Will there be a moratorium on gene-editing?


A California family was outraged recently when their grandfather was told that he had very little time to live by a "robot", or rather, what the media described as a robot. In fact, it was a teleconference screen mounted on a robot lectern. I don't suppose that the distinction makes much difference. The elderly man's children and grandchildren were horrified by the cold detachment of the procedure. 

The hospital apologised, of course, but the incident is symptomatic of the impersonality which pervades our culture. Prodded on by our love affair with technology, human relations are being reduced to formal interactions. It may be overstating it to say that competence in face-to-face contact is a dying art -- but something is changing. To have a dozen Facebook "friends", for instance, is hardly the same as having a dozen friends. 

But an even more -- I was thinking of inserting the word "sinister"  but I won't -- application is the reduction of human sexuality to the twin and separable functions of recreation and reproduction. In an article below, British IVF pioneer Simon Fishel predicts that robots will handle the whole process of conception, from harvesting gametes to transferring embryos. 

It seems to me that defending humane relationships will be one of the key challenges to bioethics in the coming decades. 




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Parents request sperm retrieval from West Point cadet


It often takes a newsworthy tragedy to make us think deeply about difficult ethical issues. One example is our lead story this week. The parents of a brain-damaged West Point cadet, Peter Zhu, asked a court to order a hospital to retrieve his sperm so that the family name can be carried on. No sooner said than done. Justice John P. Colangelo, of the New York Supreme Court, Ninth Judicial District, directed Westchester Medical Center to collect the sperm and have it stored. A court hearing will be held on March 21.

The outcome of this case will be interesting, partly because it pits ethics based on family ties against ethics based on personal autonomy. Peter’s parents know that they cannot get their son back, but they believe that they have a right to a possible child to carry on the family name. But bioethicists point out that grandparents do not have a right to a grandchild and that Peter never consented to such a procedure. A family's tragic loss is shaping up as a clash of cultures, collective versus individualistic, Asian versus Western. 




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Womb transplants. Euthanasia


Colombia is a country that flies under the radar as far as euthanasia goes. But it has one of the most progressive legal frameworks for euthanasia anywhere. (See article below.) Children over the age of 6 can request the right to die (with the approval of their parents). It may also be one of the jurisdictions where it is least used. Euthanasia has been permitted since 2015, but only 40 people have taken advantage of it -- according to official records. Unofficially, there may be many more. As in other countries, activist doctors who are impatient with red tape take the law into their own hands. 

And bizarrely, Colombian voters have had no say in this momentous legal change.  “We have not had a big national debate about this, and I’m not very happy about it," says a former Colombian health minister. “We need a public debate: We are not Belgium or Holland – this is at odds with people’s beliefs and mode of thought.” It would be good for a team of bioethcists to study the situation in Colombia with the same rigour as they have in Belgium, the Netherlands, or Canada. 




MORE ON THESE TOPICS | euthanasia, euthanasia for children
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The hottest topic around


It’s hard to think of a more volatile topic than transgender transitions for children entering puberty. The number of kids demanding puberty-blockers so that they can transition to the opposite sex is exploding all over the developed world. It’s a mysterious and poorly understood phenomenon which involves a range of bioethical issues.

Is gender dysphoria really a medical issue at all? Or is it just a waystation on a spectrum of sexualities? How do we decide? Is it ethical to offer treatments which have yet to prove their efficacy? Is it ethical to offer treatments which will have negative side-effects? How can children make decisions which will affect their whole lives without understanding the medical, sexual and psychological implications? There is enough here to fill a library with contending points of view.

But this is far from being a theoretical issue. Children with gender dysphoria are suffering now. Who is to decide how can they be best cared for? A bioethicist writing in the American Journal of Bioethics effectively argues that parents are not the best judges. (See article below.) They are in the same position as loving, well-intentioned parents who want to use herbal remedies for their child’s cancer. Doctors, backed by governments, should decide. The state has to step in to save the child from suffering and even death.

It’s a controversial, even incendiary, point of view. But that is the way the debate is heading. We can expect to hear more, much more, in the future.




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Great stories this week


Hi there,

We have a range of interesting and provocative stories this week. In our lead, Australian doctors are in the eye of a political storm over refugees. In a pattern familiar in other countries, conservatives and progressives have been battling for years over immigration policy. To over-simplify: a new law makes two doctors – not government officials or politicians – the gatekeepers who decide whether refugees currently living off-shore in special camps need medical treatment in Australia. It is sure to be an election issue.

Consent is fundamental to contemporary medicine. So why can’t Dr Evil, a British body modification artist, ply his trade on fully-consenting adults? A court in the UK has ruled that there are limits to the kind of harm that can be inflicted, even if people consent. Dr Evil’s case shines a new light on some medical procedures.

And, astonishingly, the involuntary euthanasia of possibly as many as 34 elderly patients in two Catholic hospitals in the city of Columbus has been almost ignored outside of Ohio.

There’s lots more. Just follow the links below.

Cheers,




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We’re back, again!


Hi there,

Apologies for the non-publication of BioEdge last weekend. We're back on track now.

In the meantime, we have managed to create a new mobile site for BioEdge. More and more of our readers are accessing the newsletter with smartphones. The old links were hard, if not impossible, to read. I think that you will find the new links much better. 

We'd appreciate your feedback, though. There are always bugs in every new system and we'd like to identify them as soon as possible. 

Cheers,




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Sorry, guys


Hi there,

Sorry, but the editor (aka me) is still under the weather. There will be no BioEdge this week. Next week we should be back on track. See you then.

Cheers,

Michael Cook
Editor  




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How to avoid another gene editing scandal


Dear readers, 

This week's edition of BioEdge includes a range of stories from around the world. Two articles focus specifically on the recent Chinese gene editing scandal. A commission is being organised by the US National Academy of Medicine to write new guidelines that deal specifically with gene editing projects involving human embryos. This is a step in the right direction. Though perhaps more needs to be done to prevent rogue scientists from carrying out unauthorised research involving new biotechnologies. If a scientist is intent on conducting unethical research, they will always find a way to rationalise their work.

Xavier Symons 

Deputy Editor 




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BioEdge is back—almost


Dear readers, 

A very Happy New Year to you! Unfortunately our editor, Michael Cook, is ill this week. We will be back again next week with a full edition of BioEdge. 

Best wishes, 

Xavier Symons

Deputy Editor 




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Happy Christmas! Happy New Year!


The staff of BioEdge will be taking a break as of next week until mid-January. All the best to our subscribers and their families for a Merry Christmas and Happy New Year. If you have any ideas for articles or for improving the website, please let us know. Cheers,

Michael Cook
Editor




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Science under Xi Jinping


It’s hard enough for doctors and scientists to resist the allure of profit in a democratic society, as an article below about Australian cosmetic surgery demonstrates. But when science becomes an arm of government propaganda, the pressures must be immense.

The picture is still cloudy, but the Chinese scientist who edited the genome of two babies, He Jiankui, seems to have succumbed. According to a Chinese bioethicist working in New Zealand (see article below), he was a dazzling star who was reaching the “commanding heights”, as President Xi Jinping had exhorted Chinese scientists to do earlier this year in a major policy speech.

Xinhuanet, the official newsagency, reported that Xi told scientists and engineers to have the “courage to explore the uncharted courses and realize the goal that key and core technologies are self-developed and controllable.”

Now He, having embarrassed the government over the questionable ethical standards of his work, has disappeared. He may be in jail. This must surely send mixed message to his colleagues. Be ethical and obscure. Or see what you can get away with and become gloriously rich.

It must be hard to be a scientist in today’s China.




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He did it


Many scientists were aghast this week when a Chinese expert in CRISPR, He Jiankui, announced the birth of gene-edited twins – probably the world’s first “designer babies”.  

Dr He is being described as a “rogue scientist” who ignored the rules. But that is the way that whole field of reproductive technology has advanced. Bob Edwards, who won the Nobel Prize in Medicine for developing IVF, never sought ethics approvals or worried about the safety of the children.

In fact, he was an unashamed eugenicist. As Edwards said in 1999: “Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” Edwards did not even seem to worry about the higher rate of birth defects among IVF children. They were just collateral damage of the “clinical imperative”.

Yet now Bob Edwards is regarded as a hero -- because his risky experiment worked. 

I think that it is a bit unfair to label Dr He as a rogue. In fact, his robe-tearing, scandalised colleagues agree that editing the human genome is ethical. They are just worried that he did not tick all the boxes and do all the paperwork. This is very bad public relations for them and for the Chinese government.

In fact, given the deteriorating place of human rights in China at the moment, He Jiankui will be lucky to escape a long prison term -- or even execution – to regild the government’s tarnished image as a watchdog of uber-ethical science.




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The Nature of transgender


With people as wise as former US Vice-President Joe Biden asserting that transgender equality is the “civil rights issue of our time”, it’s no surprise that the world’s leading science journal agrees. In a scathing editorial late last month Nature argued that the Trump Administration’s “proposal for defining gender has no basis in science”.

There is no doubt that many bioethicists would agree with Mr Biden. In fact, a psychotherapist raised a storm in the British media this week with his interpretation of the crisis. It’s just that he took a view 180 degrees opposed to Nature. “In 20 years’ time, I believe we will look back on this folly as one of the darkest periods in the history of modern medicine,” wrote Bob Withers.

Despite trans Twitterstorms twisting and weaving their way across the bioethical landscape, it seems that the science and ethics of transgender issues is far from settled. It’s worthwhile listening to both sides of the debate. 




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Celebrating the reproductive revolution


Occasionally we tag one of our articles “reproductive revolution” because it exemplifies how far law and technology take us once sex has been detached from reproduction. This week’s tale comes from India. A team at Galaxy Care Hospital in Pune has performed India’s first successful uterus transplant. A 45-year-old mother donated her womb to her 28-year-old daughter who eventually gave birth to a healthy baby girl.

Arrangements like this are no longer newsworthy, but what made the transplant necessary? It turns out that the young woman had had at least two abortions and these had damaged her uterus. Frankly, I find this fertility-at-any-cost approach a bit bizarre.

But not more bizarre than some of the other stories: the Dutch sperm donor who may have fathered 1000 children, the Japanese man who is raising 13 children by commercial surrogates from Thailand, the 65-year-old German grandmother who gave birth to quads, the German zoophile who is in a “relationship” with his Alsatian because “Animals are much easier to understand than women” and so on.

The reproductive revolution was originally intended to give loving couples the joy of having children of their own. How differently it has turned out. As they say, “Like Saturn, the Revolution devours its children."




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Michelle Obama’s IVF kids


As sometimes happens, most of our stories this week centre on assisted suicide and euthanasia in various jurisdictions. However, our lead story is about Michelle Obama's revealing memoir, Becoming, which will be released this week around the world. In various pre-publication interviews the former First Lady discloses that after she had a miscarriage she and her husband resorted to IVF to have their two daughters Malia and Sasha. 

When she was about 34, she realized that "the biological clock is real" and that "egg production is limited". "I think it's the worst thing that we do to each other as women, not share the truth about our bodies and how they work," she told Good Morning America. Perhaps her advice will prompt young women to try to have their children earlier. Somehow the message just doesn't get through: women can't have children whenever they want. Fertile women who delay having a family are probably the best clients of the IVF industry. 




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Normalising assisted suicide


It happened so long ago that the exact details are dim in my mind, but I seem to remember that a nominee for the US Supreme Court nearly failed to score his dream job because of an alleged crime of attempted rape when he was a 17-year-old high school student. There was a huge controversy, wasn’t there? Demonstrations, twitterstorms, talking heads across the nation in a frenzy, politicians grandstanding...

Of course times were different way back then and public figures were held to a higher moral and legal standard. As the saying goes, "The past is a foreign country; they do things differently there." Nonetheless it is disturbing to read that the Democratic candidate for the governor of California, Gavin Newsom, casually told a journalist for The New Yorker that he assisted his mother to commit suicide in 2002. Assisting a suicide was a crime in California in 2002– and it still is if you are not a doctor. And at the time Newsom was not a callow teenager, but a member of the San Francisco Board of Supervisors.

The odd thing about this is that there has been almost no reaction. Assisting a suicide is just as much a crime as attempted rape and in this case Newsom has admitted that he did it. You would think that at least his Republican opponent would seize upon this blithe admission as a golden opportunity to knock off Newsom's Kennedy-esque halo.

But no one seems to care. What more do you need to show that assisted suicide has been normalised in California?




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Transhumanist dreams


I don’t know whether it is due to reading too much science fiction or not reading enough, but I find it impossible to take the transhumanist movement seriously. Some of its ideas about self-definition have seeped into mainstream culture, like transgenderism. However, its vision of a future in which homo sapiens has evolved into Morlocks and Eloi (as H.G. Wells foresaw in The Time Machine) seems almost preposterous, at least to me.

Perhaps to allay fears that scepticism from people like me will eventually lead to injustice against the more advanced sort of people, American transhumanists have drafted a transhumanist Bill of Rights (see below). This guarantees “sentient entities” everything from universal health care and internet coverage to “self-consciousness in perpetuity”.

One thing that I can never quite grasp about the earnest predictions of transhumanists is whether they actually care whether their schemes are practical. Uploading one’s consciousness to the internet sounds super but the obstacles in its path are more like the Himalayas than parking lot speedbumps – apart from all the ethical issues. Anyhow, good luck to them!




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Bioethics and American politics


The leading bioethics issue in American politics is, by far, abortion. But others have made an impact. The proper use of human embryonic stem cells was debated in Obama’s first campaign. Euthanasia is sure to become an issue at some stage. But, much to my surprise, consumer genetics is emerging as a sleeper issue.

Millions of Americans have used the services of direct-to-consumer genetic ancestry testing companies. Now Senator Elizabeth Warrane, aka “Pocahontas” to supporters of President Trump, has resorted to one to settle the controversial question of her Native American heritage. A report has finally demonstrated that she may have had a Native American ancestor six to ten generations ago. But it does not demonstrate that this ancestor was from the Cherokee tribe, or even from a tribe in the United States. 

Settling questions of personal identity with genetics is fraught with uncertainty. It’s an area that politicians – and everyone else -- should approach with great caution.




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The enormity of it all!


Being a good editor requires a certain personality type: someone persnickety, obsessive, hawk-eyed and meticulous. Not being that sort of person myself, I can still appreciate their virtues. A good editor fusses about capitalisation, proper usage, consistent spelling, and the Oxford comma and loses sleep over knaves who cannot distinguish between “discrete” and “discreet”.

But there is one point on which the good editor and I agree: the enormity of writing “normalcy” when one means “normality”. I recently read in a not-to-be-named journal, “As the boundaries between human and ‘the other’, technological, biological and environmental, are eroded and perceptions of normalcy are challenged...” No. No. No. No. The word is “normality”.

The virus of “normalcy” has spread like a particularly pernicious strain of influenza through the media. A quick Google search brings up: “Nikki Haley's Departure Is Shocking Because Of Its Normalcy” and “Anger Recedes as Normalcy, Good Humor Mark Kavanaugh’s First Day on Supreme Court”.

Do you know who put “normalcy” on the map, so to speak? Warren G. Harding, who succeeded Woodrow Wilson in the White House. In 1920 the slogan of his campaign was “a return to normalcy”. The word should have died with his reputation as the worst of American presidents.

Sorry, I just had to get that off my chest. And please don’t get me started on the misuse of “enormity” for “enormousness”.




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Which is more egregious: euthanasia or plagiarism?


About five minutes before I was about to entrust this newsletter to MailChimp, I heard that the Canadian Medical Association had just withdrawn from the World Medical Association after the WMA's annual meeting in Reykjavík.

The CMA said that the trigger for this dramatic turn of events was the highly unethical behaviour of the incoming president of the WMA, Dr Leonid Eidelman. It accused Dr Eidelman of plagiarism. This was true and not very smart. A few sentences in Dr Eidelman’s inaugural address to the assembly had been lifted from the inaugural address of a former president of the CMA, Dr Chris Simpson. Since Dr Simpson was one of the CMA’s delegates in Reykjavík, it was highly unlikely that this would go unnoticed. Apparently other passages had also been copied from “various websites, blogs and news articles, without appropriate attribution to the authors”.

"As an organization that holds itself as the arbiter of medical ethics at the global level, the WMA has failed to uphold its own standards,” said Dr Gigi Osler, the current CMA president. “The CMA cannot, in all good conscience, continue to be a member of such an organization.”

The WMA Council and the Assembly accepted an apology from Dr Eidelman. He said that he had relied upon speechwriters – a plausible excuse, as he is a Latvian who emigrated to Israel and who speaks English with a heavy accent.  

This is not the first time that a WMA president has been accused of moral failings. The immediate past president, Dr Ketan Desai, was elected while facing criminal charges for corruption in India. At the time, medical ethicist Art Caplan urged the WMA to ditch him as morally compromised. It didn’t.

So the Canadians’ reaction seems disproportionate. It is more likely that it was prompted by the WMA’s firm opposition to euthanasia, which the CMA vigorously supports. One of the CMA delegates, Dr Jeff Blackmer, posted a bitter tweet about the irony that an unethical plagiarist had once openly criticised him for being unethical in backing euthanasia.

No doubt euthanasia will continue to split the medical profession. Any comments from readers?




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A dreadful weekend


It has been a dreadful weekend. On Saturday Collingwood lost the AFL Grand Final to the West Coast Eagles – in the last five minutes. It has taken me a while to get over this. On the brighter side, today the Roosters beat Melbourne Storm convincingly, 21-6, in the Rugby League Grand Final in Sydney. I just thought that our international readers might like to keep in touch with the world’s greatest sports.

These contests are a testimony to the strength and fitness of the athletes. It’s incredible that they can even walk after being buried beneath a mound of other bodies and sustaining a few quiet kicks to the ribs. But they rise, shake themselves and start sprinting around the paddock, begging for more punishment.

In an interesting analysis of American football below (the kind in which they wear helmets and shoulder pads and take four hours to complete a 60-minute game), two kinesiologists ask whether the sport should be considered unethical in the light of the significant injuries sustained by many players.

It’s a problem with all sports, including rugby league and AFL. Basketballers have terrible ankles; rugby union players have become quadriplegics; cricketers have died. They conclude: “Considering all the morally problematic aspects surrounding football, it is worth asking: Is this the kind of social practice around which Americans should imagine and build their national identity?”

What do you think? Should the threat of severe injury be enough to ban a sport? What level of harm is acceptable?

As for myself, I’m playing it safe. I’m sticking with my preferred sport, full-contact origami.  




MORE ON THESE TOPICS | sports ethics
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Help needed!


We have a very varied selection of articles this week, ranging from arguments for child euthanasia in Canada, digital smart pills and child transgender affirmation. We are always looking for comments, criticism, and leads. Please do your part, readers!




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Canada laying groundwork for child euthanasia


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About ‘top jobs’


Last year Sydney journalist Miranda Devine interviewed Australia’s first out-of-the-closet transsexual, Carlotta, a cabaret performer and TV actor. Carlotta had what is now called “gender-affirming” surgery in the early 1970s and built a career in show biz. Her advice to teenagers who want to transition to the opposite sex: “Don’t give the child hormones. Wait till 18. You shouldn’t fool around with the body until you’re mature.”

This seems common sense. However, as an article in JAMA Pediatrics (see below) reports, girls as young as 13 are receiving mastectomies to treat their gender dysphoria. Two years later (ie, when they’re 15) the transteens are supposedly as happy as Larry with their “top job”.

This doesn’t seem common sense. How can a girl of 13 give truly informed consent to a life-changing operation which removes both of her breasts? As a growing number of “detransitioners” bear witness, this is crazy. “I’m a real-live 22-year-old woman with a scarred chest and a broken voice and a 5 o’clock shadow because I couldn’t face the idea of growing up to be a woman,” says Carla in a YouTube video.

The risk of turning a young girl’s life into a misery is just too great to allow teen mastectomies before adulthood. In fact, it’s hard to describe it as anything other than child abuse by her physicians and psychologists. What do you think?




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The limits of ‘procreative liberty’


John Robertson was an American scholar in law and bioethics who died last year. He is best known for making a strong case for “procreative liberty”, whether procreation takes place naturally or with the help of technology. As a tribute to his influence, the current issue of the Journal of Law and the Biosciences contains several articles about this theory.  

Robertson’s theme was that reproductive choices which do not harm the interests of others should not be subject to regulation or prohibition. In his best-known book, Children of Choice, published in 1996, he discussed abortion, IVF, surrogacy and pre-natal genetic modification. But time has moved on. The principle of effectively unconstrained “procreative liberty” is being used to justify other developments, some of which are discussed in the Journal, including unisex gestation.  

What I found interesting was that Robertson, in a paper written not long before his death, agreed that a male pregnancy (after a womb transplant) could be ethically justified, but only if it were necessary for genetic reproduction. Even he wanted to draw a line somewhere.

However, the author of one of tribute essays questions this restriction. Enjoying the experience of gestation is reason enough, she says. (See below). I suppose that this raises the question of whether it is possible to draw any lines, anywhere, once we agree that reproductive rights should not be limited.




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Moral fluoridation


Why do I keep screwing things up? This is, IMHO, the first question of moral philosophy. I know what the decent, sensible and right option is, and yet I choose the nasty, mad and wrong option. Bad ideas, said Plato. Bad education, said Rousseau. Desire, said Buddha. Capitalism, said Marx. Nature red in tooth and claw, said Darwin. Myself, I’m partial to the notion of Original Sin, which, as G.K. Chesterton observed, is the only Christian doctrine which can be proved by reading the newspaper.

The second question is how do I stop screwing things up? Theoretically, this can be solved without answering the first question. A number of bioethicists believe that we could live the good life if we spiked the water supply with a kind of morality fluoride. This sounds a bit too much like living as a Delta in Brave New World for my taste, but their concern is preventing very bad hombres from destroying the world. Perhaps the loss of a wide range of human emotions would be worth it.

However, there are other considerations – should we force people to drink the water? Should we tell them that their water has been spiked? All interesting questions – read all about in this week’s newsletter below.




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Remembering the Unabomber


The Norwegian bioethicist Ole Martin Moen has published an unusual but intriguing article in the journal Bioethics. He analyses the arguments in the half-mad manifesto of the Unabomber, Ted Kaczynski. For those whose memories don’t stretch back that far, Kaczynski was a brilliant mathematician who became obsessed with the decay of American society. He retired to a backwoods cabin and worked as a serial postal bomber whose handiwork killed three people and maimed 23 between 1978 and 1995. The New York Times published his 35,000-word manifesto in 1995 which eventually led to his capture.

Moen says that Kaczynski’s concerns should be taken seriously and refuted philosophically, even if he is a terrorist. “Although philosophers can only play a modest role in fighting terrorism, it is striking that, today, the most obvious line of response to one’s adversaries—to listen carefully, to show that one has understood their position, and to explain why one believes they are mistaken—is hardly even attempted as a means to discourage terrorists.”

His words can usefully be applied to many other areas of public discourse today, not just dialogues with ideologically-motivated terrorists. It’s very seldom that opposing sides listen carefully to each other. In the Middle Ages, academic battles took the form of “disputation and debate”. Stating the other side’s argument in the strongest possible form was an essential part of the process – before demolishing it, of course. We need a bit more of this fairness, even for madmen like Kaczynski.




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The dangers of selfies


It’s not an original thought, but with every amazing technological advance comes an unheard-of and very dangerous drawback. Smashing the atom gave us nuclear power and the atom bomb. The automobile gave us hitherto unimaginable mobility and tens of thousands of deaths on the road. The Pill gave women control over their fertility and led to birth rates so low that some countries are in danger of disappearing.

And the mobile phone? Where do we start? This week, with selfies. They give Millennials a buzz, but according to cosmetic surgeons, they also can lead to a psychological disorder which has been dubbed “Snapchat Dysmorphia”. Young women (mostly) are so used to altering their images with apps that they demand the same service from cosmetic surgeons.

“This is an alarming trend because those filtered selfies often present an unattainable look and are blurring the line of reality and fantasy for these patients,” report the authors of an article in JAMA Facial Plastic Surgery.

It would take a sharper mind than mine to define the problem, but our relationship with technology is problematic. We don’t foresee the problems and we can’t control our dependence. Since so much of contemporary bioethics revolves around the proper use of technology, this is something we always have to bear in mind.




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Animal euthanasia


Every year, about 1.5 million cases of euthanasia take place in the United States. Does this have a negative impact on healthcare workers? Sorry, about 1.5 million cases of cat and dog euthanasia take place. But the question is still relevant. Veterinarians, veterinary assistants and shelter workers experience great stress at having to put animals down.

The emotional connection between the work of human doctors and animal doctors is closer than you might think. Owners often react to a pet’s death with the intensity of grief which appears equivalent to the loss of a beloved relative.

So the moral stress which vets experience is relevant. Suicide amongst vets has been the topic of several studies. “Veterinarians are four times more likely than members of the general population and two times more likely than other health professionals to die by suicide,” according to a 2012 study in the journal of The American Association of Suicidology, Suicide and Life-Threatening Behaviour.   

Why? Performing euthanasia day in, day out, also appears to make some vets less able to resist the temptation to commit suicide. The authors of the 2012 study found that “... all else being equal, veterinarians may be more likely than members of other professions to enact a lethal attempt when they desire suicide because their exposure to euthanasia has rendered them less fearful of death."   

Aren’t there lessons in these finding which are relevant to doctors who euthanize their patients? Sometimes doctors in Belgium or the Netherlands are quoted as saying that the death they helped was beautiful or peaceful. Could that be bravado masking their own nonchalance about human death?

How many times have we all heard the argument, “You wouldn’t let a dog suffer like this...” Its logic is that if the suffering of animals and humans is essentially the same, they both should be released from suffering in the same way. But if the animal-human parallel works for the patient, why not for the doctor? If we allow euthanasia, surely we can expect the same burn-out rates and the same suicide rates as veterinarians ... at least the same. That should scare us all – especially the doctors who will be responsible.




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The Sea and Poison


Today, I'll take a break from controversy. Let's talk about literature. 

In 2003 the President’s Council on Bioethics published an anthology about bioethical dilemmas. It was a surprising contribution by a government committee. Such bodies are better known for generating reports which are dismal, dull, dreary and destined for pulping.

The selections in the anthology ranged from J.M. Barrie’s Peter Pan to Plutarch. Not only were they thought-provoking, but also enjoyable. At the time I thought it was the last word in the literature of bioethics, but since then I have discovered other texts.

One of these, which I highly recommend, is the Japanese novel The Sea and Poison, by Shusaku Endo, who, like Graham Greene, was a perpetual also-ran for the Nobel Prize. Endo is better known in the West as the author of Silence, which Martin Scorsese recently made into a film.

Silence was a 1966 historical novel about the apostasy of a Catholic priest in 17th Century Japan. The Sea and Poison, an earlier work published in 1958, is also about tormented consciences. It is based on an incident which happened shortly before the end of World War II, when Japanese doctors vivisected several American POWs. The focus of the story is not the gory procedure, which is described very briefly at the end of the novel, but the inner lives of the doctors and nurses. How could they have allowed themselves to participate in something which was so clearly evil? It’s extraordinarily insightful – and very relevant at a time when we are debating conscientious objection.

The Sea and Poison is out of print in English, but can easily be obtained second-hand on the internet. It’s well worthwhile for anyone teaching bioethics.  




MORE ON THESE TOPICS | conscientious objection, literature
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Two cheers, at least, for utilitarianism


We tend to give utilitarianism a hard time in “Pointed Remarks”. But sometimes we could do with a bit more utilitarianism. It might keep the media – and many doctors, too – from being so dewy-eyed about apparent successes. Take IVF, which celebrated, so to speak, its 40th anniversary this week, with the birthday of Louise Brown.

In some respects, IVF has been quite a success. An estimated 8 million IVF children have been born since then. A thriving industry has grown up, worth some US$15 billion, making lots of doctors, scientists, technicians and administrators very wealthy. That is the happiness side of the ledger.

But how about the women who endured cycle after cycle of IVF without conceiving? Their lives have been filled with suffering as a result. And there are far more of them than women who eventually conceived. How about the destruction of millions upon millions of human embryos? And how about the disturbing future of IVF – designer babies and genetically-engineered children? That is the pain side of the ledger. It hasn’t been quantified, of course, but it must be acknowledged. I would venture to say that the balance is negative.

Whether I’m right or wrong about that, I do think that we need a clearer vision of the negative side of assisted reproductive technology.




MORE ON THESE TOPICS | ivf
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Selling bioethics


We’re back! Holidays are over and BioEdge has resumed publication. Now, while we’re still fresh and enthusiastic, is the time for our readers to make suggestions for improving our coverage.

This week the lead story focuses on a report from the Nuffield Council on Bioethics in Britain which has given an in-principle endorsement to germline modification. While the report is purely advisory, most of its recommendations on similar topics have eventually become law in the UK. For this reason, its advice to the British government is bound to have a world-wide impact.

Most people, including members of Parliament, will only read newspaper articles about this radical development in genetics. But it is fundamentally a philosophical, not a scientific question: what makes us human?

The Nuffield report fails to answer this, but the full report is scathingly critical of what it calls “genomic essentialism”: we are not our genes. Instead, as I read it, it has framed the question as a consumer rights issue: provided that the technology is safe, don’t couples have a right to have the kind of children they want?

What do you think?




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Nabbing the “Golden State Killer”


The Economist recently highlighted growing concern about “the surveillance state”. It argued that “the digital world, like the real one, [should have] places where law-abiding people can enjoy privacy. Citizens of liberal democracies do not expect to be frisked without good cause, or have their homes searched without a warrant.”

And it concluded, “Police rightly watch citizens to keep them safe. Citizens must watch the police to remain free.”

This is useful advice for anyone sending DNA to a genealogy website. Our lead story below is an example of how easily police vigilance, open source data, and personal privacy become scrambled. Earlier this year California police used the DNA of a vicious serial killer who had been off the radar for more than 30 years and identified him through a popular website.

I can imagine that some users must have been outraged. This could happen to me: what gives police the right to trawl through my relatives? Perhaps we should follow the advice of The Economist and require warrants for searching family trees on the internet.   

On another note, you probably know that we're coming to the end of our fund-raising drive. Please think about a donation -- BioEdge has no sugar daddy, no big institution, behind it. We depend on the generosity of our readers for survival. 




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Suicide rate soars in US


The deaths this week of fashion designer Kate Spade and celebrity chef Anthony Bourdain (see below) focused the media once again on explanations for America’s rising suicide rates. The short answer is: nobody knows. The more nuanced long answer is: nobody knows for sure. But something is driving it. Here are a few paragraphs from the New York Times which suggest that suicide is becoming culturally more acceptable:

The rise of suicide turns a dark mirror on modern American society: its racing, fractured culture; its flimsy mental health system; and the desperation of so many individual souls, hidden behind the waves of smiling social media photos and cute emoticons.

Some experts fear that suicide is simply becoming more acceptable. “It’s a hard idea to test, but it’s possible that a cultural script may be developing among some segments of our population,” said Julie Phillips, a sociologist at Rutgers.

Prohibitions are apparently loosening in some quarters, she said. Particularly among younger people, Dr. Phillips said, “We are seeing somewhat more tolerant attitudes toward suicide.”

In surveys, younger respondents are more likely than older ones “to believe we have the right to die under certain circumstances, like incurable disease, bankruptcy, or being tired of living,” she said.

If this is the case, why, O why, is there a movement for assisted suicide? Yes, it’s hard to prove, but it makes sense: if assisted suicide is a triumph of compassion and autonomy, how can unassisted suicide possibly be a tragedy?




MORE ON THESE TOPICS | assisted suicide, suicide
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Left out on euthanasia


Some years ago, I received an unexpected phone call from a Melbourne magazine which described itself as the voice of the Australian Left. One of the editors wanted me to write an article about euthanasia activist Philip Nitschke. “He’s ****ing the proletariat over, comrade,” was his interpretation of Dr Nitschke’s mission. I obliged and was later rewarded with an invitation to the magazine’s Christmas party. I had an interesting chat there with an enthusiastic fan of Stalin’s philosophical works (“much misunderstood”), thus dispelling any misgivings I might have had about the magazine’s left-wing credentials.

Nowadays, “left-wing” almost certainly indicates support for euthanasia. That’s why I was gratified to read that the defeat of a euthanasia bill in Portugal last week was due to the opposition of the Communist Party. Its leader, João Oliveira, told the Portuguese parliament that:

“Faced with the problems of human suffering, illness, disability or incapacity, the solution is not to remove responsibility from society by promoting the early death of people in these circumstances, but to promote social progress in order to ensure conditions for a decent life.” 

That’s what I thought left-wing politics was all about: protecting the disadvantaged. Have left-wingers in the Anglosphere lost their way?




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Ireland chooses


Ireland, which was once Europe’s most socially conservative nation, has voted to repeal the Eighth Amendment to its constitution in order to permit abortion. The vote was roughly 2 to 1 in favour of change, with nearly the whole country supporting it. Taoiseach (prime minister) Leo Varadkar reassured No voters. “Ireland will still be the same country today as it was before, just a little more tolerant, open and respectful.” 

The legalisation of abortion comes hard on the heels of the legalisation of same-sex marriage in 2015. Together they suggest that Ireland is not the same country, at least not compared to 1983, when the Eighth Amendment was passed by a 2 to 1 margin. It is obvious that the country has “changed, changed utterly” in a single generation – although people will differ on whether this signals a “terrible beauty” or a terrible shame.

What is responsible for the turnabout? The decline in the prestige and power of the Catholic Church, which once was synonymous with Irish culture, surely has something to do with it. But there must be other reasons as well, as Ireland is simply treading the well-worn path towards secularisation which has swept across Western Europe. It’s worthwhile trying to understand the dynamics of the change, as the rise of bioethics itself is part of that secularisation. Otherwise we – Ireland and the rest of us – will fail to understand ourselves.

One example of the narrative which is being used to explain the referendum result is the image of Savita Halappanavar, an Indian migrant who died after asking for an abortion in 2012. It was used to show what happens to women who are denied their reproductive rights. However, abortion had nothing to do with her tragic death, a government investigation concluded in 2014. Instead, it was a perfect storm of medical negligence.

“We have voted to look reality in the eye and we did not blink," says Mr Varadkar about the referendum result. If he meant by these self-congratulatory words that Ireland is no longer living in a world of delusion and lies, he has obviously spoken too soon.




MORE ON THESE TOPICS | abortion, ireland
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May prisoners be used in clinical research?


Shusaku Endo may be the greatest Japanese novelist who didn’t win the Nobel Prize. He is best known in the West for his novel Silence, about Christianity in 17th Century Japan, which was recently made into a film by Martin Scorsese. But one of his early novels touches upon the ethics of clinical research. Based upon a historical incident which took place just weeks before the end of World War II, The Sea and Poison relates the moral corruption of doctors who vivisected several American prisoners of war.

It’s hard to get, but well worth reading, as it exemplifies the hazards of research on prisoners. Almost no population is more vulnerable to exploitation by clinical researchers than prisoners. Even if they benefit from the research in some tangential way, a more powerful motivation may be their desire to please prison authorities.

Many bioethicists have written about this difficult ethical issue, but this doesn’t make it any easier to make a decision in practice. Below is an article about proposed clinical trial conducted in prisons to determine whether low-salt diets are healthier. What do you think?




MORE ON THESE TOPICS | prison ethics
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AMA spurns assisted suicide


“Death with dignity” or “aid in dying” is gathering pace in the United States, now that Hawaii has joined the list of states which permit it. Some of the most important input in the debate comes from medical associations. The American 
Academy of Hospice and Palliative Medicine 
has adopted a position of “studied neutrality”. But how does the American Medical Association stand?

According to a recent decision by its Council on Ethical and Judicial Affairs, squarely against it. Below we report that in a little-noticed report, it endorses many of the arguments raised against assisted suicide: "dying with dignity" is a misnomer; it is probably not safe; and it could lead to a slippery slope. It's a very interesting read -- along with all of our other articles. Check them out. 




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Thanos inherits the mantle of Paul Ehrlich


Personally, I'm not a big fan of super-hero films. I get a bit tired of the wisecracks and the fake explosions and crumbling buildings. But that's me, I'm afraid. Age. Generational change. Fuddy-duddy etc. 

However, they are interesting thermometers of the culture. Black Panther certainly taps into a revolt against racism. Guardians of the Galaxy revolves around lost fatherhood. And the really, really bad guy in the latest epic, Avengers: Infinity War, is obsessed with population control. He has a plan for eliminating half the population of the earth. It's a reprise of Paul Ehrlich's 1968 damp squib, The Population Bomb, which predicted social collapse and environmental disaster unless the brakes were put on world population. It was a very scary script and it never happened, like most disaster movies. 

What I wonder is this: does this mean that over-population still scares people or that it no longer does? Thanos, after all, is a villain, and the Avengers are out to defend the world, not support his extreme environmentalist creed. My feeling is that very few people are fretting about over-population as such, although the real problem, a shrinking and greying population, isn't attracting much interest either. Any thoughts?




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Dodgy death statistics in Flanders


“Die, my dear Doctor! That's the last thing I shall do,” said the 19th Century British foreign secretary Viscount Palmerston, not long before he slipped his cable. For all of us, dying is the last and perhaps most significant moment of life. Which is why recording the exact cause of death is a matter that calls for scrupulous accuracy – not just for epidemiological purposes, but also as part of our personal and social history.

But our disturbing lead story today – that Flemish doctors under-report euthanasia by a mind-boggling 550% -- throws all this to the winds. The most common practice, at least according to the latest research into the topic, is that most Flemish physicians who practice euthanasia lie on the death certificate.

Perhaps their offence is more understandable than jurisdictions which require doctors to lie. In many, like Oregon, they are told to record the patient’s underlying disease as the cause of death – as if JFK died of Addison’s disease rather than an assassin’s bullet.

Perhaps we should keep in mind the wise words of the author of a study on death certificates: “Death certificates are really important. We owe it to our patients to be able to accurately record why they die” — and thus to “help the living.”




MORE ON THESE TOPICS | belgium, euthanasia, flanders
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A more inclusive view of personhood


“Personhood” is a concept that is of great relevance to a range of bioethics debates. These include embryo research, abortion, the withdrawal and withholding of treatment, and euthanasia. Ironically, conservative bioethicists argue for a liberal definition of personhood, while liberal bioethicists tend to defend a more restrictive account of who classifies as a person. The former suggest that personhood pertains to a radical capacity for conscious activity, and all human beings, regardless of whether they have actualised this capacity or not, are persons.

The latter argue that the unborn and the radically incapacitated do not have a capacity for conscious self-awareness, and do not count as persons.

Yet the way in which we define personhood has a relevance that goes beyond debates about human beings. It also has significant bearing on debates about animal rights.

Some bioethicists argue that certain non-human animals, such as chimpanzees, should be recognised as “persons”. NYU animal studies professor Jeff Sebo, for example, says that chimps have many of the traits – self-recognition, use of language, friendships and the pursuit of goals – that we take to be constitutive of personhood. As such, we should include them in our definition of personhood. Sebo has championed a protracted legal campaign in New York State to have two chimpanzees, Kiko and Tommy, recognised as persons.

Here’s what Sebo had to say in a recent New York Times op-ed:

Sometimes when we are overwhelmed by the complexity of an issue, it can help to start by stating a simple truth and going from there. In this case, the simple truth is that Kiko and Tommy are not mere things. Whatever else we say about the nature and limits of moral and legal personhood, we should be willing to say at least that. The only alternative is to continue to accept an arbitrary and exclusionary view about what it takes to merit moral and legal recognition. Kiko and Tommy deserve better than that, and so do the rest of us.

I wonder if these two different debates – the limits of human personhood and the scope of animal personhood – have implications for each other. Perhaps those who defend the rights of the unborn and severely incapacitated humans must also acknowledge the need to afford greater legal recognition to intelligent non-human animals. And perhaps those who advocate for a definition of personhood that includes intelligent animals should also include those at the margins of human life.

XAVIER SYMONS  
Deputy Editor




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Disability and euthanasia


Mahatma Ghandi reputedly said, “A nation’s greatness is measured by how it treats its weakest members.” We could paraphrase this in a contemporary context: a nation’s right-to-die laws are measured by how it treats the disabled.

Our lead story this week deals with the euthanasia of patients with an intellectual disability or autism in the Netherlands. Four bioethicists suggest that the necessary safeguards are lacking in these cases.

That is bad enough. But they go on to point out that the disabled have to deal with nigh-intolerable suffering for their whole lives. How does legal euthanasia make them feel? In the words of another author, “If society endorses the right of a person to seek physician assistance to end his or her life because of increasing loss of functional autonomy, what does that say about how our society values the lives of people who live with comparable limitations every day of their lives for years on end?”




MORE ON THESE TOPICS | disability, euthanasia
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Hawaii legalises assisted suicide


Hawaii legalised assisted suicide this week. It becomes the seventh American jurisdiction to do so. Since 1997, the legislatures of Hawaii, Oregon, Washington state, California, Colorado, Vermont and the District of Columbia have passed laws permitting assisted suicide. In Montana, a court decision found that it was legal, but there has been no legislation. 

The new law follows the controversial Oregon model. One of the drawbacks of this legislation is its definition of "terminal illness". It is usually understood to be a condition which will lead to death withinn six months or a year. But if a patient decides to spurn all treatment, treatment which could keep them alive for years, his or her illness will automatically become "terminal". This is a flimsy basis for such an important law. 




MORE ON THESE TOPICS | assisted suicide, hawaii
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Driverless ethics


The tragic death of a Florida woman struck by a driverless Uber has revived public interest in robot ethics. How do these cars make decisions in life and death situations? Are they transparent enough about the standards?

Such questions will be asked more and more as the age of autonomous vehicles approaches. Perhaps you could program it yourself. Highly Ethical Cars would take almost no risks and take two hours to get to work. Minimally Ethical Cars would run red lights and get there in five minutes. It’s going to be an interesting debate.




MORE ON THESE TOPICS | driverless cars
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A beautiful death


A recent US documentary recounts the story of an Oregon couple who committed suicide together in April 2017. The couple, Charlie and Francie Emerick, had both been diagnosed with terminal illnesses. They felt that, after having been married and together for some sixty odd years, it was only fitting that they exit this world as a couple.

Talk of “fittingness” in the context of death draws our attention to a broader topic, namely, the aesthetics of death. Just as we seek beauty in life, so also do we seek beauty in death.

There is a certain beauty to ending the narrative arc of our lives with a “fitting” poetic flourish. And in the context of euthanasia, it seems that many cases are underpinned by a desire not just for a peaceful death, but a beautiful death.

In 2016, a 41-year-old Californian multi-media and performance artist, Betsy Davis, ended her life with lethal medication. Davis wanted her suicide to be a “final act” in her artistic career, and she organised an elaborate weekend of celebrations and performances before consuming the lethal dose on a canopy bed by a hillside.

I wonder if, in seeking a beautiful death, we should look the wisdom the ages, rather than following our own artistic intuitions. The 15th century Latin tract Ars Moriendi provides persons in extremis with guidance for a good death. It encourages readers to face death bravely, to avoid temptations to despair, impatience or pride, and to surround oneself with those loved ones who, in life, have brought joy to one’s soul.

I’m not sure that the authors of the text had assisted suicide in mind when they outlined the elements of the ars moriendi

XAVIER SYMONS
Deputy Editor
 




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Remembering Proposition 71


In 2004, Californian voters overwhelmingly approved Proposition 71, a ballot initiative which created the US$3 billion California Institute for Regenerative Medicine. This was the apogee of stem cell fundamentalism around the world. Stem cells, especially human embryonic stem cells, were the key to unlock the secrets of human biology. They would lead to cures to dread diseases, perhaps not tomorrow, but the day after tomorrow.

Hollywood stars enthusiastically backed the ballot initiative. Quadriplegic Christopher Reeves told voters in an advertisement, "Stem cells have already cured paralysis in animals. Stem cells are the future of medicine." Parkinson’s victim Michael J. Fox said: "Vote yes on 71, and save the life of someone you love."

Fourteen years on, the CIRM (aka California taxpayers) has received its first royalties – a cheque for US$190,345.87 – a 0.00006% return on investment.  And that’s not for a cure, by the way. It’s for a drug which has only passed a Phase I clinical trial. Clearly, California voters were sold a pup. Is it time for the state to set up a stem cell truth and reconciliation commission? Read the story below. 




MORE ON THESE TOPICS | california institute for regenerative medicine, cirm, stem cells
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Thailand needs bioethics


BioEdge is a bioethical gadfly, nipping and biting at what we perceive to be bad arguments and unhealthy developments. But the recent story about a Japanese man who fathered 13 children with the help of mothers hired in Thailand suggests that almost any bioethical approach is better than none – and “none” was the position of the Bangkok judge who awarded him custody.

"The petitioner is an heir and president of a well-known company listed in a stock exchange in Japan, owner and shareholder in many companies ... which shows the petitioner has professional stability and an ample income to raise all the children. Therefore, it is ruled that all the 13 children are legal children of the petitioner … and the petitioner is their sole guardian."

Any bioethicist would immediately comment that this decision ignores many important issues. Are children just property? What about the rights of the surrogate mothers? Is it right to raise 13 boys without mothers? Is it right to raise 13 boys together like cattle? Is wealth a substitute for parenting? Is fatherhood simply a matter of sperm donation?

It sounds as though the judge merely wanted to hand the boys over to Japan. In his words (as reported) I can detect no inkling of the fact that the issue is more complicated than a commercial property transaction. It sounds as though Thailand urgently needs bioethics education.




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At least one reason why Belgium is not boring


Last year the London Telegraph ran a travel article about Belgium, “10 reasons why Belgium is not as boring as you think”. A bit patronising, right?

Personally, I’d never call a country which has dared to legalise euthanasia boring. Anything but. This is a defiant poke in the eye to hundreds of years of Western civilisation. Whether you agree with Belgium’s regime of legalised euthanasia or not, it is a wildly exciting experiment in disrupting established social norms.

The latest news is that a whistleblower has accused the country’s euthanasia commission of breaking the law, muzzling dissent, and packing the commission with euthanasia practitioners. In other countries this would be called corruption. The whistleblower's letter to the Belgian Parliament is a searing indictment of a respected institution. You would think that the Belgian media would be baying for blood.

Nope. It was an American news agency, Associated Press, which broke the story. As far as I can see, it has been reported around the world, but not in Belgium. It’s a funny kind of journalism which ignores such a big story.  Perhaps the media there believes that Belgium really is as boring as you think. Or perhaps they are in the pocket of the euthanasia lobby. 




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Apologies


Sorry, readers -- this week's BioEdge is a bit abbreviated. 




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Conscientious objection twisting in the wind in Canada


For years bioethicists of a utilitarian cast have argued that conscientious objection has no place in medicine. Now Canadian courts are beginning to put their stamp of approval on the extinction of doctors’ right to refuse to kill their patients.

The Superior Court of Justice Division Court of Ontario ruled this week that if doctors are unwilling to perform legal actions, they should find another job (see report in BioEdge).

The case is sure to be appealed, but if the doctors championing conscientious objection fail, the consequences will be dire. Throughout Canada, doctors would be required to refer for euthanasia. If they refuse, they will be hounded out of their profession, or, at best, shunted into specialties where the question will not arise, like pathology or dermatology.   

This ruling shows how quickly tolerance vanishes after euthanasia has been legalised. In the Carter decision which legalised it, Canada’s Supreme Court explicitly stated that legalizing euthanasia did not entail a duty on the part of physicians to provide it. Now, however, 18 months and more than a thousand death after legalisation, conscientious objection is at risk.  

It also shows how vulnerable religious-based arguments can be. The plaintiffs contended that referring patients violated their right to religious freedom. While this is true, is this the main ground for conscientious objection? As several doctors pointed out in the Canadian Medical Association Journal last year, “Insofar as all refusals of therapy are ultimately justified by the ethical belief that the goal of therapy is to provide benefit and avoid harm, all treatment refusals are matters of conscience.”




MORE ON THESE TOPICS | conscientious objection, euthanasia for psychological suffering
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First monkeys cloned in China


This week’s announcement by Chinese scientists that they had cloned macaque monkeys prompted a walk down memory lane for me. The scientists aver that they have no interest whatsoever in human cloning. One must take them at their word, I suppose, but the impulse to clone humans is a recurring lunacy.

Remember the Raelians? In 2002 Rael, the French-Canadian founder of the sect which believes that mankind was created by extraterrestrials and that cloning is a way to immortality, announced that his scientists had cloned a baby.

Remember Severino Antinori? The Italian gynaecologist announced that he had cloned babies in 2002. No proof was ever given. He is currently battling charges of kidnapping and forcibly removing eight eggs from a Spanish nurse.

Remember Hwang Woo-suk? The veterinary scientist claimed that he had cloned human embryos in 2004 and was featured on a South Korean stamp. Much of his work was fraudulent.

Remember Panayiotis Zavos? The Cypriot-American claimed in 2009 that he had implanted cloned 14 embryos and implanted them in four women. He has faded from the limelight in recent years.

I would wager that if the Chinese experiment is confirmed, there will be another wave of cloning attempts by rogue scientists. Watch this space.




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Singapore and gay parents. France debates bioethics. Dutch euthanasia dissent.


So much has been done; more, far more, will I achieve; treading in the steps already marked, I will pioneer a new way, explore unknown powers, and unfold to the world the deepest mysteries of creation.

Recognise these words? They are spoken by the pioneering scientist Victor Frankenstein in Mary Shelley’s rich and intriguing novel. This year marks the 200th anniversary of its publication in 1818 and it is being celebrated with a number of academic conferences.

In the era of CRISPR, artificial intelligence, and reproductive technology, it’s a good idea to revisit the novel. Despite its Gothic excesses, Frankenstein; or, The Modern Prometheus, is still an insightful critique of science and scientists. Make this your New Year’s resolution: “I will reread Frankenstein”.




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Back on deck


Hi there! We're back after a long and refreshing break -- in the mood to take suggestions for improving our coverage and improving our quality. If you have any great ideas, please send them along to michael@bioedge.org or xavier.symons@bioedge.org

Cheers!




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Happy Christmas! Happy New Year!


There will be no BioEdge newsletters over Christmas and New Year. However, we'll be working on ways to improve our coverage and presentation. Feel free to correspond and share your insights. 

All the best for the Christmas season to you and your loved ones. 




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Bioethics and ‘inappropriate behaviour’


There has been so much “inappropriate behaviour” in the press over the past two months, ever since movie mogul Harvey Weinstein was exposed as a serial molester of women, that it deserves its own acronym, IB. IB is a euphemism for a range of appalling actions, like sexual harassment, sexual assault, and rape.

And now, thanks to an Arizona Congressman we can add surrogacy to the IB list. Trent Franks resigned this week after revelations that he had pressured women on his staff to act as a surrogate mother. It’s not a pretty story, but it helps to expose the exploitative potential of surrogacy, which is so often depicted as generous and life-affirming.

Heads up: the next issue of BioEdge will be the last until January. Hey! Everyone deserves a holiday, even the staff of BioEdge. 




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‘Do not resuscitate’ tattoos. Rohingya and population control


Unlike issues such as euthanasia or stem cell research, the bioethics of tattoos is not highly developed. However, it presents its own challenges and complexities. What if a patient shows up in emergency with "do not resuscitate" tatooed across his chest? Is that a valid advance end-of-life directive? There are so many issues here. How do the doctors know if he (let's assume it's a "he") still wants a DNR? Did he get it when he was drunk? Was it voluntary? There are so many fascinating issues -- read our preliminary report below. 

On a completely different note, with Christmas drawing near, I’m making an incredibly self-interested suggestion. Why not put a copy of my recent book, The Great Human Dignity Heist: how bioethicists are trashing the foundations of Western Civilization, in someone’s stocking? It’s available through the Australian publisher, at Amazon and at Book Depository. I can’t think of a better gift! 




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Braggadocio


Good scientists have to be curious, tenacious, creative, intuitive and analytical. And it helps if they are humble, as well. At least that is my impression after reading about the Italian neurosurgeon Sergio Canavero (see below.)

Canavero is the latest figure in a long queue of talented scientists led astray just in the last couple of years by the glamour of celebrity. Dr Canavero would no doubt deny this, but the scientific community is very sceptical of his project to transplant living heads onto living bodies. And although he has not had a single success in this project, he is already dreaming of transplanting brains.

Celebrity and science can make a toxic mix. There is thoracic surgeon Paolo Macchiarini, another Italian, whose work on artificial tracheas was hyped as life-saving, but turned out to be fraudulent.

Dutch social psychologist Diederik Stapel was renowned for his controversial research. He had faked the results of his experiments and even his PhD. Michael LaCour made headlines for his surveys about changing minds about gay marriage. He never carried out the surveys.

Japanese stem cell scientist Haruko Obokata found an incredibly simple method for creating pluripotent stem cells. And in fact, it was incredible.

What makes extremely talented and creative researchers choose the path of a circus performer rather than a dedicated scholar? Everyone has a different story, but perhaps the ancient Anglo-French word vaynglorie (vainglory) expresses it best. Are there classes for post-graduate students in humility? Perhaps there ought to be. 




MORE ON THESE TOPICS | humility, scientific fraud
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Assyrian pre-nups


Several of our stories this week deal with end-of-life issues. For a bit of a change, how about an historical diversion?

“And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.” You might recognise this quote from the Bible. It is often used to illustrate the pain of infertility, which hurts no less 4,000 years later.  

Jacob was a wandering pastoralist. But Turkish archaeologists announced this month that they had uncovered evidence of urban infertility in Kültepe, an Assyrian site in the centre of modern Turkey. It is a clay tablet with cuneiform script with a prenuptial agreement – also 4,000 years old. It may be the first pre-nup in recorded history.

If, after two years, the bride has still not borne a child, the tablet says, the wife will allow her husband to use a female slave as a surrogate mother to produce an heir. The slave would be freed after giving birth to a son.

Many ethical issues in the Reproductive Revolution have precedents, but it’s amazing to see that today’s surrogate mothers were anticipated by Assyrian slave girls four millennia ago. 




MORE ON THESE TOPICS | surrogacy, surrogacy law
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The bioethics of social media


Autonomy being the central theme of contemporary bioethics, shouldn't bioethicists be concerned about the growing presence of social media, especially Facebook, in our lives? As we report below, what Facebook (and other social media) want is to "consume as much of your time and conscious attention as possible." This involves dulling consumers' willpower with tricks learned from the gambling industry and psychology, ie, making people less autonomous. 

The debate about Facebook at the moment revolves around nefarious schemes by Russia to hack American elections. Social media executives are being hauled before Congressional committees to explain why their products should not be considered threats to democracy. But isn't the addictive nature of Facebook an even greater threat?




MORE ON THESE TOPICS | autonomy, bioethics, facebook, social media
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Are you lonely tonight?


Songs about loneliness are legion and range from the soppy and sentimental, like Roy Orbison’s “Only the Lonely” to the irony of the Beatles’ “Eleanor Rigby”. I’ve always been a sucker for Ralph McTell’s “The Streets of London”, with its piercing lyrics about homeless people in a big city. 

Perhaps the reason loneliness is such a potent theme is that we instinctively realise how dangerous it is. 

It turns out that loneliness is (a) a major social and health issue and (b) a widespread phenomenon. One US researcher has even estimated that it affects as many as 45% of retired Americans. This seems far too much, but the levels are certainly high. And since it increases the odds of an early death by 26%, I’d call it a challenge for bioethics. How can we heal the frayed and broken bonds of social cohesion?

A feature in this week’s JAMA examines the cost of loneliness – and the lack of solutions. We report on it below




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ShanidarCare


Stories like this have surfaced in BioEdge before, but I have always found them quite touching. We report below that researchers have found that a Neanderthal who lived in a large cave in Iraq about 50,000 years ago was terribly handicapped. Not only was he blind in one eye, missing a forearm, and crippled, but he was also profoundly deaf. With Pleistocene lions and tigers prowling in the neighbourhood, this was a big handicap for a forager.

How did he survive? His clan cared for him, tended to his needs, healed his wounds and protected him. He died at the ripe old age of 40 or 50 (equivalent to about 80 nowadays). Obviously Thomas Hobbes' infamous maxim -- that the life of man outside society is "solitary, poor, nasty, brutish, and short" -- needs to be revised. Primitive as they were, these Neanderthals had their own family-based version of Obamacare. 




MORE ON THESE TOPICS | disability
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Blazing Australia


If you are not inclined to be disputatious, don’t visit Australia at the moment. Across the country is a heated debate about same-sex marriage. According to the bookies, the Yes vote is set to win, although the No vote is giving its opponents a good run for the money. Newspapers are full of op-eds for and against; the broadcast media seems to be only “for”; and Twitter is going wild.

But something equally important is being debated: assisted suicide. The lower house of the state of Victoria yesterday voted for a bill which will legalise it. If it passes, other states will almost certainly follow. It will mark a dramatic turn in Australia’s law and medicine. But – compared to same-sex marriage – almost no one is talking about it.

What accounts for the difference? Oxford bioethicist Professor Julian Savulescu, writing in The Conversation, says that people fear death and like talking about sex and that in evolutionary terms, death is less important than reproduction. 

It’s an interesting question. I don’t believe that I agree with his answer. I think that people intuitively understand that control of marriage is the hinge of social life and are reluctant to redefine it.

But what do you think? Why is the debate over same-sex marriage so much more engaging than the equally important debate over euthanasia?




MORE ON THESE TOPICS | australia, euthanasia, same-sex marriage
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President Trump rewards pro-life supporters


During his campaign, President Trump promised pro-life voters that he would support their agenda. And he has delivered. He reinstated the Mexico City policy; he has cut funding to Planned Parenthood; he has rolledl back Obamacare's birth control mandate. And now a new strategic plan for the Department of Health and Human Services has definitely taken a pro-life turn, with references to protecting life from conception to natural death. "We are on track to seeing the most pro-life president this country has ever seen," says Tony Perkins, of the Family Research Council. 

Not everyone is happy about this. “This is a license to discriminate,” Susan Berke Fogel, director of reproductive health at the National Health Law Program, told Politico. “All of that language brings back all of these things that we’ve seen in the past that are just incongruous with really protecting health care and really improving people’s lives.”

What do you think? 




MORE ON THESE TOPICS | donald trump
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Go gentle?


The drugs used for executing American prisoners and the drugs used for assisting suicide are more or less the same. Do they guarantee that patients will, as in Keats' poem, "cease upon the midnight with no pain". 

Um, no, or at least no guarantees. Just as some prisoners are tormented in botched executions, some patients in the state of Oregon have taken the lethal drug, gone unconscious, and awakened -- sometimes days later. Read all about it in our lead article. 




MORE ON THESE TOPICS | assisted suicide
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Is drug addiction an illness?


Most of us have an ambivalent attitude towards drug addicts. Can they stop? No, their will power is shot to pieces. Will you invite one home to dinner? No, he’s a drug addict. However inconsistent it might be, we manage to dismiss addiction as morally serious and stigmatize them at the same time.

The Massachusetts Supreme Court is due to hear a case on drug addiction which could have wide-ranging consequences. Julie Eldred, an addict, relapsed while on parole and was jailed. (See story below.) But jailing her was wrong, according to the Massachusetts Medical Society, because opioid use is a chronic illness, not a character defect.

The opposite point of view is represented by 11 addiction experts in an amicus curiae brief. They argue that “Most addicts quit and do so on their own. Addiction seems to be among the most spontaneously ‘remitting’ of all the conditions termed major mental disorders, which is a very inconvenient fact for the position that addiction is a ‘chronic and relapsing brain disease.’”

The outcome of the argument will have immense legal and social consequences. If the addict is helpless in the grip of his or her disease, punishment makes no sense. The whole criminal law would change. To be continued....




MORE ON THESE TOPICS | drug addiction, massachusetts
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A Nobel Prize for bioethics?


There is a gap in the Nobel Prizes: there's no award for bioethics. There is the Nobel Peace Prize and the Nobel Prize for Medicine or Physiology. Both of them touch on bioethical issues in some fashion, but only tangentially.

True, some Nobel laureates have provoked bioethical controversies. The 1918 laureate in chemistry, Fritz Haber, was “the father of chemical warfare”. The 1956 laureate in Physics, William Shockley, was interested in eugenics and sterilizing people with IQs under 100. The 2010 laureate in Medicine, Robert Edwards, developed IVF. James Watson, the 1962 laureate in Medicine, was interested in designer babies. António Egas Moniz, the 1949 laureate in Medicine, developed the frontal lobotomy.

However, the time has come. As reported below, the 2018 Dan David Prize, worth US$1 million will be awarded “to an outstanding individual or organization in any field of the humanities or social sciences who have transformed our understanding of the moral and ethical significance of biological and medical innovations in our times.”

It appears that this will be the last time that the Dan David Prize will be awarded for bioethics. So it’s a great opportunity. Send us your nomination, with a brief explanation. If we get enough entries, we will publish them next week. 




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Belgian euthanasia under the microscope


For better or worse, this week’s newsletter seems largely dedicated to topics revolving around euthanasia. Belgium’s system is finally getting the close critical scrutiny it deserves in a new collection of essays from Cambridge University Press.

Coincidentally, the doyen of euthanasia there, Dr Wim Distelmans, has just released statistics about child euthanasia. “Nothing to see here; please move along,” seems to be his message. In three years, only two children have been euthanised. Perhaps that is an index of how normal euthanasia has become in his country.

Assisted dying is a hot topic, too, in Australia, in the states of Victoria and New South Wales. BioEdge has organised a free forum on NSW’s Voluntary Assisted Dying Bill on this coming Thursday in Sydney. It will be held at Parliament House, on Macquarie Street, from 9.30am to 12.30pm. A number of medical and legal experts will be discussing the possibility of legal euthanasia in New South Wales. For more details, please check our Facebook page.




MORE ON THESE TOPICS | belgium, euthanasia
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Is Planned Parenthood a Nobel Prize candidate?


Planned Parenthood is an organisation which inspires both love and loathing. One of its admirers is the Lasker Foundation, which has just presented it with the Lasker~Bloomberg Public Service Award for services to reproductive health.

Since many Laskers have gone on to win Nobels, PP is suddenly on the starting blocks for a Nobel Peace Prize. If it were only for its success in promoting contraception and abortion, it might be too controversial even for the Norwegian Nobel Committee. However, as a one-fingered salute to President Donald Trump, who has promised to defund PP, it could prove nearly irresistible. Read all about it below.  

On a completely different topic, if you happen to live in Melbourne and are free on Thursday evening, there will be a launch of my book, The Great Human Dignity Heist, in Carlton. The details are on our Facebook page. It would be great to meet lots of BioEdge readers there. 

Cheers,




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Revisiting “Father’s” Day


“Fatherhood” is what the guys in the business of policing the language call an “essentially contested concept” – no matter how much palaver you invest in it, you won’t make any progress. At least nowadays.

Below we feature a story from the Netherlands about two men who have each sired over a hundred children, one through sperm donation to IVF clinics, the other mostly through more conventional channels. Are they fathers?

Another story comes from Australia, which is girding its loins for a campaign on same-sex marriage. A group promoting closer links between fathers and their children, Dads4Kids, has been running a public service TV advertisement for 15 years. This year, a 30-second spot of a dad crooning to his wee sprog was rejected because it was “too political”.

A spokesman for the foundation complained:

“It is extraordinary that this is where we have come to as a country; we can no longer celebrate Father’s Day without being forced to look at it through the lens of the same-sex marriage debate. It’s a tragedy that a political motive is now implied in any mention of fatherhood. Not everything is about same-sex marriage.”

The history of this simple advertisement tracks the evolving concept. In a span of 15 years, fatherhood, or rather “fatherhood”, has shifted from a universally admired status to a politically suspect notion. Are we the better for it?

Happy Father’s Day to our Australian readers. 




MORE ON THESE TOPICS | fatherhood
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Thousand dying in Yemen of cholera


One unfortunate consequence of the omphalocentric state of American politics is that cries for help from the rest of the world are a mosquito’s buzz in a theatre full of bellowing politicians. President Trump’s antics suck all the air out of media interest in overseas tragedies.

One of these, as reported below, is a cholera epidemic in Yemen which has affected half a million people and killed about 2,000. The medical system in this country of 27 million has all but collapsed. About 10,000 civilians have died. Seven million are close to famine.

The United Nations has described Yemen as “the world’s largest humanitarian crisis” and The Lancet has compared Western indifference to its slowness in responding to the Rwandan genocide.

Notwithstanding his “America first” policy, Donald Trump promised that his country would “continue and continue forever to play the role of peacemaker”. Of course, the war in Yemen is a complex conflict in which the two sides are proxies for the Shia state of Iran and the Sunni kingdom of Saudi Arabia. But surely the US could help engineer a solution – if its president was not so busy arguing over Civil War statues and sacking his closest aides. 




MORE ON THESE TOPICS | yemen
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Psychiatrists versus Trump


President Donald Trump was elected because he promised to break moulds and drain swamps. “And now for something completely different” was basically the platform on which he campaigned. And something completely different is what Americans got.

Now is this difference due to mental illness or to a combination of personality and cunning political strategy? Yale University psychiatrist Dr Bandy Lee believes that it is the former. Trump is both bad and mad. In fact, not only Trump. In an interview with Salon, she said that the Administration and the Republican Party have lost touch with reality.

Is it a good idea for a psychiatrist to politicise her profession? The American Psychiatric Association asks its members to abide by the “Goldwater Rule” which forbids them from making public comment on the health of public figures whom they have not examined. It’s a good rule and Dr Lee is breaking it by publishing a book, The Dangerous Case of Donald Trump in October.

It’s a good rule because it protects the profession. Although half of Americans probably think Trump is mad without the benefit of Dr Lee’s input, the other half, including some psychiatrists, doesn’t. Inevitably many voters will think that Dr Lee is just a shill for the Democrats and that psychiatrists’ opinions can be bought.

What do you think? 




MORE ON THESE TOPICS | donald trump, goldwater rule, psychiatry
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Towards Belmont 2.0


In a recent article in the American Journal of Bioethics, bioethicist Art Caplan and three colleagues call for a complete overhaul of the venerable Belmont Report (see below). This is the 1979 US government report which set out three famous principles which have governed human research ever since: respect for persons, beneficence, and justice.

Most government reports are already gathering dust within a few months after their publication. But the Belmont Report’s influence has been enormous, as it shaped the bioethical framework for clinical and research decision-making in the US and many other countries as well.

Caplan & Co make a good case for revising the standards in the light of experience and changing times. But it comes at an awkward moment: the Trump Presidency.  What kind of commission would Mr Trump create to study this issue? Perhaps a noisy and truculent one, a bull in the bioethics china shop. Be careful what you wish for? 




MORE ON THESE TOPICS | belmont report
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Shameless self promotion


We have a number of very important stories this week: a paper in Nature about gene-editing human embryos, a rise in euthanasia figures in the Netherlands, some appalling news about commercial surrogacy in India... plus a great interview with Yale bioethicist Lydia S. Dugdale about death and dying. 

But, for better or worse, this is a day for shameless self-promotion. Sorry. I have just published a book, The Great Human Dignity Heist, a collection of short essays on topics ranging from IVF to paleo-archaeology to polio epidemics to euthanasia and cannibalism. Its lurid sub-title is How bioethicists are trashing the foundations of Western civilization

If you live in Sydney, you are invited to a book launch at 1pm on this coming Thursday, August 10, at Parliament House, Macquarie Street, Sydney. Professor Margaret Somerville will be the main speaker. (RSVP to mcook@mercatornet.com.) 

And of course, if you cannot make it, feel free to order a book online

In Australia from the publisher, Connor Court
https://goo.gl/V1vF8V 

In the US and Canada from Amazon (feel free to leave a review of the book!)   
https://www.amazon.com/Great-Human-Dignity-Heist-Bioethicists/dp/1925501469/ 

Cheers




MORE ON THESE TOPICS | great human dignity heist
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The drama of little Charlie Gard


We're back! And although the northern hemisphere summer is normally a slow-news season, bioethics has been on the front page of world newspapers.

The drama of the dying British baby Charlie Gard, his loving parents, the doctors at Great Ormond Street hospital in central London, and the English law has captured the imagination of people everywhere.

To be honest, I am not sure whose "side" I should be on. Parents should normally make healthcare decisions for their children.

But there are cases in which their choices are plainly wrong -- as a Swedish doctor suggests below in his version of the mysterious resdignation syndrome among refugee children -- and the advice of doctors should be heeded.

Which was the case here? We'd love to hear from you. 




MORE ON THESE TOPICS | bioedge, charlie gard
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BioEdge on holidays


There is plenty of variety in this week’s BioEdge: a euthanasia pioneer surveys its progress in the Netherlands; a neuroethicist despairs over ‘fake news’; a legal expert assesses the chances of Noel Conway’s assisted dying request in the UK; an important new paper asks whether puberty suppression for transgender kids is ethical...

But the big news is that BioEdge (and its editor) are taking a solstitial holiday for a few weeks. The next issue will arrive on about July 21.

Cheers,




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Michelle Carter found guilty


A Massachusetts woman has been found guilty of involuntary manslaughter in a case which was reported across the United States and could affect the debate about assisted suicide.

In 2014 Michelle Carter, then 17, used phone calls and text messages to bully her boyfriend, Conrad Roy III, 18, into asphyxiating himself in his car.

Their relationship was a bizarre one. Although they lived only an hour away from each other, they met in Florida on family holidays. Thereafter they only met each other a handful of times. But they texted each other incessantly, especially about Roy’s desire to kill himself. Ms Carter encouraged him.

However, when he was sitting in his car and the fumes were building up, he got out, clearly wanting to live. She instructed him to get back in. He did and he died.

There are two schools of thought about Ms Carter’s bullying. Most people would agree with the judge that she had a duty to try to save Roy’s life and acted in a “wanton and reckless” manner.

But others, while acknowledging that her words were reprehensible, point out that Massachusetts has no law against assisted suicide and that words are not bullets. They argue that her incitement was protected free speech.  

The American Civil Liberties Union has yet another reason why Ms Carter should have been acquitted: “If allowed to stand, Ms. Carter’s conviction could chill important and worthwhile end-of-life discussions between loved ones.” In other words, this throws sand in the gears of legalising assisted suicide.

What do you think? 




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Not a happy camper


We may have over-egged today’s newsletter with stories about surrogacy, but they all appeared this week with a common theme: what about the mothers? The accepted wisdom is that most mothers are well compensated and give up the child happily.

Not always.

Take the case in England of a surrogate mother who has just been jailed for 22 weeks for stalking a judge and a court welfare officer. The terrified family court judge had awarded the child she bore to the commissioning gay couple even though Lian Harris had changed her mind and wanted to keep it.

Ms Harris snapped.

Over a year she harassed the judge, protested outside the house of politicians and lawyers, unfurled a banner on Westminister Cathedral saying “Family courts do evil”, attempted to fasten herself to the second-floor balcony of the social worker’s home, and tried to organised harassment on Facebook, amongst other stunts.

Not a happy camper.

Ms Harris is said to be an exceptional case. But how do we know? Where are the longitudinal studies to prove that surrogate mothers live happily ever after once they surrender the child they carried for nine months?




MORE ON THESE TOPICS | surrogacy, surrogate motherhood
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Bioethicists: dust off your resumes


Now that President Donald Trump has backed out of the Paris Climate Change agreement, employment prospects for bioethicists may pick up. Let me explain.

The boundaries of bioethics are very elastic, and on some maps they include care for the natural environment. I would predict that in the measure that scientists lose faith in a political solution to global warming, some will back geoengineering projects to cool the planet.

These include tactics such as injecting aerosols into the upper atmosphere, dumping iron filings into the sea to promote algal blooms, and machines to capture carbon dioxide. These involve significant risk and place great power in the calculations of technocrats. They need to be studied very carefully. As University of Chicago climate scientist Raymond Pierrehumbert said a few years ago, “I see lots [of geoengineering ideas] that are feasible but they all terrify me.”

A 2010 conference on the ethics of climate intervention at Asilomar, in California, addressed some of these issues using principles drawn from the famous Belmont principles of autonomy, beneficence, non-malificence and justice. And who knows more about these than bioethicists? Dust off those resumés. 




MORE ON THESE TOPICS | climate change, geoengineering
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Sorry for the delay


I can't say that I agree with Nietzsche on everything, but he was onto something when he wrote, "what does not kill a database makes it stronger". 

We were hit by a bug over the weekend and this mini-Götterdämmerung  has delayed the newsletter. But soon, touch wood, it will be stronger than ever. Thanks, Friedrich. 




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If there is a market, let’s legalise and regulate it


The Economist is the world’s best news magazine. Its stylish, intelligent and well-informed coverage has made it the Bible of the global elite. “I used to think. Now I just read The Economist,” the former CEO of Oracle, Larry Ellison, once said.

Part of its appeal is its ideological consistency. Ever since 1843 The Economist has argued that aim of public policy should be to promote the market economy as the best way of achieving prosperity and democracy. A light touch of government regulation is needed only to ensure fairness and legal certainty. Thus it embodies the “classical 19th-century Liberal ideas” which made Britain, and later the United States, a bulwark of capitalism.

Whatever the merits of this ideology in framing public policy for economics and finance, it is ill-suited to questions of personal behaviour.

In principle The Economist supports all autonomous action which is either harmless (in its view) or profitable. Hence, in recent years it has thrown its considerable prestige behind campaigns for the legalisation and regulation of drugs, pornography, prostitution, euthanasia, and same-sex marriage.

And this month it has taken up cudgels in favour of an international market in surrogate mothers and babies. “Carrying a child for someone else should be celebrated—and paid”, is the defiant headline of its editorial. Given the magazine’s influence, this is a significant development. What do you think of it? 




MORE ON THESE TOPICS | surrogacy
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Ooops! Sorry about that


I'm afraid that we are having a few issues with the software behind BioEdge. We've upgraded it, largely to ensure security -- which seems like a Very Very Good Idea in the light of what happened this week to Britain's National Health Service.

Unfortunately upgrades always have a few bugs. We are slowly working through them, but as we prepared this issue of the newsletter, we discovered a few glitches that we hadn't anticipated. So we ask for your patience. Hopefully we'll have them fixed up by next week. 




MORE ON THESE TOPICS | bioedge
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Euthanasia in Belgium interviews


Euthanasia is such a controversial topic that it is dividing healthcare professionals and organisations. In Canada, some doctors are vigorously protesting moves to make effective referral for euthanasia mandatory. And in Belgium, a Catholic religious order seems to have split over whether its psychiatric hospitals should offer euthanasia for non-terminally-ill patients. Below we feature interviews with the main players in this drama: Brother Rene Stockman, the Rome-based head of the order who is fighting a change of policy, and Raf De Rycke, who helped to shape the new policy. 




MORE ON THESE TOPICS | belgium, catholic church, euthanasia
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Even more developments in Belgian euthanasia


The Belgian media was abuzz this week with the news that the Catholic hospitals which provide a substantial portion of psychiatric beds will permit euthanasia for non-terminally-ill patients. It is an unprecedented reversal of their stand on end-of-life care.

Supporters of euthanasia, of course, were delighted. “The last relics of the paternalism of the shepherd have been replaced by individual self-determination," said one politician. Opponents, however, were puzzled and alarmed. Fifteen years after Belgium legalised euthanasia, it has become hard to find a hospital where is it not being practised. Read about it below. 




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Fake news and BioEdge


We’re back from the Easter holidays, which in Australia are far longer than elsewhere, thank goodness. To get back into the rhythm of things, we have published two articles about “fake news” and bioethics. One reports that prospective IVF parents in Mississippi discovered to their horror that they were twins separated at birth. This went around the world before some spoilsport blew the whistle on it. The other is an announcement by British billionaire Richard Branson that he is setting up a sperm bank for dyslexics. Branson being Branson, it’s hard to tell whether this is fake news or not, but I suspect that it is.

The problem with BioEdge, some readers tell us, is that everything sounds like fake news. This, of course, is not true; we take great care to check our sources. However, all too often the articles seem to have been composed in some gigantic facility manned by bad news elves.

In fact, when you read today’s lead story, “Euthanised organ donors could dramatically shorten waitlists in Belgium, say doctors”, I must concede that it does sound so implausible as to be fake. But it’s not a report from The Onion, but from the Journal of the American Medical Association. Go figure. 




MORE ON THESE TOPICS | fake news
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Khan Sheikhun


The civil war in Syria may have moved into a dangerous new stage. President Trump ordered a strike on a government air force base, blaming the regime for dropping sarin, a lethal chemical weapon, on a northern town. He announced his decision in an emotional speech:

"Assad choked out the lives of innocent men, women and children. It was a slow and brutal death for so many. Even beautiful babies were cruelly murdered in this very barbaric attack. No child of god should ever suffer such horror."

As everyone knows, there are no good guys in this appalling war. The attack on Khan Sheikhoun was just more spectacular than the daily slaughter of three here, a dozen there. If you consult the website of the Syrian Observatory for Human Rights or Syria Deeply, the headlines are enough to make anyone weep. One of the most distressing aspects of the conflict is the "weaponisation of healthcare" -- deliberately targeting medical personnel and facilities to terrorise the population. You can read about it below




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Do you remember the Zika virus?


Here’s something very odd. Back in 2015 terrifying news came from Brazil about an epidemic of microcephaly – babies born with very small heads and brain damage. It seemed to be associated with the mosquito-borne Zika virus. Neighbouring countries prepared for the spread of Zika with a sense of dread. Lobby groups urged relaxation of abortion restrictions.

But how often in the past six months have we heard about the Zika virus and microenphaly? A graph on Google trends shows that it has dropped off the media’s radar. With good reason – there has been no epidemic of microcephaly. The experts expected 1,000 cases, but there were only about 100.

Nobody knows why this is. There is an association between Zika and microcephaly, but it must be more complicated than scientists first thought. An article in the NEJM this week reports the good and canvases a number of explanations. It may be that for microencephaly to occur, a woman needs to contract both Zika and Dengue fever.

Perhaps there is a lesson here – however bad the news is, DON'T PANIC!! In particular, there is no need to push for changes in abortion legislation before we know all the facts...




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The transhumanist project and personal autonomy


A number of the eminences of Silicon Valley are besotted with immortality. Google, PayPal co-founder Peter Thiel, and Facebook’s Mark Zuckerberg are a just a few names amongst the many who want to do away with death, or at least add a few decades, or even a few hundred years, to their lifespans.

Even if this is achievable, is this desirable?

British sci-fi author and futurist Paul Graham Raven has written a blistering demolition of the transhumanist project. (Hat-tip to Wired.) It is basically a philosophy for selfish (and mostly white) rich guys, he suggests.

it turns out that technologies which extend, augment or otherwise improve human life are already here! You may have heard of some of them: clean water; urban sanitation; smokeless cooking facilities; free access to healthcare; a guaranteed minimum income; a good, free education. There are more – and you’d be surprised how many of them have been around in one form or another for decades, even centuries! But they’re unevenly distributed at the moment, so the first agenda item for all transhumanists should be looking for ways to get these technologies to everyone on the planet as soon as possible

But that is unlikely to happen. In their single-minded focus on maximising their own welfare, dedicated transhumanists are deaf to the needs of the society: “You look after yourself, I’ll look after me; what could be fairer than that?” Raven writes caustically. Come to think of it, this critique of personal autonomy could be applied to a number of other areas in bioethics. 




MORE ON THESE TOPICS | autonomy, transhumanism
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Mortal remains


One of the star exhibits in the Royal College of Surgeons' Hunterian Museum of anatomy in London is the skeleton of Charles Byrne, an 18th Century Irishman who was about 8 feet tall. However, the museum is to close in May for renovations and there are calls to use the opportunity to remove or bury the remains. Does this make sense?

A celebrity in his day, Byrne died in 1783 of ill health and drink in London. He knew that John Hunter wanted to dissect him after his death, so he directed his friends to sink his body in a lead-lined casket in the English Channel. Alas, Hunter succeeded in stealing the body anyway and it eventually turned up in a display case.

Similar events darken the history of the Australian state of Tasmania. The last full-blood Aboriginal Tasmanian, William Lanne, died in 1869. Although the story is murky, it appears that before his funeral the Surgeon-General of the colony, William Crowther, stole his head for “scientific study” and someone else removed his hands and feet. There is no record of scientific studies. Crowther went on to become premier, and an impressive bronze statue of him was erected in the centre of the city.

The last full-blood Aboriginal woman in Tasmania, Truganini, was terrified that the same thing would happen to her and directed that her body be cremated. Her wishes were ignored and her skeleton ended up in a display in the Hobart Museum. It was finally cremated in 1976.

Nowadays body-snatching would not be tolerated (although the Hunterian Museum still refuses to remove Byrne’s body from display). But the notion that scientific curiosity is its own justification persists. University of Tasmania historian Stefan Petrow points out, that the fate of Lanne and Truganini demonstrate “the hegemony scientific knowledge sought to establish over fundamental human rights such as a decent burial”. Can’t the same thing be said about some aspects of stem cell research? 




MORE ON THESE TOPICS | body-snatchers, charles byrne, irish giant, tasmania, turganini, william lanne
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When is illness ‘terminal’?


A State Senator in Hawaii, Breene Harimoto gave an emotional address this week to persuade his colleagues to vote against a bill for legalising physician-assisted suicide for the terminally ill. He said that in 2015 he had been diagnosed with pancreatic cancer, which has a low survival rate and can be quite painful. But he was cured. “It is a miracle that I am still alive,” he said.

His point was that “terminal illness” is almost meaningless. Margaret Dore, a Seattle lawyer who lobbied against the bill, recalls an even more dramatic incident. “A few years ago, I was met at the airport by a man who at age 18 or 19 had been diagnosed with ALS (Lou Gehrig's disease) and given 3 to 5 years to live, at which time he would die by paralysis. His diagnosis had been confirmed by the Mayo Clinic. When he met me at the airport, he was 74 years old. The disease progression had stopped on its own."

If Senator Harimoto or Ms Dore’s friend had the option of assisted suicide, they might stopped fighting their disease and chosen a quick death. They would have chopped decades off their lives. “Terminal illness” is a pillar of assisted suicide legislation – and it just doesn’t make sense. 




MORE ON THESE TOPICS | assisted suicide, terminal illness
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Parramatta enters the bioethics debate


Parramatta is just 20 minutes west of the BioEdge office. It’s not a city which has made a huge mark on the world, although not long ago an ISIS-inspired teenager shot dead a police employee and ended up dead himself. It has a lot of historic buildings from the colonial era, surrounded by high rise office buildings, drab shops and a huge park.

A few weeks ago the park hosted Tropfest, billed as the world’s largest short film festival. The crowds watched the films on huge screens as they picnicked on the grass. I was amazed that the winner was a 7-minute film about euthanasia, “The Mother Situation”. With excellent acting and snappy dialogue, it is a brilliant black comedy. Three adult children are delighted to hear that their mother wants to be euthanised – but then she changes her mind.

The director, Matt Day, says that it is not an anti-euthanasia film, but I haven’t seen anything which illustrates more vividly the danger of elder abuse. Sure, it’s absurd and a bit unrealistic but it sends a powerful message. Check it out




MORE ON THESE TOPICS | euthanasia, parramatta
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Coping with post-election stress disorder


We’ve often blamed the pharmaceutical industry for medicalising the normal ups and downs of life. But journalists are not above disease-mongering. I’ve just noticed a promising new ailment to which members of the Fourth Estte themselves are particularly susceptible: post-election stress disorder.  

According to columnist in Psychology Today, “Countless Americans are reporting feeling triggered, traumatized, on edge, anxious, sleepless, angry, hopeless, avoidant of connection, alone, and suddenly haunted by past traumas they believed they had buried” because of the Trump election.

As of now, no pharmaceutical company is marketing a drug to cure these anxieties. Instead, therapists are recommending a range of behavioural strategies for dealing with the stress. “I advise my clients and friends affected by the election and its aftermath to reach out, connect, affiliate and show compassion for those similarly affected,” wrote Steven Stosny in the Washington Post.

Some people are indignant that Post-Traumatic Stress Disorder after battle is being compared to discouragement after an election loss. Republican Congressman Brian Mast lost both legs in Iraq because of a roadside bomb. Let him have the last word:

There was a big missed opportunity in naming it ‘Post-Election Stress Disorder,'” he says. “I would have preferred they name it ‘Post-Inauguration Stress Disorder,’ that way they could have called it ‘PISD.’ There’s a big difference between being pissed off about things and what happens on the battlefield.”




MORE ON THESE TOPICS | donald trump, medicalization, post-election stress disorder
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Churchill on science


Winston Churchill was once voted the “greatest Briton of all time” in a BBC poll, edging out Isambard Kingdom Brunel (who?), Lady Diana, Shakespeare and John Lennon. Now, in addition to his gifts as a statesman and politician, orator and historian (and artist), we have been reminded that he helped to popularise science as well.

As reported in Nature, an historian has discovered an 11-page manuscript which Churchill penned in 1939 but never published, speculating about life on other planets. It turns out that the great man was deeply interested in modern science and followed developments keenly. Gazing at the gathering storm, he wrote pessimistically:

“I, for one, am not so immensely impressed by the success we are making of our civilization here that I am prepared to think we are the only spot in this immense universe which contains living, thinking creatures, or that we are the highest type of mental and physical development which has ever appeared in the vast compass of space and time.”

But despite the reminder that Churchill was a fan of science, it’s also good to remember that he believed that there were moral limits to science. In one of his most famous speeches, he foresaw dark days for the world if Germany were to win the War:

If we can stand up to [Hitler], all Europe may be free and the life of the world may move forward into broad, sunlit uplands. But if we fail, then the whole world ... will sink into the abyss of a new Dark Age made more sinister, and perhaps more protracted, by the lights of perverted science. Let us therefore brace ourselves to our duties, and so bear ourselves that, if the British Empire and its Commonwealth last for a thousand years, men will still say, "This was their finest hour."

Science, so Churchill believed, was fascinating, but not good in itself. It had to be governed by morality, lest it become “perverted”. It’s not a bad reminder for us, three generations on, as we enter an era of genetic engineering. 




MORE ON THESE TOPICS | science, winston churchill
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Controversial solution to self-harm


A child who self-harms must be one of the most agonising experiences a parent can have. But it is relatively common. A study in The Lancet a few years ago found that about 1 in 12 teenagers, mostly girls, engaged in self-harming behaviour, with the most common methods cutting or burning. Most of them stop as adults, but some continue. It is a phenomenon which still seems to baffle the medical profession, despite the abundance of statistics.

In this issue of BioEdge, we report on an interesting response to self-harm, at least for some patients – educate them to minimise the harm, but supply them with razors. Given that harm minimisation is a popular public policy approach in other areas, like drugs, this makes some sense. But I think that most people will regard it as quite confronting. What do you think?  




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Introducing “In Depth”, our comment section


We have introduced a new feature in BioEdge this week. It’s a new section called “In Depth”, where we plan to feature commentary, analysis, background and interviews.

This week Clark Hobson, of the University of Leicester, in the UK, argues that assisted suicide has a chance of becoming law in Britain through the courts, not through Parliament. In previous cases the courts have stated that Parliament must address the ban on assisted suicide appropriately. If it does not act, the Supreme Court might find that the ban infringes Article 8(1) of the European Convention of Human Rights (ECHR).

It’s an intriguing argument, one that will cheer supporters and dismay opponents of assisted suicide. Of course, Theresa May, the Prime Minister, has vowed to make withdrawal from the ECHR a central plank in the 2020 election, so there might not be much time... 




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POTUS and torture


It beggars belief that the leader of the free world and the world’s policeman, the President of the United States, thinks that torture is not a bad thing. On the campaign trail he insisted several times that torture works and that even if it didn’t “they deserve it anyway, for what they’re doing.”

Now that he is in office, however, Mr Trump seems to be having a two-way bet. While personally in favour of waterboarding, he is deferring to the opinion of his Secretary of Defense, James Mattis, a tough and experienced soldier, who says that it does not work. In this way, he keeps faith both with voters who want him to be tough on terrorism and voters who want him to rebuild the military.

So the upshot of this week’s confusing news about a draft executive order from the President permitting “enhanced interrogation” techniques is that no one really knows what he believes. But it is an ominous sign that Mr Trump’s moral compass is so weak that he resiles from repudiating torture, keeping it in reserve as a potential vote-winner. In a civilised society which respects human dignity, torture should be absolutely unthinkable.




MORE ON THESE TOPICS | donald trump, torture
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President Donald Trump


Donald Trump was a different sort of candidate and he gave a different sort of inaugural speech. It was short, sharp, divisive and isolationist, the kind of remarks that often precede a massive swamp-draining project. But in one respect it was similar to speeches by other presidents: bioethics was not a major theme.

He did say that "We stand at the birth of a new millennium, ready to unlock the mysteries of space, to free the earth from the miseries of disease" -- which sounds vaguely promising for scientific and medical research.

His twice-repeated invocation of the Almightly suggests that he might follow a Christian line on controversial issues like contraception, abortion and assisted suicide. 

But who knows? Mr Trump is a bit like that quintessentially American poet Walt Whitman -- "Do I contradict myself? Very well then I contradict myself, (I am large, I contain multitudes.)" No one really knows what he has in mind about a range of topics. Buckle up. It's going to be a bumpy ride.




MORE ON THESE TOPICS | donald trump
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Waste not, want not


Transplant surgeons in Belgium and the Netherlands are already harvesting organs from patients who have requested euthanasia. Could this happen in Canada, the new kid on the euthanasia block? Perhaps. In a recent article in the Journal of Medical Ethics, two bioethicists from Quebec argue that organ donor euthanasia is a homage to autonomy and needs to be legalised. Apparently the Quebec government and the society of transplant surgeons in Quebec are on board.

Of all the bad ideas associated with euthanasia, this must be one of the worst. The potential for exploiting vulnerable people is immense. Imagine that you are a quadriplegic. Your organs are healthy; you are lonely, frustrated, discouraged. You see a TV program in which a doctor praises the unforgettable generosity of So-and-so whose life was not worth living but found a way to give life to others, etc, etc. Wouldn't you think of ringing up the doctor and asking him how to go about it? 

Will Canada be able to stop this from happening?




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Happy Christmas!


All the best to our readers for a Merry Christmas and a Happy New Year! BioEdge will be taking a break for a while. Our next email will arrive, depending on your time zone, around January 11. We plan to move to a mid-week, rather than a weekend, mail-out. 

Quite a few people have responded to our fund-raising campaign. We are very grateful for your support and generosity. The funds will help us to redesign the website in the new year. 




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The dignity of Mr 66 Garage


When there’s talk of border crossings and illegal Mexican migrants, my thoughts used to turn to the ugliness of Donald Trump’s dream: "I will build a great wall -- and nobody builds walls better than me, believe me --and I'll build them very inexpensively. I will build a great, great wall on our southern border.”

But after reading a remarkable feature in California Sunday Magazine, I’m trying to think about 66 Garage instead. The name of Mr 66 Garage may not ring a bell with you, but to be fair, it doesn't ring one with him either. He is an undocumented migrant whose truck overturned on a border crossing in June 1999. He hit his head and never woke up.

Ever since, 66 Garage has lived in a persistent vegetative state in a San Diego nursing home where he is given round-the-clock care. What a country America is! It produces a politician who treats illegal migrants as if they were cockroaches and nurses who treat them as if they were their own family.

Anyhow, this 18-20-year-old man had taken the “undocumented” part of his journey seriously. He could not be identified and the nursing home christened him 66 Garage, although some of the staff protested that it was undignified. A wonderful woman named Paula visited him every week for 15 years and wondered who he was.

There are thousands upon thousands of missing migrants and their relatives are desperate to find them. A photo of 66 Garage has been shared more than 300,000 times on Facebook. Earlier this year a friend of Paula’s took an interest in the case and 66 Garage was finally fingerprinted. A match led to his sister in the southern state of Oaxaca. Now she can wave at him over Skype on his birthday.

It’s a remarkable story about vulnerability, dignity, blood ties, and American generosity. Read it.




MORE ON THESE TOPICS | illegal migration, mexico, united states
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Reflections on California’s assisted suicide legislation


California’s assisted suicide law came into effect on June 9. Betsy Davis, an artist with ALS, also known as Lou Gehrig’s disease, was one of the first to take advantage of the legislation. She drank a lethal cocktail on July 23, after a long party with close friends. I’m afraid that we missed the story at the time.

Reading her sister’s account of Betsy’s death, which is full of loving sorrow at her passing, I was struck by how quickly Californians started to ignore all the careful safeguards. It is clearly specified in the law that the person must “self-administer” the drug. But she was too weak to hold the cup and drink it quickly, so her friends held it for her. They may have broken the law.

People tend to think that a lethal barbiturate brings about death quickly. This wasn’t true in Betsy’s case – she lingered on for four hours. Given that the drug was a homemade cocktail of morphine, pentobarbital and chloral hydrate which smelled like paint, her friends were “lucky” that it worked. Some assisted suicide patients in Oregon have woken up to discover that their suicide has failed.

It wasn’t a good beginning for the law. 




MORE ON THESE TOPICS | assisted suicide safeguards, california
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