Dusting off the Leviathan

Canada is soon to have legislation permitting euthanasia and assisted suicide, as decreed by its Supreme Court. One issue, however, over which some uncertainty hovers is how much wriggle room should be left for doctors who have ethical objections to the new regime.

One of the country’s most influential bioethicists, Udo Schuklenk, who is also the co-editor of the journal Bioethics, contends that there is no room for conscientious objection in a modern health care system. Doctors have an ethical and legal obligation to provide legal and social useful services like euthanasia. If they don’t like it, they should get another job, just as other people do when they don’t like the boss’s orders.

Interestingly, the writers cite the 17th century philosopher Thomas Hobbes in support of their attack on the rights of conscience. The subject in Hobbes’s Leviathan has no need of an individual conscience, for “the law is the public conscience by which he hath already undertaken to be guided”.

Since Hobbes laid the foundation for the modern totalitarian state, this allusion seems ominous. Yes, there will be problems in trying to accommodate conscientious objectors. But the abolition of conscience leads to problems as well. Wouldn’t Schuklenk’s ethical framework work just as well in Saudi Arabia? If a doctor there refused to amputate the hand of a thief, would he argue that he should to get another job? If he refused to perform female genital mutilation, should he be fired because he has defied the law? 

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Losing one’s marbles

Former Austraiian Prime Minister Bob Hawke, who is now 86, has publicly backed euthanasia, even for teenagers. He says that he fears the indignity of "losing his marbles" -- something he is trying to keep at bay with crosswords and suduko. He told euthanasia activist Andrew Denton that his second wife, Blanche d'Alpuget, will know what to do if he ever reaches that stage. 

Acting as a poster boy for euthanasia is a sad end to a distinguished career. But it is, in a way, understandable. Dementia must be terrifying for people without adequate family support because of fractured relationships. And Mr Hawke, sadly, fractured his in a very public way by divorcing his first wife Hazel, who had been his spouse when he was Prime Minister, to marry his biographer, Ms d'Alpuget. 

Hazel went on to be one of the most respected and best-loved women in public life in Australia. People praised her honesty and courage when she admitted that she had been diagnosed with Alzheimer's disease. She even published a book about it. Eventually she had to enter a nursing home where she lived for four years before her death. Mr Hawke was not there to help her. 

For all of his intelligence and charm, Bob Hawke is wrong about euthanasia. Dementia is a disability and a civilised society does not solve the problem of disability by killing the disabled. The real indignity comes when the "abled" neglect their responsibility to care for the weak and vulnerable. 

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Genetic ties and the Archbishop of Canterbury

Justin Welby and biological father Anthony Montague Browne    

In events which seem copied from the script of a B-grade potboiler, the Anglican Archbishop of Canterbury, Justin Welby, has, at the age of 60, just discovered that he is not who he thought he was. After taking a DNA test to disprove rumours that he was not his father's son, he learned that the rumours were true. His real father was the last private secretary of Wnston Churchill, Sir Anthony Montague Browne. 

Despite his deep religious faith, the Archbishop seems quite shaken by the news. He surmounted a difficult childhood with alcoholic parents to become a successful oil executive and then an Anglican priest. He had no idea that the ne'er-do-well whom he regarded as his estranged father was not. In an interview with The Telegraph [London] he said:

“My own experience is typical of many people. To find that one’s father is other than imagined is fairly frequent. To be the child of families with great difficulties in relationships, with substance abuse or other matters, is far too normal.

“Although there are elements of sadness, and even tragedy in my father’s case, this is a story of redemption and hope from a place of tumultuous difficulty and near despair in several lives ... I know that I find who I am in Jesus Christ, not in genetics, and my identity in him never changes.” 

Although this is just an anecdote, it confirms what I've always regarded as one of the most important principles in contemporary bioethics: that every child deserves to know his or her biological parents. Archbishop Welby is better prepared than most to survive a personal earthquake like this, but it is an earthquake. To know who we are, to have a secure personal identity, is an important dimension of our autonomy. 

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Trump’s muddled thoughts on abortion

There’s probably no other country in which bioethics plays a greater role in politics than in the United States. Or at least one bioethical issue – abortion. The impending election is looking increasingly like a contest between fiercely pro-abortion Hillary Clinton and muddled anti-abortion Donald Trump.

This week Trump “misspoke” for the umpteenth time, but this time the topic was abortion. At first he declared that a woman who had one should be punished, a position which he changed within the day. Now he says that the doctor should be punished.

The ensuing storm in the media meant that Trump has become the only candidate to unite pro-abortion campaigners and pro-life campaigners. Both are angry: the former because women’s reproductive rights are threatened; the latter because it distorts their message.

Trump has acknowledged that he is a “convert” to the pro-life camp, but as a spokeswoman for the Susan B Anthony List, a pro-life lobby group, said, “The most obvious thing about his comments yesterday is that he has not thought about these issues deeply.”

Better said: abortion is one of the many issues about which Trump has not thought deeply. Unfortunately, my hunch is that this controversy, like past controversies, will do him no harm at all in his race for the nomination. But November may be a different story.

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More history of Nazi medical experiments

Hi there,

Next week the staff of BioEdge will be celebrating Easter, so there will be no newsletter. We shall resume early in April.

This week's issue contains a familiar but still sobering story about experiments by Nazi doctors during World War II, this time with an Australian twist. In dusty archives historians have uncovered the experiences of five Australian POWs captured in May 1941 in Crete. They were infected with hepatitis by an SS physician, Dr Friedrich Meythaler, to see how the disease was transmitted. Luckily none died of the disease. 

This is just a single thread in the tapestry of World War II horrors, although of special interest to Australians. What interested me was a coda by the German historian who is writing up the story, Konrad Kwiet, of the Sydney Jewish Museum. His mother and sister were both doctors and they actually were friendly with Dr Meythaler, who eventually became an eminence in German medicine in the post-War years. His sister was utterly astonished when he told her a few months ago about Meythaler's dark past. 

There is a well-worn moral to this anecdote, but one which cannot be repeated too often. Doctors need to be firmly and unconditionally commited to the dignity of all human beings. Otherwise they can easily succumb to the temptation to exploit vulnerable men and women in the course of following orders, or even more disgracefully, to advance their careers. 

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The yolk’s on me

I must confess that one of the most difficult things about editing BioEdge is that it is difficult to compose punny headlines. Any editor worth his salt wants to sprinkle a publications with puns. The Economist’s sub-editors are masters of the inobtrusive pun. I recall fondly a story about hallucinogenic mushrooms which was headed “Fungi to be with”.  

However, there is such a thing as taste – and ethics -- and puns over most of our stories would be either morbid or ribald. That’s one reason why I am looking forward to more developments with CRISPR. Some day I’ll be able to use “Ethics on gene editing CRISPR but no clearer” or “CRISPR holds promise of abundant fruit”. Sooner or later “Belgian govt’s waffle on euthanasia slated by ethicist” will come true. Or “Cloned baby to be named John-John.” Or “Euthanasia law comes into effect today” – but you need to be Australian to appreciate that one.

This is the kind of thing I think about a lot. So I was dismayed to read that bad puns may be a sign of a degenerative brain disorder. A new paper in the Journal of Neuropsychiatry & Clinical Neurosciences describes two patients afflicted by “intractable joking.” One was dragged along to the doctor by his wife because he kept waking her in the middle of the night to regale her with new puns he had just composed. The other lost his job after asking “Who the hell chose this God-awful place?” Scans showed that both had experienced damage to the right hemisphere of the brain.

I suppose their experience can be summed up in the old joke: “They laughed when I said I was going to be a comedian. Well, they’re not laughing now.”  Any ideas from readers about puns for bioethicists? 

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Coping with ALS

Neurodegenerative disease is often cited as a reason for requesting assisted suicide or euthanasia. So insights into the motivations of profoundly disabled persons who want to live -- like British physicist Stephen Hawking -- are valuable.

Another victim of ALS in the same league as Hawking is Mario Melazzini, the new chairman of the board of the Italian counterpart to the FDA in the US. He has been in a wheelchair for 14 years and is completely dependent upon carers. Nonetheless he expresses an infectious optimism about life.

When I started to look at my disease with fresh eyes, I understood it and made a fresh start on life. The moment I stopped thinking about what I could not do because of ALS, but what I could still do for myself, for my children and friends, my life changed …

Life is a gift, an asset which must be nurtured from the moment of conception to natural end, even with illness. Life must not be manipulated according to an ideology. We need to realise that in any condition, when properly supported, everything can be seen as a great opportunity … The only incurable thing is the will to live!

More about Dr Melazzini here and here

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Buck v Bell, one of the Supreme Court’s worst mistakes

Oliver Wendell Holmes Jr may have been the most influential justice of the past 100 years to serve on the US Supreme Court. He was a Civil War hero, a law professor, the oldest justice ever, and the subject of a best-selling biography and a Hollywood film.

Next year will mark the 90th anniversary of his most famous case, Buck v Bell. The Supreme Court ruled in an 8-1 decision that compulsory eugenic sterilization was constitutional. Holmes wrote the majority opinion in his characteristically crisp prose. As a direct result, many more states passed eugenic laws mandating sterilization of “feeble-minded” men and women. Nazi Germany modelled its even harsher laws on American legislation.

His words summing up the argument for eugenics have become notorious for their cruelty:

It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

The question that haunts the memory of Holmes is: how did he get it so wrong? How did America’s most eminent and admired jurist support an evil policy which played a part in the Nazis’ rationalisation of the Holocaust? Holmes may have been the only justice cited in defence of Nazi war criminals at the Nuremberg trials.

Holmes was not alone, of course. As we report in an article below, eugenics was a wildly popular policy in early 20th century America, especially amongst the better sort of people, like the Boston Brahmins into which Holmes was born. As we enter a new era of do-it-yourself eugenics with better technology for genetic editing, it is urgent to understand why our predecessors were so blind, lest we repeat their mistakes. 

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Should mental anguish be enough to qualify for euthanasia in Canada?

Canada’s legislators are still wrestling with how to frame a new euthanasia law. One interesting contribution to the debate comes from a senator who became a mental health advocate after her husband, a former member of Parliament, committed suicide in 2009. Senator Denise Batters suggests that psychological suffering should be excluded as a grounds for euthanasia.

"I have seen ... the devastating impact, not only for the individual that goes through that pain themselves ... but at the same time ... I've seen the devastating consequences that it can have on the immediate family members," she said in an interview with The Canadian Press.

"Canadians may support assisted suicide, but they want extremely strong safeguards and I think that when I talk to people about the possibility of psychological suffering being included as ... sole grounds for having access to physician-assisted suicide, they are horrified and stunned that could be a possibility," she said. “There aren't many, many thousands of people in this country who have lived through a period of severe anxiety and depression and come out the other side".

The senator is right. What people who are suffering psychologically need is more personal and better medical support, not a lethal injection. 

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Celebrating Dutch euthanasia

Oh no; not again. Sorry: about half of our articles this week are about euthanasia, most of them about the Netherlands. I know that there are other issues, but this time I shall blame the news cycle. NVVE, the leading Dutch right-to-die group, is celebrating 15 years of Dutch euthanasia this week.

Depending on your point of view, the festivities are either premature or long overdue. The law legalising euthanasia in the Netherlands came into effect on April 1, 2002, which means that NVVE is actually celebrating the beginning of the 15th year.

On the other hand, euthanasia was effectively legal in the Netherlands for decades before that. A 1991 government study, the Remmelink Report, found that in 1990 there had been 2,300 cases of voluntary euthanasia, 400 cases of assisted suicide, and 1,040 cases of involuntary euthanasia. That was 25 years ago, so perhaps that is a better baseline for the celebration. 

Legalisation clearly has drawbacks, though. The number of cases of illegal, involuntary euthanasia is no longer included in official government statistics. O for the candour of the Remmelink Report! 

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