policing its own affairs. This viewpoint, however, was dowsed with a bucket of cold water in this week’s report from a committee of the Australian Senate on donor-conceived children. It found that

  • “some clinics are being accredited, even when they are not following the [National Health and Medical Research Council] Guidelines”
  • “the accreditation process appears to lack transparency”
  • “anonymous donations are still being used or accepted in clinics, in breach of the NHMRC Guidelines”
  • “this system of industry regulation has failed donor conceived people”

While government regulation brings its own problems, it seems clear that private clinics are more interested in profit than in the rights of the children they usher into the world. Stiffer regulations and a government ombudsman seem absolutely necessary. What do you think?

Cheers,
Michael Cook
Editor

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Gene of the week


Hi there,

Biopolitical Times, at the Center for Genetics and Society, has an entertaining feature – its nominations for “gene of the week”. This highlights genetic hype – genes for everything ranging from IQ to breast cancer to debt. It has even cited a journal article which alluded to a genetic disposition for hybrid cars, chocolate, science fiction movies, mustard and jazz.

This may seem comical, but it is also dangerous. The result of the last serious bout of genetic determinism was Auschwitz.

That is why it was so disturbing to read in the New York Times recently that a US judge had handed down a relatively harsh sentence to a man convicted of possessing child pornography because he had a “porn gene”. Trouble is, there’s no such thing. The judge simply asserted that he was sure that it would be discovered within 50 years. Talk about blind faith!

Admittedly, genetics is a powerful influence. But there is still no evidence that all of our behaviour is genetically determined. Is it a worrying sign that a Federal Court judge thought so?

Read the article and leave your comments.

Cheers,

Michael Cook
Editor

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Philadelphia’s abortion scandal


Hi there,

I really felt quite shaken after reading the recent report of a Philadelphia Grand Jury. This outlined the case for prosecuting one Dr Kermit Gosnell, who ran an abortion mill (for want of a better term) only a few minutes walk away from one of America’s finest hospitals.

It was a filthy clinic which ignored all the statutory safeguards on paperwork, staffing, cleanliness, informed consent, patient privacy… you name it. It’s the kind of thing you think might exist in a third-world slum where draconian laws ban all abortions. But it happened in Pennsylvania, where abortion is legal up to 24 weeks. Gosnell has been charged with murder and infanticide, along with a long list of other offenses.

Worse still, the people who were supposed to regulate the clinic never visited it and ignored complaints for decades. Their criminal irresponsibility is the more interesting dimension of this ghastly business. Why were they so negligent? If they had stirred themselves, at least two young women would be alive today – and many babies. Any ideas?

Cheers,
Michael Cook
Editor

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back from holidays


Hi there,

We’re back after summer (we write from the southern hemisphere) holidays with lots of plans for the new year.

High on the agenda is a redesign of the BioEdge site – nothing too radical, but after several years it needs to be refreshed. We also want to incorporate Facebook and Twitter into the service we offer.

Did you know that if you “friend” BioEdge, you can get an RSS feed which delivers links to your Facebook page? It’s definitely worthwhile. Just click here to see BioEdge on Facebook.

In the not too distant future, too, we plan to survey our readers to see how we can improve the newsletter. But if you have any ideas for us now, please send them to us.

Cheers,
Michael Cook
Editor

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Christmas break


Hi there,

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.

Cheers,
Michael Cook
Editor

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Wikileaks


Hi there,

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.

Cheers,
Michael Cook
BioEdge

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