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.
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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.
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?
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!
Sorry to disappoint you, but this week's newsletter is late and briefer than usual. I plead moving house, a first-world problem which poses one of life's more stressful challenges. Next step, moving office.
This week's news that the abortion rate in the US has fallen to its lowest level in 40 years – since Roe v. Wade – was welcomed by both sides of the abortion debate. But they immediately began to fight over why it had declined. Broadly speaking, there are two explanations.
The first, offered by the Guttmacher Institute, the abortion think tank which produced the statistics, is that more young women are using long-term contraceptive devices and medical abortions.
The second is that 40 years of incremental restrictions on abortion and pro-life activism are finally beginning to bear fruit. As statistician Priscilla Coleman notes, "Nationally, the abortion rate declined by 13 percent, with particularly steep declines in mid-western states that enacted laws during the study period, regulating service provision and reporting (e.g., Kansas down 35 percent and South Dakota down 30 percent)."
The Guttmacher Institute insists that these laws are not having much impact. But this doesn't square with complaints from the abortion clinics for whom it lobbies.
As we report in a story below, abortion providers in the northeastern US are incensed at the behaviour of Stephen Bingham, a doctor who runs a network of shoddy clinics in at least six states which have poor standards and bad business practices. “The more expensive and inaccessible that abortion becomes,” one provider told the New York Times, “the more it creates a space for a [Kermit] Gosnell or a Brigham to operate.”
My impression is that the abortion industry may be caught in a vicious circle of decline. Slowly growing support for the pro-life cause eventually brings about stiffer laws, despite Roe v. Wade. An unfavourable legal climate makes abortion an unpopular speciality for competent doctors and shonky operators step in to fill the gap. This tarnishes the image of abortion and makes it possible for politicians to enact even more restrictions.
My feeling is that abortion in the US is on the skids. What do you think?
Back again. It's been a long time between drinks. Unfortunately, after a Christmas break, we had to deal with a mountain of other work and it took a while for the BioEdge wheels to creak into motion.
We're back with a different style of newsletter. This was foreshadowed in one of my notes last year. Instead of providing all of the text in the newsletter, we will only provide headlines, together with a brief description of the content. To read the complete story, just click through to the website.
The new format is cleaner, more attractive and easier to use. We are particularly keen to make it work well on mobile devices. If you notice any snags, please tell us.
2013 has been quite a year in bioethics, but, of all the topics, it seems that Belgian euthanasia was of the greatest interest to BioEdge readers. We’ve collected the ten stories which had the greatest number of hits in the lead story for this issue.
I am going on a holiday directly after Christmas, so BioEdge will not resume until late in January. Until then, all the best for a Happy Christmas and New Year!
Sometimes, I must confess, bioethical debates can become tedious and in my darker moods I wonder whether the whole shebang is worthwhile. It’s not just me, either. There is a steady stream of bioethicists who moan that bioethics is broken, or hopelessly compromised, or philosophically confused.
But then someone like Darigha Nazarbaeva speaks her mind and it’s clear that we need bioethics and bioethicists.
Unless you live in Kazakhstan, Darigha Nazarbaeva may not be a household name. But there she is the equivalent of Hillary Clinton and Madonna bundled into one. The daughter of Kazakh President Nursultan Nazarbayev, she is also an amateur opera singer who has sung in Paris and Moscow, the former head of the official state-run news agency, a member of Parliament and the heir presumptive to the Presidency. She is not a person to be messed with.
"I think that from time to time children should be taken to orphanages, to institutions for disabled children, so that they see the results of an unreasoned, premature sex life. Show them these children, these disabled freaks, let them look at them."
It was a bizarre outburst which suggests she needs a lot more education about disability. It is disturbing that a possible future leader of a country with nuclear weapons and vast mineral wealth is contemptuous of people with disabilities, that she knows so little about the origin of disability and that she has so little sympathy for the social problems which give rise to unmarried mothers.
Bioethicists are not the only answer. But without well-informed, reasoned discourse, how can you expect politicians to make humane decisions?
Perhaps we should create a Hug-Your-Neighbourhood-Bioethicist Day.
The death of Nelson Mandela this week at the age of 95 is a reminder for me, at least, of how powerful human dignity can be in history. The notion of "human dignity" (usually in scare quotes) has been dismissed by a number of bioethicists as " flawed, fuzzy and unhelpful" or as just plain "stupid". Of course dignity is a bit fuzzy; most concepts that do a lot of heavy lifting are. But it is no more fuzzy than the alternative ethical criterion on offer, autonomy.
Mandela was the embodiment of dignity, in all its senses. He was a man who commanded respect and admiration, even veneration, because of the way he comported himself and dealt with others. But he also believed that every human being was worthy of respect because they possessed an inalienable dignity. As he wrote in The Long Walk to Freedom, "Any man that tries to rob me of my dignity will lose". Mandela was a pragmatic politician, but these were more than fine words. His strategy of nation-building through truth and reconciliation demonstrated his consistency. As a slogan, dignity was more powerful than even prosperity or nationalism.
Does this have any relevance for bioethics? Indirectly, yes. Apartheid, the system which Mandela fought and dismantled, led to terrible inequities in health care and created conditions which helped to make South Africa the AIDS capital of the world. All because respect for human dignity had been lost – or rather because the ruling National Party had redefined who is human.
The dreadful, deadening, dreary ideology of apartheid was (almost literally) gospel truth for South Africa's politicians. It was undemocratic, violent, and unjust to the blacks and coloureds, but it was supported by the whites. It was even defended as doctrine of Christianity by the Dutch Reformed Church, in defiance of all other denominations. Apartheid's defenders included intelligent, well-educated, even well-meaning people. But these qualities did not keep them from colluding in what is now regarded as a paradigmatic case of an unjust government.
Human dignity is powerful in the hands of heroes like Mandela, but fragile, oh so fragile, in the hands of ethical pygmies.
Last year BioEdge had a world scoop when it was the first to report the publication of an article about infanticide in the Journal of Medical Ethics. “After-birth abortion: why should the baby live?” was irresistible fodder for the tabloid media. As they say in newsrooms, it had legs.
While some authors might have luxuriated in the publicity, Francesca Minerva, the corresponding author, did not. She received hundreds of abusive emails, including some death threats. Dealing with the fall-out robbed her of precious time and tranquil reflection in the ivory tower.
So she proposes in the journal Bioethics this month that contributors to academic journals should be able to make anonymous contributions. This will spare them the pain of publicity and to foster daring expeditions into the realm of dangerous ideas.
While I am sorry about the abuse, I am surprised by Dr Minerva naiveté. Everyone knows that the internet is a dark jungle of nastiness, of venomous creepy-crawlies and sabre-toothed carnivores. I moderate comments on BioEdge and MercatorNet and I have seen the most innocuous articles bucketed with bile. In her case, she was advancing ideas which have real world consequences. People living in the real world were bound to respond.
More than anything else, it is anonymity that generates the nastiness on the internet. I fail to see how anonymous publication in academic journals will function differently, albeit with Olympian sneers instead of four-letter words. Anonymity brings out the very worst in people. When they do not feel that they will be held to account, they lose their balance and perspective. Are bioethicists really that different?