If you search in Google News for “eugenics”, the principal story comes from North Carolina. Its legislature recently voted to distribute US$10 million to victims of its former eugenics law. Of the 7,600 people who were involuntarily sterilized in North Carolina, only about 200 are still alive. But compensation is a gesture worth making.
As a state task force said, “The compensation package we recommend sends a clear message that we in North Carolina are a people who pay for our mistakes and that we do not tolerate bureaucracies that trample on basic human rights.” It was a resounding repudiation of one of the vilest aspects of the 20th century.
So it’s a bit odd to read that British academics are promoting eugenics all over again. In a discussion paper sponsored by the Wellcome Trust, the world’s second-largest private funder of medical research, they argue (see article below) that there is nothing wrong with improving the human gene pool, as long as it is done voluntarily and ethically. They don’t support any the nasty stuff which went on in North Carolina and Nazi Germany – only do-it-yourself eugenics with IVF and embryo selection.
The authors spend much of their energy in deconstructing the word “eugenics”. It is such an emotionally-charged term that it is almost impossible to use it in public debate. But even if you overlook its link to the Nazis and state bureaucracies, do-it-yourself eugenics is morally corrupt. First of all, it necessarily involves discarding large numbers of human embryos. Second, it involves one person treating another person as a thing to be manipulated and reshaped according to his own ideas.
Anyhow, this is a large and complex issue which requires a good deal of thought. DIY eugenics is certainly going to become more common as the technology for selecting genes (and sex) become cheaper. We should be prepared.
Belgian surgeons have quietly announced that they have a new source for lung transplants – euthanased patients. Of course Belgium is a small country, but between 2007 and 2012, one in eight lung transplants came from patients who had donated them after voluntary euthanasia.
From a pragmatic point of view, it makes good sense. It must be easier to plan out the operation and the lungs will be healthy. Of the six patients who were killed by their doctors, 3 suffered from severe neuromuscular disease (presumably ALS or motor neurone disease) and 3 from a “neuropsychiatric disorder”, presumably depression or schizophrenia.
However, pragmatic considerations are not necessarily the only ones to be considered when lives are at stake. Is it really ethical to kill a patient for his organs? However rosy a picture the doctors paint of this procedure, this is what it amounts to. Another article below points out that it is possible to implant false memories in people’s minds. Surely it is possible to implant a desire to make an altruistic donation in a sick patient.
This is a significant development. It shows that if euthanasia is legalised, there will – almost inevitably – be abuses, sanctioned, of course, by ethics committees and the government. The human body is a valuable commodity; doctors are bound to think that it would be a crime to let it go to waste.
American psychologists have discovered that just thinking about science helps people to act more ethically. Researchers at the University of California Santa Barbara have described the results of their social priming experiments in PLoS as the first study “to systematically and empirically test the relationship between science and morality”. (See BioEdge article below.) They conclude that “Thinking about science leads individuals to endorse more stringent moral norms and exhibit more morally normative behavior.” Better, in fact, than science’s main competitor, religion.
This is an issue of great interest, of course, in bioethics. How can we be sure that doctors will not defraud the government, abuse patients, traffic in babies (see below), or euthanase patients without their consent? Perhaps medical associations should buy all their members copies of the Feynman Lectures on Physics or some other classic of the scientific method.
But before going to all that expense, why don’t we apply a bit of common sense to this research? The researchers don’t seem to have a finely developed sense of irony. Wasn’t it only recently that one of the world’s experts in social priming – who did many experiments similar to this one -- Dutch psychologist Diederik Stapel, was exposed as a massive fraud who had simply made up a substantial portion of his research results? “I see a train wreck looming,” wrote Nobel laureate Daniel Kahneman in an open email to psychologists who work in social priming: “your field is now the poster child for doubts about the integrity of psychological research”.
Exposure to the scientific method didn’t make Mr (he was stripped of his doctorate) Stapel more ethical. Curiously, Mr Stapel is not mentioned in the PLoS article. Perhaps something more than scientific method is required to nudge people into acting morally.
Australia goes to the polls in two weeks time. Election night is always one of the highlights of the year for me, but this time I’ll be following closely the fortunes of a new party which is fielding candidates in New South Wales, South Australia, the Northern Territory and the nation’s capital. This is the Voluntary Euthanasia Party, headed by activist Dr Philip Nitschke.
The VEP is clearly a single issue party and has no chance of winning, but Dr Nitschke’s vision extends beyond medical ethics to economics and finance. Writing in the Canberra Times recently, he argued that voluntary euthanasia would be useful little good cost-cutter at a time when governments everywhere are tightening their belts.
This is a policy which he has been advocating since 2005. “While no one in the Voluntary Euthanasia Party is an economist, and no one is saying we should put people down against their will,” he writes, “we are suggesting it is a worthwhile debate to have - especially if hundreds of thousands, if not millions, of dollars in the health budget could be saved or redirected.”
I cannot honestly say that I am one of Dr Nitschke’s fans. But I do admire his candour. You always know what he thinks. I wonder how many others support dying with dignity for the reason he has so forthrightly proposed.
In a time of increasingly stretched finances, how much should attention should a doctor pay to his patients’ financial resources? Health care is the leading cause of bankruptcies in the US, more than credit-card bills or unpaid mortgages. So a “viewpoint” in the latest JAMA argues that doctors should make an investigation of “financial harm” a standard feature of consults. For example, they might tell a patient:
“Even though your insurance will cover it, I don’t think that back imaging will help us. Most back pain like yours gets better on its own within 4 to 6 weeks. The risks of radiation and the high cost outweigh any possible benefits. What were you hoping to find out with a scan?”
I am just a layman but that sounds reasonable. Patients ought to be aware of the financial consequences of their decisions, if only to avoid nasty surprises.
However, I was taken aback by the authors’ analogy with medical harm. Doctors should not resign themselves to the financial ruin that their patients may face as a result of expensive care, they contend. “Providing true patient-centered care should not replace physical ailments with distressing fiscal harms.”
But if the adage, “First, do no harm”, is redefined to include financial harm, doesn’t that mark a major change in the patient-doctor relationship? Advising patients of the psychological or social harms of some procedures is often deemed to be patronising or patriarchal. Medicalising “financial harm” seems to be a very dangerous way of framing high medical bills. What do you think?
"The first person to live for a thousand years is possibly already alive", claim longevity advocacy communities. They believe this fervently. Aubrey de Grey, the British biomedical gerontologist, who is possibly the best known voice for wildly extended human lifespans, recently donated $13 million of an $16.5 million inheritance to research into “engineered negligible senescence”. This doubles the budget of his foundation.
I wonder what he would have to say about The Wolverine, the latest X-Men blockbuster. (I have a weakness for B-grade sci-fi; here is a link to the trailer.) Logan, the mutant whose professional moniker is Wolverine, is certainly on track to live a thousand years. From the rather murky backstory, it appears that he is about 200 years old and has fought in every war he possibly can. Because of his particular mutation his body regenerates rapidly, almost instantaneously, from trauma. In the latest film, he gets stabbed, impaled, shot, slashed (lots of ninjas and samurai in this one), poisoned and incinerated. But, even better than Silvio Berlusconi, he always bounces back.
Does this make The Wolverine happy? Not on your nelly. Having accumulated too much toxic life experience, he wants to shuffle off this mortal coil ASAP. But he cannot die.
This raises the very interesting question of whether Aubrey de Grey is squandering his inheritance. What exactly is the point of living a thousand years if you become a soul as tormented as the Wolverine? Any ideas?
This job has an occupational hazard: watching YouTube videos. The excuse is finding entertaining clips which illustrate some point or other. I’m afraid that the point often gets lost.
Anyhow, I was gobsmacked yesterday by a clip from Mark Dice. Now admittedly Mr Dice is one strange dude. He is a youngish right-winger crusading against the New World Order and the Illuminati. But he has a cheeky grin and is incredibly brazen. One of his stunts is to ask people on beachside promenades to sign a petition.
What is of more relevance to us at BioEdge is a petition to support mandatory euthanasia for senior citizens and terminally ill. People briskly sign as Dice drones on: in these hard times we gotta bring healthcare costs down… they’re draining the healthcare system… to save our tax dollars… birth date, please… it’s mandatory… keep traffic reduced… just putting the old people to sleep if we deem it necessary to save costs… it’s mandatory… it’s a provision in Obamacare and they want to take it away… it’s a lot cheaper that way… just print your name there… if they’re a drain on the system, we’re just gonna get rid of them…birth date, please…
I’m sure that holidaying Americans are not really as heartless as they seem in this clip. They probably don’t understand the big words, the reasoning and the implications of what was being asked. It really makes me question the reliability of polls about assisted suicide and euthanasia. What do you think?
Another research scandal from the 1950s has been uncovered, this time in Canada. As Xavier Symons reports below, Native American children in boarding schools were suffering from vitamin deficiencies. Researchers withheld vitamin-rich food and dental care to see what would happen. The children were malnourished and hungry, and instead of feeding them properly, the researchers treated them like guinea pigs. “It’s not just bad ethics, it’s bad science,” observed a Canadian bioethicist.
This is just the latest in a dreary list of studies from the 1940s, 1950s and 1960s in which “volunteers” participated in studies without informed consent. Sometimes the participants suffered permanent damage, but it was covered up by the scientists.
But very little has been written about informed consent in the development of IVF. I suspect that if you scratch the surface you will discover many violations of fundamental principals of research ethics. Indeed, this was one of the main criticisms levelled at Edwards and Steptoe when they were developing IVF. “Is it justifiable to carry out these procedures solely for the purposes of obtaining ova for in vitro experiments, which in themselves offer no immediate benefit to the patient?” asked Britain’s leading gynaecologist in 1971.
In less sophisticated language, this is exactly the complaint made by one of “volunteers” in Steptoe’s research in a recent book (see below). “I had been simply used, as a piece of experimental meat as I laid anaesthetised on Steptoe’s operating table in that Oldham hospital.”
I hope that someone eventually has the energy and courage to revisit this sorry chapter in the history of assisted reproduction.
As I was drafting this newsletter, another lurid story from Texas popped up on my news feed. Although police are still investigating, it seems that four elderly men may have been kept captive in a suburban dungeon for as long as ten years in a suburb north of Houston. They were living in a group home and the owner was taking their Social Security cheques in exchange for lodging, beer and cigarettes. However, their lodging was a linoleum floor, it had no toilet and there was so little food that three of the men were suffering from malnutrition. They were locked in.
Stories of elder abuse like this are bound to increase as the population ages. With the fracturing of families, many elderly or mentally disabled people are alone in the world. What the Texas case suggests is that there exist people so cold-hearted that they are capable of exploiting their misery. The unfortunate men in Houston were commodities who were worth more alive than dead to their captors.
It strikes me that this is one of the strongest arguments against legalised euthanasia. What if the bottom line had been different? If they were worth more dead than alive? Will carefully drafted laws really stop unscrupulous carers from pressuring vulnerable elderly into accepting euthanasia? It is worth thinking about.
On another note, I'd like to honour the memory of Dr Amin Abboud, a dear friend who died suddenly this week at the age of 48. In 2001 he helped me launch BioEdge, although in those days we called it Australasian Bioethics Information. He was a medical doctor with a deep interest in bioethics. When he passed away he had nearly completed revising his philosophy PhD on Peter Singer's utilitarianism for a publisher. (He is quite critical, from the bits I have read.)
In recent years he had very little to do with BioEdge, but we always appreciated his advice and encouragement. In 2006 he was ordained a Catholic priest of the Opus Dei prelature and redirected all his energy into his new tasks. I shall miss him.
One of the issues to which we often return in BioEdge is the rights of conscience. It seems to be wheeled out for all sorts of jobs. On the one hand, conscience is viewed as the lodestar of an honourable man, as in Martin Luther King Jr’s influential “Letter from a Birmingham Jail” – which was written almost exactly 50 years ago, in April 1963.
On the other hand, conscience is dismissed as an excuse for mollycoddling intransigent eccentrics. Standing for this point of view we have Oxford bioethicist Julian Savulescu. He wrote a few years ago in the BMJ, “When the duty is a true duty, conscientious objection is wrong and immoral. When there is a grave duty, it should be illegal. A doctors' conscience has little place in the delivery of modern medical care.”
This week I noticed two women politicians invoking conscience, but in very different ways and with very different outcomes.
The Pennsylvania Attorney-General, Kathleen Kane, has refused to defend the local Defense of Marriage Act against a challenge brought by the American Civil Liberties Union. She indicated that it was against her conscience and to support it would be unethical. Constitutionally, she is within her rights, apparently, however surprising her decision may seem to most voters. However, the move may well boost her popularity, as she apparently aspires to be the state governor or a Federal senator.
In Ireland, on the other hand, an up-and-coming minister in the government, Lucinda Creighton, refused to support her own party’s abortion bill. As a result, she has been expelled from the parliamentary party, the Fine Gael, and has lost her position as a minister. She was philosophical about the loss of her job. Following her conscience was more important.
The two cases are not quite analogous, of course. But the contrast is vivid enough to provoke some reflection. One politician invokes her conscience and burnishes her career. Another invokes her conscience and ruins it. One is applauded for breaking, if not the law, at least long-standing convention. The other becomes a political pariah for honouring long-standing conventions.
Did they have the same thing in mind when they invoked their consciences? It’s a conundrum, but more and more of such cases seem to be cropping up. We need to clarify what the rights of conscience are.