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.
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?
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!
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.
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.
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!
I’m sure it’s just randomness and not something in the water, but often our newsletters seem devoted to a theme, be it euthanasia, or IVF, or stem cell research. This time, unfortunately, it’s skulduggery.
Below you can read about a Los Angeles doctor who has just been sentenced to 30 years in jail for prescribing powerful pain-killer to drug addicts, some of whom ended up dead. Then there’s another euthanasia scandal in Belgium in which a 37-year-old woman died at the hands of an incompetent doctorafter being diagnosed with autism. (Autism? Are you kidding?)
The most colourful, however, is the on-going controversy surrounding trachea surgeon Paolo Macchiarini, who made headlines for creating artificial windpipes with stem cells. It turns out that his research, his CV and his romantic life all involve a fair bit of unsubstantiated creativity. Some of his patients died, too.
No surprises here. Human nature being what it is, there are bound to be a few bad apples in the medical barrel.
But it should lead us to reflect that governments need to take the possibility of misconduct very seriously when they are crafting legislation for the new genetic technologies. An English academic recently wrote in The Guardian that “playing God with our genes … is a good thing because God, nature or whatever we want to call the agencies that have made us, often get it wrong and it’s up to us to correct those mistakes.”
But if it is people like the doctors above who are playing God, it’s very likely that they will make irreparable mistakes. If scientists want to sack God, they should think very carefully about the CVs of the persons who will be moving into his office.
The US Department of Health and Human Services has ruled that that transgender people are entitled to sex-change surgery provided under Medicare Advantage insurers. An Air Force veteran, Charlene Lauderdale, sought coverage for her transitioning surgery in November 2014 but it was denied because it was not the proper treatment for her, as she had been hospitalised four times for psychiatric problems.
It turns out that the board reached its decision in a rather unusual way. In 1981 Medicare described sex reassignment surgery as “controversial” and “experimental” and said that it should not be covered. When this was appealed in 2013, the Centers for Medicare & Medicaid Services (CMS) declined to defend the old determination. The only evidence presented to the appeals board was submitted by advocacy groups supporting the “aggrieved party”. The CMS presented not one sentence of evidence.
Our legal system is adversarial and its integrity depends on an honest clash between opposing points of view. Why did the CMS throw in the towel? Did it really believe that there is no scientific evidence whatsoever which might question the benefits of transgender surgery? It certainly exists.
Their conclusions are also quite sobering: “The prevalence of suicide attempts among respondents to the National Transgender Discrimination Survey (NTDS), conducted by the National Gay and Lesbian Task Force and National Center for Transgender Equality, is 41 percent, which vastly exceeds the 4.6 percent of the overall U.S. population who report a lifetime suicide attempt, and is also higher than the 10-20 percent of lesbian, gay and bisexual adults who report ever attempting suicide.”
Bioethics must always be based on evidence. Ignoring contrary evidence, as the HHS seems to have done, not only corrupts the legal process, it could do immense harm to vulnerable people.
The Atlantic recently published a feature about the early days of artificial reproductive technology. The headline was: “The First Artificial Insemination Was an Ethical Nightmare: The 19th-century procedure involved lies, a secrecy pledge, and sperm from a surprise donor”.
It turns out that the first pregnancy with artificial insemination (at least in the US) was in 1855 in New York but it ended in a miscarriage. The first successful pregnancy with the same method took place in Philadelphia in 1884.
The patient was a married woman whose husband was infertile because of venereal disease. Without seeking the consent of either husband or wife, the doctor anaesthetised her and inseminated her with the sperm of one of his medical students. The women never discovered the truth and the students were sworn to secrecy.
However, when her baby was a 25-year-old businessman one of the students published his recollections of the event (after contacting the child). As far as he was concerned, artificial insemination was a eugenic boon, “a race-uplifting procedure”, which would produce children of “wonderful mental endowments” instead of “half-witted, evil-inclined, disease-disposed offspring”.
The author of the article in The Atlantic was amused by the old-fashioned lies, secrecy and donor anonymity. But has any of that changed? Most children born from contemporary reproductive technologies are “genetic orphans”. Most parents shop for donors who will confer “wonderful mental endowments” upon their offspring. Plus ça change, plus c'est la même chose.
In his State of the Union address President Obama announced a cancer moonshot: an ambitious plan to cure cancer. "The same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease," he said.
Oops. He didn’t say that. Richard Nixon did in his 1971 State of the Union address. “We want to be the first generation that finally wins the war on cancer,” then-Vice President Al Gore said in 1998. “For the first time, the enemy is outmatched.”
It’s not just the politicians who know how to cure cancer. Scientists make big promises as well. In 2005 the Director at the National Cancer Institute, Andrew von Eschenbach, said “Our plan is to eliminate the suffering and death that result from this process that we understand as cancer, and we are committed to a goal of doing so as early as 2015.”
That commitment was made only ten years ago and cancer is still the second leading cause of death in the United States.
It’s great to feel optimistic, but one has the feeling that promises like these are made to distract voters from other issues. “It’s a bit utopian at this point,” agreed Barrie Bode, a professor at Northern Illinois University and a 20-year cancer researcher, told MarketWatch. “It’s like saying we need to fix the economy once and for all. Right, like that’s going to happen,” he said.
However, if you are looking for a job in cancer research, now looks like a very good time.