"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.
Here’s an advertising idea which needs a report from a consultant bioethicist. Sky Deutschland (part of News Corp, but not related to the British Sky) is considering a novel channel for advertising – bone conduction through window glass.
The idea is that weary commuters often rest their heads against the windows of trains. At unspecified intervals, a spoken message is broadcast through the glass. No one else can hear the words. The video below shows startled commuters wondering where the message came from.
The BBDO advertising agency told the BBC: "If our customer Sky Deutschland agrees, we will start with the new medium as quickly as possible. Some people don't like advertising in general. But this is really a new technology. [It might] not only be used for advertising, but also for music, entertainment, mass transport information, weather reports and so on."
I don’t know much about psychiatry, but mightn’t a device like this spark latent paranoia in a few people? Isn’t there something creepy about invading people’s privacy in this way? Shouldn’t you ask for informed consent to plant an idea directly in people’s heads? Isn’t there something fundamentally different between this and ads on a TV screen?
As for me, I have already made up my mind. I won’t be waiting for the consultant’s report. The video shows that the message is transmitted through tiny black box which is linked to the window by a wire. I may never have the opportunity, but if I ever do and if anyone from Sky Deutschland out there is listening, I swear I am going to rip the wire out.
This week’s decisions from the US Supreme Court on same-sex marriage could quickly lead to more bioethical dilemmas. As we pointed out last year in BioEdge, surrogacy agencies in India and the US are looking forward to a clear legal status for same-sex marriage, as it would increase the demand for surrogate mothers.
Dr Samit Sekhar, of the Kiran Infertility Centre, in Hyderabad, told BioEdge: “Yes, we have a sizeable number of gay population that visit our clinic to have a baby using the services of an egg donor and we have seen an increase in the number of gay couples and single men approaching our clinic as soon as legitimacy to their public union is granted in their respective states or country.”
Indian authorities have recently made gay surrogacy more difficult, but demand will surely shift to other countries like Guatemala, Cyprus or the Ukraine. Even in the US, Dr Jeffrey Steinberg, a prominent IVF specialist in California, told us, legalization sparks a surge in demand for surrogates for gay couples.
This is an angle of the same-sex marriage debate which is seldom discussed. The stability of gay marriage means that some couples will adopt children. But no matter how pretty a picture the clinics paint, surrogacy on an industrial scale is exploitative and often dangerous. It’s an issue that deserves to be highlighted.
Sorry, it has been a busy weekend and I am afraid that this issue of the BioEdge newsletter is being sent out rather late.
Last week the media was full of news about the US government’s surveillance of the internet. As everyone knows by now, companies like Facebook, Google, Microsoft and Yahoo allow the National Security Agency to trawl through their records to prevent terrorist attacks. The US may be sharing some information with intelligence agencies of other governments as well.
Which leads one to ask whether privacy is possible any more. The bioethics angle on this is genetic privacy. It turns out that a skilled number-cruncher can identity participants in genetic research studies by cross-referencing their DNA with publicly available information.
When people become aware of this, will they be willing to disclose their genetic data to researchers? Is it ethical for researchers to store their records in the cloud? What safeguards must scientists and doctors take to ensure the privacy of participants and patients?
There are a lot of questions that need to be asked in the wake of Edward Snowden’s revelations.
Just as I was about to put BioEdge to bed, a couple of Wall Street Journal articles by Naftali Bendavid about euthanasia in Belgium popped up on Google News. They appeared just as the Belgian Parliament reached a consensus on allowing euthanasia for children who request it.
The articles present two very different images of euthanasia. The first is joyful and serene.
"It's something they are looking forward to," says one doctor who has euthanased more than 20 patients. "That sounds paradoxical, but it is the only way to step out in a dignified manner, having control over their life and death, and they see it as a kind of party. They are surrounded by loved ones, they sing songs sometimes. It's very, very strange."
The second is bureaucratic, lonely and stark. Tom Mortier, a chemistry lecturer, learned via email that his mother, who suffered from depression, had been euthanased. Then he received a bill for transport of the body to a science lab where it would be dissected. It was a sad way to die. "What the doctor does is like a god," Mr Mortier told the WSJ. "He decides if the life is worth living or not."
The Belgian media have enthusiastically embraced the first framework for euthanasia, with numerous features appearing about the beauty of choosing the time of one's departure. But I wonder if the experience of Mr Mortier’s mother is really the more common one.
Over the past ten years, more than 5,500 Belgians have been euthanased. Did they all step into the dark clinking champagne glasses and singing cabaret songs? Somehow I doubt it. But that is one of the many things which remains murky about legalised euthanasia. We need more information.
If you have an interest in how legalized euthanasia works, our lead story is quite compelling. (It is the first time that the news has appeared in English.) Dutch doctors are now allowed to take into consideration the suffering of parents when deciding whether or not to give a child a lethal injection. This is an interesting development. What will happen when the same principle is applied to the elderly? Will the tears of their middle-aged children decide whether they live or die?
Although bioethics deals with living beings and robot ethics deals with machines, their destinies are intertwined. As you can read in this week’s article about the development of Lethal Autonomous Robots (LARs), scientists, armies and politicians need to create ethical “codes” for killing machines. And quickly.
At the moment a human operator instructs a drone to release its missiles. But the time is not far off when the drones will “decide” for themselves. And since their decision-making power needs to be programmed by someone, who better than bioethicists?
The great science fiction writer Isaac Asimov created his famous Three Laws of Robotics as long ago as 1942. These are useful, but they really don’t apply to what currently worries the United Nations about these new weapons. The First Law is that no robot may harm a human being – but several countries are designing robots whose main function is to kill.
The task of creating a robot ethics will be harder than it seems. The fractured history of bioethics offers a cautionary tale: are they to be utilitarian robots, or deontological robots, or principalist robots, or feminist robots, or what? Anyhow, I suspect that there will be job opportunities for unemployed bioethicists with programming skills in the near future…