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May
04
  1:15:14 AM

The guys who make the rules always win

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Hi there,

I was bowled over when I read about a family in Utah whose life was turned upside down after using a home genetics kit (see below). They discovered that John Branum was not the biological father of Annie Branum. Instead the biological father was Tom Lippert, a disgraced lawyer working at a fertility clinic linked to the University of Utah where Pamela Branum had artificial insemination in 1991.

“Disgraced” is a polite way of saying that Lippert died of alcoholism and that he had served two years of a six-year sentence for the lurid kidnapping of a coed in 1975. He tried to brainwash her into falling in love with him. In short, he was both kinky and a fruitcake.

It turns out that Mr Lippert not only prepared, labelled and shipped "samples" around the country, he had also been a frequent donor at the clinic. Behind his desk were photos of the clinic’s “success stories”. Mrs Branum now suspects that it could have been his bragging board. Why not? Mr Lippert was a very, very strange man.

However, a committee has produced a report for the University of Utah which says that it would be unethical to attempt to notify couples of Tom Lippert’s possible handiwork. It would upset people too much, it is unlikely to uncover more wrong-doing, it is very difficult, a dog ate the paperwork, it would breach privacy agreements, it’s not the University’s fault anyway, no one has been hurt, things are different nowadays and so on.

These arguments don’t convince the Branums and they don’t convince me. IVF must be the only industry in the world which can get away with excuses like that after catastrophic systemic failure. The one essential thing IVF clinics promise is the right baby. But they won’t test to ensure delivery. And if they fail, they will refuse to investigate the scope of the disaster for fear of hurting people’s feelings. If General Motors could play by those rules, would it be in bankruptcy court now? 



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April
27
  1:33:28 AM

The Washington Post changes its mind

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Hi there, 

Good on the Washington Post! It certainly takes a principled stand in its editorial on stem cell research. Not even its potential for curing dread diseases is sufficient reason to cross a bright line, it argues. “The creation of human embryos specifically for research that will destroy them is unconscionable. The government has no business funding it.”

Unfortunately, that was in 1994 (October 2). Almost exactly 20 years later, the Post took a very different line. An editorial this week argued: “As long as scientists do not cross ethical lines much farther from where they are now … researchers should have the flexibility to go in whichever direction is scientifically useful.”

As Emerson once said, “a foolish inconsistency is the hobgoblin of little minds.” No one can blame the Post for recalibrating its positions with the years. But a 180-degree turn is a different matter.

The 1994 editorial warned of the “slippery slope”. Anyone who denies that this lacks force as an argument should read both editorials carefully. Twenty years ago, the “deeply alarmed” Post said that creating embryos for experimentation was “flat wrong”. Now it says that “Some ethical worries are reasonable, but they are not enough reason to hold back this research.”

What is very discouraging in this comparison is not so much the change in the Post’s position as its decline in moral sophistication. Back in 1994, it recognised that serious ethical issues were involved. The issue could not be decided simply by acquiescing to scientists’ demands. Now its position is essentially that the only thing that matters is financial and scientific success. Is this really progress? 



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April
12
  2:36:11 PM

Lost in translation

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Hi there,

I just finished reading the obituary of an American scholar of Persian studies – who had nothing whatsoever to do with bioethics, as far as I know. What caught my eye was the fact that he spoke fluent Russian, German, Arabic, Persian, Pashto, French, Uzbek, and Turkish, as well as being able to cipher out ancient languages like Avestan, Pahlavi and Sogdian. Pretty good for a boy from Birmingham, Alabama.

Being a polyglot would be a big help in reporting on bioethics. Unfortunately, the only languages your editor is fluent in are English, American, Kiwi and Australian. Developments in countries where English is not the lingua franca are underreported. Google Translate is a treacherous guide -- traduttore, traditore, as they say in Italian. So, for the most part, we are stuck with reporting what happens in English-speaking countries, even if significant developments occur elsewhere.

Perhaps that is why this week’s lead story has flown under the radar, even though it did appear in the English-language Journal of Critical Care. It seems, as far as I understand it, that intensive care doctors in Belgium have decided (decreed may be a better word) that it is acceptable medical practice to euthanase their patients, even if they are not suffering, even if they are not elderly, even if their relatives have not requested it, even if they have not requested it and even if it is not legal.

The lead author, Dr Jean-Louis Vincent, of the Free University of Brussels, attempted to justify this policy in a leading Belgian newspaper, Le Soir, in February but the news must have ground to a halt at the language barrier.

I do hope that critical care physicians in other countries protest this development. Surely it cannot be good for their specialty. How many Belgians will trust their mother’s doctor when she is seriously ill if he has the power to decide whether she lives or dies? 

An administrative note: BioEdge will not be published next week because of the Easter holiday.

Cheers,



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April
06
  12:22:08 AM

The bioethics of the search for MH370

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Hi there,

After a month of false leads and dashed hopes, it is time to question whether the search for the lost Malaysian Airlines flight 370 is worthwhile. This is the question posed by Glenn Cohen, a professor at Harvard Law School, recently.

Cohen is being deliberately provocative, but since the cost of the search will probably run into hundreds of millions of dollars, it’s a utilitarian question worth pondering. He points out that US$100 million (a very conservative estimate of the cost) could save 52,192 life years if the same amount were spent on vaccinating children.

No governments have asked this question; they are blindly determined to find the plane and learn the fate of the 239 people on board. Cohen lists a few of the reasons why: to learn what went wrong to prevent future incidents, to bring closure for relatives, and to satisfy the voyeuristic instincts of media consumers.

To these should be added: ingratiating themselves with China (most of the passengers were Chinese) and promoting regional cooperation in a dangerous area of the world.

Cohen says that this may just be an example of our bias toward identifiable lives over “statistical lives”, a point often made by Peter Singer. There is certainly more than a germ of truth in this, but something tells me that there is more to it.

Ultimately, the only excuse for the existence of governments is defending the common good. A government which is indifferent to the welfare and emotional needs of its citizens will not last. Disaster victims have been treated so abominably in the recent past in China that the new President, Xi Jinping, is probably desperate to portray himself as a defender of his restless citizens’ rights. His government’s stability may depend on it. That may be the strongest reason for continuing the search.

Any thoughts? 



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March
30
  12:59:53 AM

The fundamental issue behind donor anonymity

tags: bioethics, donor anonymity

Hi there,

This week we’ve tried to give the gist of one of the most surprising arguments I’ve come across in a long time. Bioethicist Inmaculada De Melo-Martín contends in most recent issue of The Hastings Center Report that a ban on sperm and egg donor anonymity is misguided, unnecessary, socially harmful and “morally problematic”: in short, unethical. (Read all about it here.)

It’s quite a thought-provoking paper. IVF clinics defend donor anonymity on pragmatic grounds: unless donors are guaranteed anonymity, they are unlikely to donate. But I’ve never read a robust ethical defence.

Melo-Martín’s central idea is that we construct our own lives; we are not condemned to act out a genetic script. So what can possibly be the problem if you are “a genetic orphan”? We have plenty of other resources – family, friends, society -- with which to build an identity. There is a germ of truth in this in this repudiation of genetic determinism. I may have a gene which predisposes me to like chocolate, but this does not condemn me to eke out a pitiable existence as a chocoholic.

But there's something more to this than meets the eye. The debate over donor anonymity hinges on the most fundamental issue in contemporary bioethics: what is the body for, anyway? Are we simply spirits “fastened to a dying animal”, as W.B. Yeats wrote in “Sailing to Byzantium”? In that case, our burdensome bodies are of no great ethical significance. I think that Melo-Martín belongs to this school of thought. It’s a kind of revival of Platonic dualism.

The more common sense Aristotelian view is that persons are somehow body and spirit, neither one nor the other, but both simultaneously. It’s difficult to explain, but it corresponds to our experience. We do write our own script in life, but our genes are just as fundamental to our life experience. Without knowing our mother and father, we feel incomplete or at least we feel that something is lacking. In other words, our bodies are not something that we possess, but are an integral part of who we are. This week's story on surrogacy exemplifies this approach. 

The dialogue between Platonism and Aristotelianism has been going on for about 24 centuries, so it’s unlikely to be solved soon. But it’s not merely an academic bunfight. As the controversy over donor anonymity shows, it continues to affect vital contemporary issues.

Cheers, 



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March
22
  10:30:31 PM

Playing with fire

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Hi there,

One of America’s leading bioethicists, Thomas H. Murray, of The Hastings Center, has called for a national debate on so-called “mitochondrial transfer” (see below). This is a highly controversial technique for allowing parents who might pass on a genetic disease due to defective mitochondria. It is being studied in both the US and the UK.

What I have realised in the few news stories I have written on this topic is that its ethical assessment depends on how the technique is framed.

This begins with its name. Is it really just transferring 1% of genetic material to an embryo – which the name implies? If so, perhaps it’s not a big deal – although, as I recall, 1% or so is the difference between us and chimpanzees. Or is it really a transfer of the 99% of genetic material which resides in the nucleus to a new cell membrane? (See below). That sounds a bit more serious, doesn’t it?

Then there are the benefits. The child, conceived through IVF, is supposed to have healthy mitochondria and will be free from the genetic disease passed on by its mother. That frames the mitochondria as interchangeable computer chips. But is that true?

In one of the stories below US biologist Maureen Condic challenges this assumption. She says that there are dangers in this technique. What if some of the old mitochondria remains in the cell and clashes with the new mitochondria? Plus, the DNA in the nucleus and the DNA in the mitochondria are supposed to be a perfect match. What guarantee is there that they will function properly? Is it possible that the technique might create a new genetic disease?

I don’t know the answers to these issues, but I do know that these difficulties do not fit within the frame of the scientists who are boosting it. They confidently dismiss warnings about “three-parent embryos” but they speak very vaguely about the risks to the child’s health inherent in “mitochondrial transfer”. At its best this is hype; at its worst it is cynical manipulation of public ignorance.  

The scientists are playing with fire. As science communication expert Matthew Nisbet points out, “As in the case of climate change, each time a scientific claim is proven false or inaccurate; it risks further alienating publics already distrustful of the science and scientists.” 



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March
15
  11:51:32 PM

Reasons for sticking around

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Hi there,

Rational suicide is an idea that has a long history, but it is being revived now in the debate over euthanasia and assisted suicide. More and more one reads tweets and comments like “no one has the right to tell me whether I can choose to die”. In fact, the co-editor of the prestigious journal Bioethics, Udo Schuklenk, recently argued that even people suffering from depression could make a rational decision to end their lives. “What’s the point of existing if, on balance, you don’t think it’s worth it?” he asks.

Normally the opposition to this point of view is said to be Christianity. After all suicide has always been condemned by Christian churches. Not all that long ago, suicides were to be buried at night at a crossroads with a stake through their heart. The last Englishman to be given this harsh treatment was a student who had murdered his father and then killed himself – in 1823.

However, the theme of a recent best-seller by a confirmed atheist is that there are powerful secular reasons for opposing suicide. In Stay: a history of suicides and the philosophies against it, Jennifer Michael Hecht speaks from a communitarian perspective. Suicide does immense harm to the world around the person who wants to depart this world.

“No matter how much of a burden a person thinks he is, it is nothing compared to the burden of his suicide. People do wrenching damage to their communities when they kill themselves. Studies have shown that when parents of children under 18 kill themselves, their children are three times more likely to kill themselves than children who make it to 18 with both parents alive. When one person in a community kills him or herself, the suicide rate in that community spikes.”

Hecht insists that her arguments have little to do with assisted suicide or euthanasia for medical reasons. But since these are increasingly being used as ways to escape the pain of living rather than the pain of disease, her thoughts are certainly pertinent. Check out her advice for stopping the epidemic of suicide in the military and among students.

There’s lots more in this week’s BioEdge. Check out the stories below.

Cheers, 



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March
09
  1:16:26 AM

Conflicted over slippery slopes

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Hi there,

I suspect that people who use the expressing “I’m feeling conflicted” are mostly American, so I avoid it. However, when discussing slippery slopes, synonyms like doubtful, faltering, irresolute, undecided, or wobbly don’t do the job. I am conflicted.

The slippery slope is derided as a logical fallacy, which it would be if it describes necessary consequences. But it seems to describe a reality if we take into account lawyers’ searching for loopholes or bioethicists searching to push back the frontiers of repugnance.

One example of this in this week’s newsletter is Switzerland’s famous assisted suicide law. Apparently this was first proposed almost a hundred years ago to help a few victims of unrequited love and wounded honour. It was only in the 80s that the cobwebbed loophole was discovered by right-to-die groups. Since then hundreds have died. Isn’t that a slippery slope?

Perhaps a century is too gradual to be called a slope. I spotted a swifter version in a startling article in the Journal of Medical Ethics about why it might be good for children to have not two, not three, but four or many more genetic parents. Quite a lot of the reasoning by British bioethicist John Harris evokes the slippery slope for me. Here’s an example:

If we find it morally unproblematic that people who cannot achieve natural reproduction rely on assisted reproduction to have genetically related kin then we find no reason why this should not hold also for non-couple partnerships for whom simultaneous genetic kinship is currently prevented.”

Let’s put this in Plain English. If, back in 1978, when Lesley and John Brown wanted their own genetically-related baby, we invented IVF, then now when Tom, Dick, Harry, and Sarah want their own genetically-related baby, we should invent “multiplex parenting”.

I admit that logic has never been one of my strong points (I'm a journalist, right?), but the “if… then” construction looks curiously like a slippery slope to me. Does anyone else think so?

Cheers, 



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March
02
  12:22:47 PM

Barcoding embryos

tags:

Hi there,

First things first: the company which distributes our emails, AWeber, is struggling with some very nasty hackers at the moment. No personal information has been compromised, but their website is on a roller-coaster ride. If you have trouble reading the links below, please click through to the BioEdge website.

* * * * *

About the bioethics of tattoos... As a child in a small American town I used to visit a tobacco shop to buy my sweets. One hot day the quiet man behind the counter with a thick Polish accent had rolled up his sleeves. I remember seeing a number tattooed on his inner forearm. It was an odd tattoo, but I didn’t ask him about it. I was more interested in the sweets.

Perhaps I should have. Perhaps I would have learned a few things about how people can treated like boxes in a warehouse. All these years later, that man’s tattoo spells out dehumanisation for me better than any textbook.

Which is why I was revolted by an article in the January issue of the journal Human Reproduction which was sent to me by a thoughtful BioEdge subscriber.

Researchers in Barcelona have come up with an “exciting” and “novel” system for tracking embryos and eggs in IVF clinics: barcodes. They have successfully attached biofunctionalized polysilicon barcodes to the outer surface of the zona pellucida.

There is always a risk of mixing up the eggs and embryos belonging to clients of the clinics. How often this happens no one knows, but it has happened. It is quite devastating for everyone concerned. The researchers think that this will solve the problem.

But isn’t this another version of the number on the forearm? Embryos/children are being branded like cattle and given numbers instead of names. Reproduction is becoming less like love and more like manufacturing. I wish the Barcelona scientists well, but does anyone else think that their idea is seriously creepy? 

Cheers,



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February
23
  10:43:23 AM

Present at the creation

tags:

Hi there,

The bioethicist whose name appears most frequently in BioEdge must be that of Art Caplan, who currently teaches at New York University Langone Medical Center. To be honest, I disagree with him on a wide range of significant issues. But what he says is always worth engaging with and vigorously written. He is a great communicator.

The Cambridge Quarterly of Healthcare Ethics has persuaded him to pen some reflection on his career. I found them both interesting and moving. His interest in healthcare ethics may have begun when he spent months in hospital as a seven-year-old with polio. He recovered from that, but never forgot the lessons he learned there about death and patient care.

He belongs to the second generation of academic bioethicists, and learned a lot from the first generation. “The key to being able to make my way down a tiny, barely carved-out path in an emerging new field was having had supportive, smart, and very tolerant mentors,” he writes.

Caplan made a conscious decision to enter the public arena by making himself available for comment and by writing for publications for the general public. This has left him open to criticism from other bioethicists for dumbing down the field and from people like me who take issue with his positions. But his motives are admirable. It takes courage, too, to put your head up in the trench warfare which is bioethics nowadays.  

“Many of my peers felt that democratizing bioethics through the media was wrong-headed and worse. I knew from my mentors there would be a price to pay if I pushed down that road, but it is one that I gladly paid since my intuition was right—bioethics had to be more than a purely academic exercise. The public had to be engaged and the media was the only tool available to engage it.”

We need more bioethicists who have Caplan’s self-confidence and ability to communicate. And, of course, they should always agree with me!

Cheers,



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