The end-of-life wishes of a gold medallist at the Paralympics have again raised the question of what makes a Belgian eligible for euthanasia.

Marieke Vervoort won a silver in the 200 metre wheelchair sprint and a gold in the 100 metre event. But she has told the media that she may request euthanasia after competing at Rio. “Rio is my last wish, hopefully I can finish my career on the podium,” Vervoort said in an interview with Le Parisien. “I have a bucket list, including stunt flying, and I have started to think about euthanasia.”

Ms Vervoort has a degenerative disease which causes her great pain, but she can still compete at a high level in a range of sports, including basketball, swimming and triathalons.

"When I sit in my racing chair, everything disappears,” she told Le Parisien. “I expell all the dark thoughts; I fight off fear, sadness, suffering, frustration. That's how I won the gold medals."

But after Rio she says that she will have nothing to live for. “"Everybody sees me laugh with my gold medal, but no one sees the dark side,” she says. “Sport is my only reason for living."

She suffers from intense pain at night and has severely impaired vision. She first investigated euthanasia as long ago as 2008. When she takes the final step, she says, “I want everybody to have a glass of champagne in their hand and a happy thought for me.”

As is often the case in news about Belgian euthanasia, the name Wim Distelmans, the country’s leading euthanasia doctor, crops up. Ms Vervoort is the “ambassador” of Wemmel, his think-tank at the Free University of Brussels. He told De Standaard that she is an example of how the possibility of euthanasia extends lives. "Not just because people do not commit suicide. There are other things too. The certainty that there is an emergency brake to stop the intolerable suffering gives one peace. That frame of mind lets one live longer."

Nonetheless, questions remain. If Ms Vervoort can overcome her pain to strive for Olympic gold, are there no other goals that Dr Distelmans can help her set so that the world will not lose this extraordinary woman to euthanasia? More starkly than ever, this case underscores the suspicion that euthanasia is an existential, not a medical, challenge. 

Influential Australian journalist Andrew Denton has launched a new campaign for assisted dying in Australia, and called on the Catholic Church to "stay out" of the euthanasia debate.

Denton, a well-known radio and television personality, delivered a scathing address to the Australian Press Club on Wednesday in which he called for rapid law reform: "To the politicians of South Australia...and to those of Victoria, Tasmania and NSW, who can expect new Bills within the year – I urge you: Do your duty."

Denton claimed that the failure to legalise euthanasia in the country was the result of a "subterranean" network of religious politicians and businessmen.

"...on the questions that are most fundamental to how we live, love and die, religious belief trumps everything. This is the theocracy hidden inside our democracy."

He also used the occasion to launch a pro-euthanasia lobby group Go Gentle Australia.

Denton’s speech generated significant controversy. The Australian Christian Lobby slammed the media personality for his misguided claims of a “religious conspiracy”, and for sending a negative message to vulnerable people.

Denton also accused Labor shadow minister Tony Burke of stifling earlier attempts to legalise euthanasia. Burke rejected the claims: “Pretending my faith determines my political views hits a pretty clear wall when you consider my support for marriage equality. The claim past debates were driven solely by religion doesn’t explain why many atheists and people such as Lindsay Tanner and Barry Jones held the same view as me.”

“Will Embryonic Stem Cells Ever Cure Anything?” is a sceptical headline which you would expect to read in a conservative journal like the National Review or the Weekly Standard. However, it is a bit surprising to find it in the MIT Technology Review, in a profile of Douglas Melton, a Harvard stem cell scientist.

… no field of biotechnology has promised more and delivered less in the way of treatments than embryonic stem cells. Only a handful of human studies has ever been carried out, without significant results. The cells, culled from IVF embryos, are capable of developing into any other tissue type in the body, and therefore promise an unlimited supply of replacement tissue. Sounds simple, but it hasn’t been.

Melton’s specialty is diabetes. Because this is a complex and widespread disease, governments and companies are willing to spend huge amounts of money to find a cure. They will continue to fund embryonic stem cell research – but whether it succeeds is still unknown. 

A safer and more accurate screening test for Down Syndrome is set to become available on the UK’s National Health Scheme, raising concerns about increased termination of babies with disabilities.

The new screening procedure, known as a cell-free DNA (cfDNA) test, detects and analyses fragments of the baby’s DNA in the mother’s blood.

In a recent study published in the New England Journal of Medicine, researchers found that cfDNA test “had higher sensitivity, a lower false positive rate, and higher positive predictive value than did standard screening”. The false positive rate was just 0.06 percent as compared to 5.4 percent for standard screening.

Doctors are enthusiastic as the test means fewer women will need further, invasive procedures (such as amniocentesis) to confirm initial results. Women with abnormal non-invasive test results will still be recommended an amniocentesis or CVS test as confirmation, but far fewer will be needed overall.

Parents of children with Down Syndrome have expressed concern. In a letter to UK Health Secretary Jeremy Hunt, the campaign group Don’t Screen Us Out said that if the NHS funded the treatment it would “result in a profound increase in the number of children with Down’s syndrome screened out by termination”.

Dr Elizabeth Corcoran, of the Down’s Syndrome Research Foundation, said: “We demand Jeremy Hunt halt the roll-out of Non-Invasive Prenatal Testing (NIPT), and listen to the views of people with Down’s syndrome and their families. Make no mistake, this is will not be to the benefit people of with Down’s syndrome, born or unborn.”

Australia has seen a sharp rise in the use of unproven stem cell treatments, with sham clinics exploiting loopholes in government regulations.

A small number of evidence-based stem cell treatments (such as bone marrow transplants) are routine around the world, but certain treatments in Australian clinics are unproven and based largely on anecdotal evidence.

A paper published in Cell Stem Cell reported that stem cell clinics “not only pre-emptively proceed to marketing [new treatments] in advance of reporting, review, and approval, they often claim broader clinical benefits than can be justified by the specific indications they purport to have tested”.

One of the lead authors of the paper, Professor John Rasko, of the University of Sydney, called on the Therapeutic Goods Administration (TGA) to close loopholes in regulations governing the provision of stem cell treatment in Australia.

“[The regulatory loopholes] allowed doctors to take cells from any parts of the body, manipulate them and reinject them into the body,” Rasko said. “It took shonky clinics years to realise they could take advantage of this but take advantage they certainly now have.”

In June, a 75 year old New South Wales woman died as a direct result of a stem cell treatment that doctors said would alleviate the effects of her dementia.

TGA regulations state that autologous treatments – treatments where stem cells are taken from the recipient's own body – are not therapeutic goods and therefore cannot be regulated.

The TGA has conducted a public consultation on whether regulations should be extended to autologous treatments, but are yet to act on the recommendations.

Following the legalisation of assisted suicide in California, the Department of Corrections and Rehabilitation (CDCR) has proposed regulations that will prohibit prisoners from receiving “aid in dying”.

The regulations, issued for public comment late last week, are intended to prevent prisoners from “accessing aid-in-dying drugs under the End of Life Option Act”. They also prohibit “CDCR employees, independent contractors and other persons and entities from participating in activities under the End of Life Option Act.”

Prisoners are to be provided with “healthcare appropriate and necessary to their situation”, and the regulations are said to “ensure the health, safety and security of inmates”.

The End of Life Option Act states that Californian residents with a terminal illness and less than six months to live are eligible to receive assistance in dying.

Recently an artist suffering from Lou-Gehrig’s disease held a “Right to Die” party in Ojai, CA, before becoming one of the first Californians to end their life under the new laws. Forty-one- year old Betsy Davis referred to her suicide as “rebirth”, and her sister Kelly said of her pre-death celebration that she had “turned her departure into a work of art”. 

“Growing old isn’t so bad when you consider the alternative,” used to be a joke. But for supporters of legalised euthanasia, the alternative looks better than growing old. Some recent research shows that there is some confusion about the aims of the movement.

In the July 5 issue of JAMA, Ezekiel Emmanuel and colleagues compiled an overview of euthanasia and assisted suicide in the United States, Europe and Canada. They painted a fairly optimistic picture: euthanasia and assisted suicide are relatively rare, involve mainly patients with cancer, and involve very little abuse. However, one of their main conclusion was that more research was needed on some key issues.

What was clear, however, was that unmanageable pain was not the main issue for people who wanted to die. “Pain is not the main motivation for [physician-assisted suicide]. Typically, less than 33% of patients experience inadequate pain control. The dominant motives are loss of autonomy and dignity and being less able to enjoy life’s activities.”

So the problem faced by supporters of legalization is how to sell euthanasia to the public if pain is no longer a major problem. The Economist, an avowed supporter, this week highlights a possible answer in JAMA Internal Medicine. Four doctors from the University of Pennsylvania investigate a “new metric” which they call “States Worse Than Death”. It found that around half of the 180 patients in their study thought that bowel and bladder incontinence, relying on a respirator, inability to get out of bed, and being confused all the time were states worse than death.

The authors conclude that providing more medical care may actually make matters worse by prolonging a life that has become worse than death. They have essentially recucled the “loss of autonomy and dignity and being less able to enjoy life’s activities”argument, but now  it sounds far closer to the argument about uncontrolled pain. 

Mr Wang recovering from his operation. From China Daily   

If you were searching for evidence that medical paternalism exists in China, search no more. It appears that China, or at least in Shenyang Hunnan Xinqu Hospital, the gentlemen in white coats do know what is best for you. Absolutely.

What demonstrates this beyond dispute is the experience of Mr Wang, a young man who was eagerly awaiting the birth of his first child in a hospital waiting room. Suddenly a doctor beckoned him to follow, surely, thought Mr Wang, to stand at the bedside of his wife after her Caesarean.

Alas, no. He entered an operating room and was told to drop his trousers. This was not what a father-to-be expects on the birth of his child, so, like legions upon legion of patients down through the ages, he asked, “Why?”

And, as he recalls, “'They said: "Just do what we tell you". Like legions of doctors down through the ages.

The trouserless Mr Wang was then placed on the operating table and the doctors proceded to remove his haemorrhoids. After administering anaesthetic, of course.

“I really never knew I had haemorrhoids,” the 29-year-old said. “When I was on the operating table I heard a baby crying and I was very happy, and I wanted to hold it. But I couldn't move because I started to feel pain.”

The hospital has offered 5000 Yuan as compensation (US$750) for the mistake. 

Stories about older women having IVF babies come and go on the front pages of the tabloids. Several 70-year-olds have given birth in India, news which is always greeted with a chorus of astonishment and dismay. How will the woman and her husband be able to care for the child, critics ask. An Australian woman who gave birth at 63 last week was called "selfish" by the head of the Australian Medical Association. 

It's even harder for single mothers. A Spanish woman, Carmela Bousada, held the world record in 2009 for giving birth to twins a week short of her 67th birthday. She told sceptics: “"My mum lived to be 101 and there's no reason I couldn't do the same." Unhappily she died three years later of stomach cancer, leaving her sons orphaned at 2½ years old.

And there are other hazards for the older single mother, as 62-year-old Kathleen Steele, of St Petersburg, Florida, discovered this week. In 2009 she appeared on a reality TV show, "I'm Pregnant and 55 Years Old". She gave birth to a son. After her husband died of cancer in 2011, she used his frozen sperm to have more two babies, a 3-year-old and an infant daughter, whom she was raising by herself.

This week she slipped into a shop to get her cell phone repaired and left her three children in the car. The 13-day-old baby began crying and the 6-year-old beat her to death. The car’s ceiling was spattered with blood. Even hardened police were distressed. 

Ms Steele is jail and will face charges of aggravated manslaughter. Her two children are in foster care.

It turns out that the self-confident woman who was pregnant at 55 must have been pushed to the breaking point by caring for her children alone. The children were running amok; the oldest boy was pathologically aggressive; she had filed for bankruptcy and lost her home; she was being investigated by child protection authorities.

Pinellas County Sheriff Bob Gulatieri told media that he was horrified by the death and by the casual attitude of the doctor who agreed to artificially inseminate Ms Steele. He said that it was troubling “that some supposed medical professional agrees to impregnate a 62-year-old woman with her dead husband's sperm - and she gives birth to a baby that, by all accounts, she's unable to adequately care for. Steele made statements in the last couple days that she was not finished, and apparently there's more frozen sperm and she wants to have another baby boy. Something is seriously messed up with that.”  

Australian bioethicist Rob Sparrow has written extensively on topics ranging from political philosophy and minority rights to the ethics of war, robot ethics and even the ethics of nanotechnology. Yet he is arguably best known for his work in bioethics. While in one sense part of a mainstream bioethics academy, Professor Sparrow often provides a refreshingly unique perspective and challenges establishment opinions in the field. As Richard R. Sharp has noted, “Sparrow’s scholarship exemplifies the value of the intellectual gadfly – even when that work ruffles a few feathers among the bioethical elite.”

In the following interview Professor Sparrow and BioEdge’s Xavier Symons discuss current controversies in bioethics and, in particular, questions surrounding genetic diversity, the elimination of disability, and the so-called new eugenics.  

******

Vulnerability and genetic diversity

Xavier Symons: Recently you've written on the topic of disability and new reproductive technologies. This seems related to the notion of vulnerability as it has been discussed in recent philosophical literature.

Rob Sparrow: There is a debate about vulnerability, which is concerned with power relations –for example, between people doing medical research and their research subjects – and a debate about the sort of vulnerability to contingency that some people want to insist on as being a valuable part of the human condition. I’ve really only written on the second of these topics. 

XS: Let’s focus on the second kind of vulnerability, then. Do you think considerations about the value of vulnerability should play a role in our bioethical policy on reproductive technologies?

RS: Certainly. One, typically philosophical, context in which to think about this is to consider what David Pearce calls the ‘abolitionist project’ – the transhumanist fantasy that we could use biotechnology to eliminate all suffering in all sentient creatures. You might well wonder whether this would be utopian or dystopian. Back in reality, we are arguably medicalising suffering through our accounts of depression. The idea that people have a right to be happy all the time has a certain cultural currency nowadays, such that it can be tempting to conclude that when people aren’t happy it represents a failure of society and/or of medicine. That’s another context in which you might wonder about the value of suffering.

Rob Sparrow

XS: Many people seem to have the intuition that overcoming challenges or adversity is somehow part and parcel of a fulfilled life.

RS: I do think there’s something to this. It’s a powerful intuition that a life of uninterrupted bliss is in some sense shallower, less interesting, than a life that involves overcoming trials, or involves the sorts of human relationships that are predicated on vulnerability. One might think of caring relationships here; for instance, such as love or sympathy. Trust is another relationship that necessarily involves vulnerability. In trusting, we become vulnerable to betrayal and to suffering as a result of betrayal. I’m not sure I would want to live in a world wherein it were impossible to demonstrate trust.

XS: Yes, Martha Nussbaum deals with this idea in The Fragility of Goodness.

RS: Indeed. So there are lots of reasons why we should be suspicious of the idea that we should strive to eliminate all suffering. However, having said this, when it comes to the value of any particular instance of vulnerability or suffering we have to be careful about embracing a kind of fatalism, such that we have no reason to prevent these things. Accounts of the value of suffering in general risk becoming a kind of theodicy wherein we are committed to the claim that ours is the best of possible worlds.

"The idea that people have a right to be happy all the time has a certain cultural currency nowadays"

Moreover, when it comes to the suffering of future people, the idea that we should — on the basis of our intuitions about the value of vulnerability or suffering — chose to ensure that people are vulnerable seems problematic. I explored this idea in an article on imposing genetic diversity. When you really push hard on the idea that one might consciously choose to bring about a world in which there was more vulnerability or lower welfare for the sake of producing the value that supposedly flows from these things it starts to look rather mercenary.

XS: Perhaps we can discuss the relationship between conservation of disability and imposition of disability. Many would have the intuition that there’s nothing wrong with conserving the way things are, and that, indeed, there might even be something good with retaining the existing diversity of human capacities, while still balking at the idea that we should impose disability. 

RS: In heritage conservation you might want to preserve a building that you wouldn't necessarily chose to build now… so it’s clear that at least in some contexts, history does matter. Where I think that argument becomes less plausible is if you are using an argument about conservation to guide policies in relation to reproductive technologies. If we make choices now that will lead to people having less good lives in the future, for the sake of conserving features of the world we live in — such as diversity — that we think are important, I’m inclined to think that this would involve imposing a particular world on future people.

Disability culture

XS: Perhaps this is a good opportunity to discuss the idea of a ‘disability culture’. Some people may think that there is such a thing as ‘disability culture’, and that this culture is valuable and worth preserving. Does ‘disability culture’ count as a reason why we shouldn’t attempt to eliminate disability? 

RS: If you can show that preventing the birth of individuals with particular disabilities would lead to the loss of a distinctive culture then that does seem to establish an ethical issue that can’t be settled straightforwardly by reference to the welfare of individuals. People typically have an intuition that cultures are valuable in their own right. Notice, though, that this intuition concerns the value of a good that can only be sustained by a collective, and may even only be good for a collective.

Now there are different ways in which you might think there is an association between particular forms of physical embodiment or sets of intellectual capacities, which we sometimes identify as disability, and culture.

To my mind the strongest case that can be made for a relationship between disability and a distinctive culture relates to “capital D” Deaf culture. In this case, what looks to most people like an impairment – being hard of hearing – is associated with a language, a signed language. In fact there are any number of unique signed languages sustained by Deaf people in different communities around the world. Thus the various medical technologies that are working to eliminate deafness — most notoriously the cochlear implant — are also leading to language extinction and thus cultural extinction.

"People typically have the intuition that cultures are valuable in their own right"

The idea that we might remove someone from their culture in order to give them more opportunities – which is one of the justifications for cochlear implantation – has a longer history in debates about the value of culture. In the Australian context, it’s tempting to place the ethics of cochlear implantation alongside the history of the “Stolen Generations”, in which indigenous children were stolen from their parents and placed in the homes of white couples. Of course, this policy was mostly motivated by racist and genocidal ideas… but it’s occasionally been defended in terms of providing indigenous children with greater opportunities than they would have had growing up in their own culture. In practice, it was usually at the expense of the welfare of the stolen children, at least in part because forced cultural assimilation usually fails. Even if it were successful though, we might wonder whether such a policy could ever be justified.

However, what’s different about the Deaf case is that deaf children will usually be born to hearing parents, which makes the argument about cultural rights especially tricky and ultimately, I suspect, less convincing… Anyway, with Deaf culture you’ve got disability producing a distinct language so that the argument that it is associated with a distinct culture is incredibly strong.

People do occasionally suggest that there is such a thing as “disability culture”, associated not with any particular disability but rather with the experience of disability in general. I suspect that this claim is more plausible if formulated as a claim about distinctive experiences rather than a distinctive culture. Anyone who is committed to any kind of standpoint epistemology, for instance, should concede that people living with disabilities may have an important contribution to make on many different moral and political questions. Regardless, as someone who, for the most part, is identified as able-bodied, I’m not especially well-placed to rule on this question. What I would say is that if there is an association between disability and a distinct culture or cultures, that doesn’t settle the question of the ethics of prenatal testing…. even if it does complexify it.

Disability, abortion, and a life worth living

XS: One specific bioethical matter related to disability is the increasingly effective detection of Down syndrome via PGD, and the concomitant increase of abortion of children with Down syndrome. Do you think there is something problematic about this?

RS: Philosophers and the medical profession have been way too swift to make judgements about other people’s quality of life and the extent to which particular forms of embodiment are compatible with human flourishing and with making a valuable social contribution. So there is an urgent moral demand on bioethicists to take up the arguments that have been made by disability advocates about the ethics of policies of selective termination, genetic screening, PGD, and so forth. This doesn’t require that you reach the same conclusions, but it does require a serious project of listening and engagement. This is particularly challenging — but also important — because, for all sorts of reasons, the perspectives of people with disabilities, particularly cognitive ones, are not well represented in bioethics, nor are they well represented in the institutions that determine policy regarding these technologies.

XS: So you think there are deeper ethical questions that have been overlooked by the bioethical community?

RS: Yes. I believe that, at the very least, when thinking about the ethics of prenatal testing and selective abortion, we are required to ask some quite traditional philosophical questions, of the sort we were discussing earlier, about what makes a human life go well, the nature of human flourishing, and whether suffering, vulnerability or particularity need always be negatively correlated with flourishing.

"Philosophers and the medical profession have been way too swift to make judgements about other people’s quality of life"

One way of encouraging people working in philosophy and bioethics to take the arguments made by disability critics seriously is to ask them to imagine that people like them were being selectively terminated. In a number of publications, I’ve been exploring an argument wherein I’ve tried to show that the so-called “obligation” of procreative beneficence – the duty to have the best child possible –might require the selective termination of male embryos on the grounds that it is better to be born a woman. What’s been striking about the response to those papers is that all of a sudden the mostly male philosophers writing about human enhancement start channelling the disability community. They say things like ‘it’s not worse to be a man, it’s just different’ or “but there are good things about not being able to get pregnant.” Indeed, they start celebrating the value of diversity! People who have previously been insisting that there’s always an answer to whether it’s better to be hearing or deaf – that’s straight forward, it’s better to be hearing! – begin emphasising instead that there are many ways of flourishing as a human being, many different notions of what “the good” consists in! My hope is that if I can encourage bioethicists to feel the force of those intuitions when they are confronted with the possibility that people like themselves will not exist in the future, they might be willing to look again at arguments made by disability activists and take them more seriously.

A new eugenics?

XS: There has been spirited discussion recently about reproductive ethics and the supposed moral imperative to try to have the healthiest and fittest children possible. Do you think the label ‘the new eugenics’ is a fair way to describe the project of Savulescu and others? 

RS: I would be very surprised if Julian would object to that description. There’s any number of philosophers who have tried to distinguish between the historical eugenics programs that involved atrocious human rights abuses and the philosophical underpinnings of the project of trying to ensure that people are born with better genes. They often conclude that we should countenance a ‘new eugenics’, which would be voluntary, human-rights respecting, and based on good genetics…. as opposed to the old “race science” that was based on bogus scientific claims and endorsed restrictions on the reproductive liberty of couples — not to mention murder!

One of the things I’m grappling with in my work at the moment is how plausible it is to identify — as I have tended to in previous writing — the willingness to regulate decisions around reproduction so as to secure collective goods, at the expense of individual welfare, as one of the morally problematic features of the old eugenics. The existence of collective action problems and the potentially disastrous aggregate consequences of widespread selection in the absence of any restrictions on the uses of technologies of genetic selection seem to require us to put notions of public health and the good of society at the heart of any plausible system of regulation of reproductive technologies. Then I worry that the collective good will once again be used to justify restrictions on the reproductive liberty of individuals.

"I don't think we're as far from the history of the bad old eugenics as many bioethicists would like to think"

If some advocates of the new eugenics are to be believed, future developments in technologies of genetic human enhancement are going to make very large benefits available to both individuals and societies. It seems to me that, should this ever eventuate, it will render it plausible to argue not only that individuals who are not making the socially validated choices are doing the wrong thing , but that they should be incentivised to make the right choice, or even punished for, or prevented from, making the “wrong” choice. Still, today, we occasionally see the re-emergence of bigoted ideas about what constitutes “good genes” and who should be having children….. even of policies of forced sterilization. So I don’t think we’re as far from the history of the bad old eugenics as many bioethicists would like to think.

The other danger with the contemporary philosophical enthusiasm for the new eugenics is that all the talk about the contribution that genes make to a good human life — about some people having “better genes” — may encourage a return to dubious “genetic” accounts of the origins of inequality. Responsible scholars will always emphasise that genes and environment work together and that you can’t simply read off someone’s genetics from their social status. However, there are all sorts of social and political forces at work today that encourage us to think that people who are essentially lucky, who become wealthy as result of a series of fortuitous circumstances that allowed them to succeed where other people with similar ambitions failed, must actually be geniuses… that there must be something in them rather than in the history that led to them being where they are that made them successful.

Then it’s an easy leap to the conclusion that, if this person is a genius — which they must be because they have billions of dollars — it is because of their genes. Perhaps more importantly, the same argument is run at the other end of the social spectrum such that some people will look at others who are in prison or are drug addicted or are socially marginal, and reach for a “genetic” explanation for why that’s the case. Even if new reproductive and/or genetic technologies never realise the potential that advocates of the new eugenics think they might have, the social and political consequences of the contemporary philosophical debate about them are reason to fear that the “new” eugenics cannot be entirely divorced from the shameful history of eugenics in the 20^th century.

Mouse, mouse-rat chimera, rat-mouse chimera and rat     

The National Institutes of Health announced this week that it will probably lift a ban on funding for animal-human chimeras. Since September last year the NIH refused to fund experiments in which human stem cells were added to animal embryos. However, scientists believe that the resulting chimeras will be valuable for investigating human development, disease pathology, and ultimately organ transplantation.

The NIH has asked for public comment on the proposed changes to its guidelines.

The new rules would shorten the period at which human stem cells can be added to animal embryos. It would not be possible to add them during the period when the central nervous system is forming, to avoid creating a chimera with a human, or mostly human brain. Breeding animals which contain human tissue would be banned to prevent the remote possibility of a human embryo growing in an animal womb or the birth of a chimera which is more human than its parents.

Chimera research would also require an extra layer of scrutiny. “It would be an extra set of eyes to make sure we’re not triggering any animal-welfare issues,” says Carrie Wolinetz, NIH associate director for science policy.

After September 4 the NIH will draft its final policy and hopefully lift the funding moratorium by late January.

The NIH realizes that it is important not to alarm the public. “We are not near the island of Dr Moreau, but science moves fast,” NIH ethicist David Resnik said last November at a workshop. “The specter of an intelligent mouse stuck in a laboratory somewhere screaming ‘I want to get out’ would be very troubling to people.”

Although NIH funding will make chimera research easier, it is already happening in the United States anyway. An article in MIT’s Technology Review earlier this year described some of the experiments which were being done with funding from the US Army and from the California Institute of Regenerative Medicine. The ultimate aim is growing organs in pigs for people who need an organ transplant. 

Prayers at the care centre   

Japan’s biggest mass murder since World War II has provoked a debate over the notions of “mercy killing” and eugenics. Satoshi Uematsu, a 26-year-old with a history of mental instability, broke into a home for the disabled in Sagamihara, a city near Tokyo on July 26. He stabbed 19 residents to death and seriously wounded 25 others. He then turned himself into the police. “I did it,” he told police. “It is better that disabled people disappear.” 

In February Uematsu had been committed involuntarily to a psychiatric hospital after writing a letter to the Japanese parliament outlining a plan for killing the disabled. “I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities,” the letter said. The deaths would promote world peace, benefit the global economy and prevent World War III. He wrote that he would kill 470 patients in two facilities during a night shift.

However after short time Uematsu was discharged as psychiatrists believed that he was not dangerous.

On Twitter and in major newspapers the murders were condemned as a hate crime and as a revival of Nazi ideology. “With this, we can also catch a glimpse of the philosophy of eugenics, which sought to eliminate the ‘inferior presence’ of the disabled,” the Tokyo Shimbun said in an editorial. The National Association for People with Intellectual Disabilities issued a statement stressing the unique value of the victims’ lives, no matter how disabled they were:

“The suspect in this incident has made statements to the effect that he denies respect for the lives of disabled people. However, each one of our children, whatever their disability, regard their lives as important and live eagerly. We families care for them, supporting their steps one at a time. Each life that was cruelly taken was irreplaceable. The person who committed this crime must face it squarely and recognize the gravity of his act.”

The advent of the Brazil Olympics has stimulated spirited discussion about human enhancement and the ethics of doping. Commentators around the world have focused on the increasing difficulty of justifying and implementing bans on athletes who use artificial means to enhance their performance. 

Washington Post columnist Sally Jenkins suggested that the bid to prohibit drugs in the Olympics has amounted to nothing but a “failed social experiment”. She suggests that they should be allowed for pragmatic reasons like avoiding bribery and misuse.

“Athletes should be permitted to consider performance enhancement as a matter of personal conscience and moderate it as they choose, with the above-board advice of their doctors and trainers. It would be a cleaner system for all.”

Writing in The Globe and Mail, Brock University Sports academic Hilary Findlay offered a less controversial but still alarming account of the pandemic of doping in Olympics sports:

“Long-term solutions will be difficult to find. Definitive action needs to happen … a blanket ban on athletes would have been a knee-jerk reaction … But that would do nothing to ensure a clean playing field in Rio, or elsewhere, and would irreparably undermine fundamental values of fairness espoused by the anti-doping movement. Its credibility wholly rests upon upholding these values.”

James Madison University philosopher Alan Levinovitz, also writing in the Washington Post, considered the increasing difficulty in trying to settle on a natural standard against which to compare any alterations (such as prosthetic limbs) made to the human body:

“As biotechnology advances, problems with defining “natural” will only become more pronounced. If parents genetically engineer their children to be stronger or faster, will those children be allowed to compete in the Olympics? Or would it violate the “spirit of sport”?” 

Some argue for a ban on doping on the basis of an appeal to nature; such arguments typically meet with fierce criticism.

In an article published online first this week in the Journal of Medical Ethics, University of Munich theologian and bioethicist Christof Breitsameter presents a different argument– he draws on game theory and claims about the behaviour of rational agents. He writes:

“Ceteris paribus, athletes will always prefer a situation that presents no health risk to a situation in which they face a threat to their health. They will therefore consent to a doping ban on the condition that it is ensured that all parties are bound to this rule, so that anyone complying with the rules will not be afraid of losing the competition as a result. For even if we condoned self-harm, it could still be argued plausibly that the individual should not suffer more disadvantages than absolutely necessary for the sake of gaining an advantage over others.”

Breitsameter argues that even minor health risks would not be worth taking for a rational agent:

“Of course, it is possible to plead for a restricted approval of doping measures with acceptable risk. But even taking minor risks would not seem sensible under the condition that all participants without exception adhere to the same conditions when there is the option to renounce the (avoidable) risks.”

Game theory has been applied to the doping issue before, but with a very different conclusion. In 2008 article in the Scientific American, essayist Michael Shermer argued that it would be eminently rational for professional cyclists to dope.

Breitsameter’s argument remains at a level of abstraction and assumes for argument’s sake that doping is (or at least can be) thoroughly regulated. 

Some IVF clinics are run like "like a 19th-century grocery", says Art Caplan   

Cases of mix-ups, losses and genetic defects have given IVF clinics and sperm banks a black eye in the past year in the United States. A recent story in the New York Times was headlined “Sperm Banks Accused of Losing Samples and Lying About Donors”. The Times spoke of “a new wave of lawsuits against sperm banks, highlighting claims of deception and negligence, and adding an array of challenges beyond the longstanding issue of undetected genetic problems”.

Quality control has often been poor in the clinics. “Even in New York, when they inspect, they’re looking at hygienic conditions not record-keeping,” said bioethicist Arthur Caplan, of New York University. “Nobody confirms that you have what you say you have… It’s absurd that we have these materials so valuable that people pay to store them, but we run it like a 19th-century grocery. Cryopreservation has historically operated in a casual laissez-faire environment, where people were just supposed to trust.”

Now the American Society for Reproductive Medicine, the peak IVF body in the US, has issued non-binding ethical guidelines for its members. It states that clinics are ethically obliged to inform people of mistakes “of respect for patient autonomy and in fairness to patients”. Clinics should inform patients as soon as a mistake is discovered. And clinics should also foster “a culture of truth-telling”.

The temptation to avoid informing patients about mistakes must be great, but the ASRM insists that mistakes must be acknowledged as soon as possible:

“Principles of open and honest communication with patients have special significance in reproductive medicine. Fertility treatments are often stressful, and patients may be particularly sensitive to the statements of their health-care providers. In addition, errors in reproductive medicine may affect the couple's ability to have a child. In situations in which errors are particularly serious—where embryos are mistakenly transferred to the wrong patient—the error may lead to the birth of a different child than was intended. Such births can lead to significant emotional turmoil and the burdens of parentage or custody lawsuits, which can adversely affect all involved parties, including the children.”

Don't say we didn't warn you: the latest instalment has a Rotten Tomatoes rating of 48% 

Despite the popularity of superhumans in the X-Men series and growing interest in transhumanism, the American public is wary of even mild forms of human enhancement, according to a survey from the Pew Research Center. 

In the survey people were asked about three scenarios: gene editing to protect babies from disease, chips in the brain to improve people’s ability to think, and synthetic blood which would enhance performance by increasing speed, strength and endurance.

None of these are currently possible. Even so, people were “cautious and often resistant”. Most would be “very” or “somewhat” worried about gene editing (68%), brain chips (69%) and synthetic blood (63%). By a margin of 2 to 1, people would not want to be enhanced themselves and only half would want it for their children.

As an index of how much the public trusts scientists, “At least seven-in-ten adults predict each of these new technologies will become available before they have been fully tested or understood.” Most believe that enhancement technology will increase social differences because only the rich will be able to afford it. A majority also believes that enhanced humans will feel superior to those who do not have them. People with a deep religious commitment and women tend to be more skeptical of enhancement.

The survey also detected skepticism about cosmetic surgery, which is the closest legal enhancement available at the moment.

For example, 61% of Americans say people are too quick to undergo cosmetic procedures to change their appearance in ways that are not really important. Roughly a third (34%) say elective cosmetic surgery is “taking technology too far.” And, overall, 54% of U.S. adults say elective cosmetic surgery leads to both benefits and downsides for society, while 26% express the belief that there are more downsides than benefits, and just 16% say society receives more benefits than downsides from cosmetic surgery.

Unsurprisingly, scientists feel differently. Some believe that if the US Congress continues to ban germline modification – genetic engineering which can be passed on to the next generation – the US will be left behind. “The United States is ceding its leadership in this arena to other nations,” write I. Glenn Cohen and Eli Y. Adashi in an essay in Science.

“We are on the cusp of being able to do [gene editing] safely, and the prospect of a telling a parent that they won’t have access to these therapies is morally untenable,” transhumanist bioethicist James Hughes, the executive director of the Institute for Ethics and Emerging Technologies, told Motherboard. 

The parents of the baby girl 

The birth of an IVF daughter to a 63-year-old Tasmanian woman in Melbourne has exposed a rift in the medical profession about post-menopausal pregnancies. The unnamed woman probably went to an overseas clinic to become pregnant. Her partner is reportedly 78. She is the oldest Australian to have given birth.

The president of the Australian Medical Association, an obstetrician, Dr Michael Gannon, was scathing on Twitter and called for “the mother of all debates” about the issue:

63yo woman has #ivf baby. Greater priorities in #womenshealth. Child starts life in NICU. Anyone thought ahead to its teens? Selfish, wrong.

— AMA President (@amapresident) August 2, 2016

Dr Gannon claimed that giving birth at an advanced age was wrong from many angles:

“As a community, we need to consider the rights of the child, the rights of society, the responsibilities of proper parenting, the health of the parents, the health risks to the child at birth and beyond, and the costs to the health system and the taxpayers that fund it. This must not be narrowly viewed as a women’s rights issue. Nor is it about ageism.”

The birth of a child to a 63-year-old mother was not what the pioneers of IVF had in mind in the late 1970s, he said. “Just because medical science can do something does not mean we have to do it, or should do it.” 

However, the president of the Fertility Society of Australia, Prof Michael Chapman, said that no one should judge the woman.

I think we’re all selfish in having babies and one of the main motives of having them is self-fulfilment and selfishness, so I don’t criticise her at all for that. There is also a lot we don’t know about her. Maybe she comes from a wealthy family, maybe there are other family members able to step in and help to look after the child. I can see many situations that might have driven her to this.”

Dr Andrew Pesce, a former AMA president and obstetrician and gynaecologist, called for an official age limit on pregnancies. "It helps in your counselling of people who are very desperate, who are very vulnerable, who may insist on saying, 'I know you're telling me I have no realistic chance of getting pregnant ... but I still want to do it,'" he told the ABC. "It would help clinicians to say 'I'm sorry even though I feel very sorry for you ... I can't because I'm not allowed to'. And I think that would be a good thing."

A new American documentary claims to provide damning evidence of the Chinese government’s involvement in the force harvesting of organs from prisoners of conscience. Hard to Believe, a documentary produced by director Ken Stone, contains extensive interviews with medical experts, political analysts, government officials and civilians who attest to the alleged persecution of Falun Gong practitioners in China (subsequent to the banning of the movement in 1999). While controversial, the film has received favourable reviews from respected bioethicists, include NYU Art Caplan, who described it as a “An important, timely and deeply disturbing account of one of the great human rights abuses of our time.” The documentary has already premiered in the US, and will be premiering in Australia (Melbourne) on the 18^th of August.

It is tempting to provide an alarmist answer to this question. Yet it is wise to avoid the apocalyptic tone of recent media coverage and first to flag what is not going to change in UK biomedical ethics policy. 

As highlighted by a post on the Christian Medical Fellowship Blogs, the UK will not (or, at least, not yet) be leaving the Council of Europe (CoE) – this entity does not fall under the auspices of the EU. That the UK will remain in the CoE is significant, as this is the umbrella organisation for what is known as the Committee on Bioethics, an influential policy body that seeks to apply principles outlined in the Convention on Human Rights and Medicine to new issues in medical technology and research.

The European Court on Human Rights also falls within the purview of the CoE. Importantly, The ECHR has handed down significant decisions within the area of conscientious objection in healthcare. 

Yet some suggest the Brexit vote may effect disability rights legislation and regulations in the UK. EU directives about equal access and reasonable adjustment in the workplace have been described as a “double lock” on British legislation such as the 1995 Disability Discrimination Act. Disability advocates fear that the Brexit may in the long run lead to a loss of “hard won rights” for disabled people.

There are also significant concerns about the effects of Brexit on UK public health policies that are underpinned by legislation from the European Parliament. Writing in the Journal of Public Health earlier this year, Martin McKee and Michael J. Galsworthy of the London School of Hygiene and Tropical Medicine suggested that Brexit could negatively affect public health policy in areas ranging from environmental issues to anti-smoking policies and research ethics guidelines. 

In its most expansive mode, bioethics deals with the biosphere, our responsibility for all living things. It is a bold writer who tackles this, which helps to explain why the purview of most bioethicists is humankind. Animals usually get short shrift.

However Charles Foster, barrister, travel writer, veterinarian, theologian, Oxford don, father of six and medical ethicist has published a fascinating, if sometimes stomach-turning, account of his attempt to reconnect with the animal world.

In his recent book Being a Beast, he tells how he lived as a badger, a fox, a swift and an otter. “Lived as” means “lived as”. Badger Foster lived underground, ate earthworms, scraped squirrel road kill off the tarmac and ate it with his 8-year-old son (cooked with wood sorrel and wild garlic, mind you). Fox Foster lived in London like urban foxes, scurrying down laneways and eating rancid pizzas.

Otters were his least favourite animal. They are pitiless killing and eating machines, consuming the equivalent of 88 Big Macs a day. A human counterpart would “stay up for a couple of nights, drinking a double espresso every couple of hours, before having a cold bath followed by a huge breakfast of still-twitching sushi and then a nap, and then keep repeating until I die.”

The lesson of the book, which is being praised as both bonkers and brilliant, is that humans need to engage with the natural world. In its own eccentric way, it is a serious and profound book:

“I’m angry at humans who act towards the natural world with a lack of empathy which, if displayed towards other humans, would be seen as frankly psychopathic. We have this ability to engage the natural world on so many more levels than we actually do. I’m incredibly happy being a human being, but I’m much happier having learned the lessons about being human that these other species have taught me.”

Even human beings cannot escape from their wilderness heritage: it is wired into their psyche through evolution. As a Cambridge graduate, he ought to know. Here is what his classmates were told at graduation:

“You’re about to leave Cambridge, gentlemen. Now, it may very well be true that the meek will inherit the earth, but my advice to you is this: Until they show some signs of making a serious bid for that position, trample all over them.”

Now, presumably, the mature Foster regards this as otter bosh. 

As one might expect, media coverage of assisted dying (aka assisted suicide or euthanasia or the right to die or dignity in dying) is skewed towards ringing-the-changes rather than steady-as-she-goes. In late May The Economist, an outspoken supporter, argued that the British Medical Association (BMA) should adopt a position of neutrality at its annual meeting. “[A] survey for The Economist last year showed that seven in ten Britons thought doctors should be allowed to help patients end their lives, subject to safeguards,” it contended.

However, when a proposal to adopt a neutral stance failed by a huge margin, 63% to 37%, on June 21, it was only reported by a few Christian and pro-life blogs.

The Chair of BMA Council Mark Porter said that this had been marked the eighth time in 13 years that the BMA had debated the issue: “nobody can credibly say this issue has been suppressed or obfuscated”.

The Royal College of Physicians, the Royal College of General Practitioners and British Geriatrics Society are all officially opposed to a change in the law along with 82% of members of the Association for Palliative Medicine. 

Australia’s asylum seeker policies have been subject to intense international scrutiny, even in the world of bioethics. A paper published this week in the Journal of Medical Ethics questions whether Australia’s mandatory detention and operational security laws prevent medical professionals from fulfilling their ethical duties.

Specifically, the authors of the paper – Dr John Paul Sanggaran, of the University of New South Wales and Dr Deborah Zion, of Victoria University – argue that the Australian Boarder Force Act 2015 prevents healthcare professionals who are working in detention centres from reporting human rights abuses such as the torture of detainees. Sanggaran and Zion write,

There is a documented history of issues having been raised by medical practitioners working within the system for years without progress let alone resolution…Significantly, the lack of transparency and informally sanctioned breaches of ethical practice are now accompanied by new laws that explicitly prohibit medical and healthcare practitioners from reporting, other than through demonstrably failed internal channels.

Healthcare workers, Sanggaran and Zion argue, are prevented from fulfilling basic ethical obligations to people in detention:

The role of doctors and other healthcare providers in detention is vital to maintaining any semblance of human rights, in particular the right to health, as other systems that uphold this right are absent… [Yet] Bearing witness by healthcare professionals presents a ‘dual loyalty’ conflict, whereby such persons are asked to subordinate the patient’s interests to the state or to their employer, thereby violating his or her human rights. The healthcare provider therefore finds him or herself in potential breach of a contractual obligation to remain silent.

The suggestion among asylum seeker advocates like the authors of this paper is that the Australian government should ratify the UN’s Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT). Part of this would involve the establishment of a National Preventative Mechanism (NPM) – a system of regular visits and reporting by independent bodies. NPM assessments, according to Sanggaran and Zion, “inform legislation and intervention, as well as act as deterrents in their own right. The transparency this provides should in and of itself act as a deterrent to human rights abuses.” 

The motives for commercial surrogacy may seem relatively straightforward: woman does difficult and risky job; client hands over cash. But motivating women who are not closely related to a client couple for altruistic surrogacy seems more challenging.

Is a Canadian service called Sacred Surrogacy the way of the future in countries where commercial surrogacy is banned? Leia Swanberg, the CEO of Canadian Fertility Consulting, has created a program which draws upon shamanistic rites and fertility goddess worship to motivate her surrogates. Her four-week on-line course guides participants through their “surrogate journey in a sacred and beautiful way”. It includes sacred crystal essence, “crystal water to raise your surrogacy pregnancy vibration”, ayurvedic recipes, almond milk & honey ceremonial bath,” understanding your sacred milk” and fear release.

“Sacred surrogacy” offers quite a different way of looking at gestation. Rather than a commercial transaction, it is a participation in a sisterhood of fecund women:

A Surrogate is a woman who shares of herself by giving the ultimate gift of parenthood to another. It is a process in which you will carry a baby for a single, couple, gay, or straight family. You will be blessed as you join a sisterhood of women who will share in this beautiful journey with you.

Donors also share in the journey:

“Make no mistake about it, you are a heroine about to change a family’s life forever and that act is a reverent one, and should be noted as such. We have created a very special heartwarming mini program for you as you begin this journey, and we are honored to be able to offer you this acknowledgement for your gift of service.”

A new UK Parliamentary Inquiry into conscientious objection was launched this month, focusing specifically on the participation of healthcare professionals in abortion. 

The Parliamentary Inquiry into Freedom of Conscience in Abortion Provision, commissioned by Tory MP and outspoken abortion opponent Fiona Bruce, will consider the scope and import of section 4 of the UK Abortion Act (1967).  The so-called “conscience clause” of the act requires that “no person shall be under any duty, whether by contract or by any statutory or other legal requirement, to participate in any treatment authorised by this Act to which he has a conscientious objection”.

A call for ‘written evidence’ has been published on the Inquiry’s website, with submissions by July 16. The Inquiry committee is particularly interested in submissions regarding “good and bad practice in the use of the Conscience Clause”.

Christian Medical Fellowship Chief Executive Peter Saunders welcomed the announcement of the Inquiry and encouraged healthcare professionals to submit evidence:

This new consultation is timely. It provides a great opportunity for anyone with strong feelings on this issue, and especially those with experience of how the conscience clause works in practice, to provide input which may help to shape future law and regulations. It’s an opportunity well worth taking – especially for doctors and nurses.

 

 

The American tabloid media was abuzz this week with news that a New York mathematics lecturer had fathered 22 children through informal sperm donation.

Ari Nagel, a 42-year-old Kingsborough Community College academic, proudly told the New York Post about his exploits – including details of how he donates sperm in public toilets to desperate women who contact him over the internet.

Nagel said he finds satisfaction in helping families realise their dream of having children. “I get a lot of joy from seeing so many happy families that I was able to play a role in creating”, he told reporters.

Nagel says he sometimes fathers children by donating at fertility clinics, though others are conceived through informal sperm donation or intercourse.

Subsequent to his interview with the New York Post, papers revealed that Nagel himself is married with three kids. When questioned by the media Nagel’s wife said she was “livid”. Nagel was sued successful for child support by the mothers of the first five children he fathered.

In an interview with Slate, Gregory Zapantis, medical director of New York Reproductive Wellness, a fertility clinic, said that Nagel’s actions raise a host of medical, ethical and legal concerns:

“From a professional standpoint, I was appalled,” Zapantis said of his first reaction to the Post story. “Something like donor sperm is a complex process that requires considering social issues, ethical issues, and legal issues, and it seems like all of those things have not really been thought through carefully. In fact, it was approached in a very blasé and egotistical manner.”

Driverless cars pose a quandary when it comes to safety. These autonomous vehicles are programmed with a set of safety rules, and it is not hard to construct a scenario in which those rules come into conflict with each other. Suppose a driverless car must either hit a pedestrian or swerve in such a way that it crashes and harms its passengers. What should it be programmed to do?

An article in Science this week shows that the give contradictory responses to scenarios like these. Researchers found that people generally take a utilitarian approach to safety ethics: They would prefer autonomous vehicles to minimize casualties in situations of extreme danger. That would mean, say, having a car with one rider swerve off the road and crash to avoid a crowd of 10 pedestrians. At the same time, they would be much less likely to use a vehicle programmed that way.

Essentially, people want driverless cars that are as pedestrian-friendly as possible -- except for the vehicles they would be riding in. "Most people want to live in in a world where cars will minimize casualties," says Iyad Rahwan, an associate professor in the MIT Media Lab. "But everybody want their own car to protect them at all costs."

People were strongly opposed to the idea of the government regulating driverless cars to ensure they would be programmed with utilitarian principles. They were only one-third as likely to purchase a vehicle regulated this way, as opposed to an unregulated vehicle, which could presumably be programmed in any fashion.

"This is a challenge that should be on the mind of carmakers and regulators alike," the researchers said. Moreover, if autonomous vehicles actually turned out to be safer than regular cars, unease over the dilemmas of regulation "may paradoxically increase casualties by postponing the adoption of a safer technology."

The result is what the researchers call a "social dilemma," in which people could end up making conditions less safe for everyone by acting in their own self-interest: "For the time being, there seems to be no easy way to design algorithms that would reconcile moral values and personal self-interest."

Somebody must be telling porkies about the state of ethics in China’s medical profession.

In Nature this week the head of the Guangzhou Institutes of Biomedicine and Health Duanqing Pei and former Nature journalist Douglas Sipp claim that China’s reputation as a “wild east” of stem cell therapies is undeserved. They paint a picture of a disciplined and ethical scientific fraternity.

“ … all too often the intimation is that Chinese scientists are free to do anything and are a step away from making designer babies. What is more, commentators, both in China and outside it, often assume that scientists and others in China have little concern about the fate of early human embryos. Even a cursory review of China's existing regulations, as well as its research and social norms, shows that this picture is fundamentally inaccurate.”

The authors say that China’s regulations are hidden behind a veil of ignorance due to the language barrier. But researchers operate with clear guidelines and firm regulation. “[I]n relation to the use of human embryos in research, China's approach has arguably been more effective and enabling than the legal patchwork seen in much of the world.”

On the other hand, doughty critics of China’s organ transplant industry accuse the government of "a new form of genocide that is using the most respected members of socieity to implement it". The International Coalition to End Organ Pillaging in China has released a 798-page report which claims that between 60,000 and 100,000 organs are being transplanted every year – far more than the official figures. What is the source? Falun Gong activists and their supporters in the West say that it is political prisoners and prisoners of conscience: Falun Gong members, Tibetans, Uighur separatists and house Christians.  

“What we’re trying to do is get the government, the party state in Beijing, to stop killing their own people for their organs,” David Kilgour, a human-rights activist and former Canadian MP, told the Toronto Globe and Mail. “An industrial-scale crime against humanity is going on in China.”

The authors of the report, who have written extensively on China’s organ transplants in the past, are David Kilgour, David Matas and Ethan Gutmann.

Their claims face an obvious problem: they cannot be proved. Nearly all the evidence is based on inferences from statistics gathered from transplant centres. The Chinese government has angrily denied all of the allegations. It states that from 2015 the government stopped using death row prisoners as sources for organ donation and that organ donation is completely voluntary.

And Jeremy Chapman, an Australian transplant surgeon and former president of the Transplantation Society, describes the estimates in this new report “pure imagination piled upon political intent.” He says that the figures have been fabricated by the Falun Gong.

Here’s a video about the report

Wesley J. Smith is one of America's leading commentators on bioethical issues, especially assisted suicide and euthanasia. His columns are published in the National Review and he is the author of 14 books. BioEdge interviewed him about his latest, Culture of Death: The Age of “Do Harm” Medicine.

*****

BioEdge: This is a thoroughly revised edition of a book you published 16 years ago. In your view, is there less respect for life in American medical culture now? Are there any bright spots?

Wesley J. Smith: There is less respect for human equality and the sanctity of life in healthcare generally, I fear, and not only in the U.S. Indeed, I changed the subtitle of the book to “The Age of ‘Do Harm’ Medicine” because it now grapples with developments outside the United States as well as in my own country. We are all connected, so that what happens in Canada impacts Australia, what happens in the USA can have a pull on South Africa.

I have observed in the 15 years since the first edition of Culture of Death, that throughout the developed world and the West we see a terrible and increasing disrespect for the intrinsic value of the most weak and vulnerable among us. Euthanasia has spread like a stain and grown increasingly toxic. For example, in Belgium medicalized killing is now coupled with organ harvesting—including of the mentally ill. Health care rationing, which is blatant and invidious medical discrimination, is a growing threat. Advocacy continues to discard the dead donor rule in organ transplant medicine, even proposals for the live-harvesting of patients with profound cognitive disabilities.

If there is a “bright spot,” it is to be found among the medical professionals—doctors, nurses, pharmacists, physicians assistants, etc.—who continue to resist these utilitarian bioethical agendas and work in the trenches of clinical medicine with an ongoing commitment to the wellbeing and equal value of all patients.

BioEdge: A serious problem in dealing with issues like stem cell research, surrogacy, futile care and so on is that people (including politicians) just don’t seem to be interested – at least until it touches them. How can we get voters and policy-makers to think about these issues more deeply?

Smith: It’s a difficult problem. The popular media is increasingly tabloid in its approach to reporting. It is the rare story that informs the general population about the threatening and radical ideas emanating from the academy, in the professional journals, and from among the leaders of the bioethical/medical establishments.

One of the purposes of the book is to help readers be forewarned of the potential threat they or their loved ones could face in a clinical setting—note, I don’t say will, but could—to enable them to mount a defense should an attempt be made to push a vulnerable patient out of the lifeboat.

Ironically, the media can be very helpful in such circumstances, because while the journalistic sector does a terrible job generally of reporting about bioethical issues—and are very boosting of assisted suicide—they often cast klieg lights on individual cases of medical oppression against particular patients, which can personalize the issue in such a way as to gain the attention and sympathy of the general public.

The great disinfectant of “light” can be very powerful at such times. Indeed, I am convinced this is why organ transplant medicine remains a generally moral and ethical enterprise. It is also the greatest defense against medical futility. Because the people generally reject such bad ideas and that acts as a popular bulwark against utilitarian incursions.

BioEdge: You have spent decades writing and debating about life issues. Amongst the hundreds of bioethicists you have read and interviewed, who represents represent the best and worst?   

Smith: There are several bioethicists whom I believe offer a splendid way forward in thinking about the complex issues with which bioethics grapples. First and foremost is the late Paul Ramsey. His concept of the “patient as a person,” was a crucial insight, indeed one that sparked one of the truly positive developments in bioethics, e.g., the right to refuse unwanted medical interventions. The problem we see in bioethics today is that many in the field want to treat some patients as non-persons.

I think Leon Kass brings a powerful intellectual advocacy for applying and analyzing bioethical issues through the prism of intrinsic human dignity, which was why his appointment by President George W. Bush to head the President’s Council on Bioethics met with so much criticism within the bioethics movement.

Dame Cecily Saunders, the great medical humanitarian who conceived the modern hospice concept is a great hero of mine. I was honored to interview her at St Christopher’s Hospice for the first edition of the book, and that material remains in this edition.

There are so many others worthy of mention. My friends William Hurlbut of Stanford quickly comes to mind, Jennifer Lahl of the Center for Bioethics and Culture, with whom I have worked closely, Richard Doerflinger, who helped me tremendously when I first became interested in the field, and my mentor in opposing assisted suicide, Rita Marker, head of the Patients Rights Council.

I hope it won’t hurt his reputation in the field, but I am fond of Art Caplan. We have crossed swords on more than one occasion and I often disagree with him. But he is very good on organ transplant issues. We co-authored a piece in USA Today calling for important reforms of hospice. I find him more open to contrary opinions than most, and willing to see the dangers in the policies he supports.

I disagree fundamentally with Thaddeus Mason Pope about everything, but respect his candor—he doesn’t sugarcoat the hemlock—and deeply appreciate the work he does in archiving various court cases involving bioethics around the world.

In terms of the “worst,” there are so many (he said with a chuckle)! Joseph Fletcher poisoned the field, in my view. Very toxic ideas, backed by magnificent persuasive writing skills. Peter Singer, whom I call “son of Fletcher,” popularized what I “personhood theory” in bioethics which devalues the intrinsic value of human life so invidiously. I am not a fan of Julian Savulescu, to say the least.

Sadly, I think one of the most influential, if crude, bioethical influences on society was Jack Kevorkian whose odious ideas of using euthanasia for utilitarian purposes and his more death-on-demand approach to assisted suicide have taken hold in places like Belgium and the Netherlands, and soon I fear, Canada. 

BioEdge: You describe bioethics as a kind of religion. What is the creed of this new faith?   

Smith: It is more an orthodoxy, I think. Unless a “bioethicist” has a modifier in front of her name, such as “conservative” or “Catholic,” most are very liberal politically, activist culture warriors, and utilitarian in their approach, either explicitly or in outcomes. The movement seems increasingly disdainful of religious belief as well. I think the most remarkable aspect of all of this is that the values of mainstream bioethics do not comport with the views of most people. And yet we are supposed to follow their “expert” lead in establishing crucial public policies and medical ethics. I think not.

BioEdge: Let’s peer into the future. What are the battles you are preparing for, the big issues?    

Smith: Assisted suicide and euthanasia are going to continue to be bioethical hot potatoes. Medical futility. Protecting medical conscience rights for health care professionals who wish to adhere to Hippocratic values is going to be huge internationally. I mean, if we are not careful, in 20 years one may not be able to find a doctor who would not be willing to kill you under some circumstances, which I find a very frightening prospect.

I think health care rationing will also become an increasing hot button issue in the US, particularly if Hillary Clinton is elected and the Affordable Care Act’s centralized control over American medicine becomes more centralized. And dealing with the ethical implications of CRISPR is going to be a daunting prospect.

BioEdge: In the new edition, you have added a chapter on transhumanism. Aren’t they just a bunch of harmless Trekkies?    

Smith: More akin to Star Trek’s tribbles, individually they are harmless, but if allowed to proliferate, could be deadly.

Like eugenics and bioethics before it, transhumanism is a top-down movement being driven from among the intelligentsia. I am not so much concerned about the development of transhumanist technologies or an actual “seizing control of human evolution”—as if we have the wisdom for such a task. But I think the values of the movement are explicitly anti-human exceptionalism, eugenic in outlook, would use genetic engineering to predesign offspring in the image and likeness of transhumanist goals, which would inhibit the individual freedom of designed progeny through the naked power of genetics.

On a more practical plain, transhumanist lobbying could divert resources away from practical concerns and toward quixotic or narcissistic quests. What is interesting is how transhumanism is becoming a materialistic religion, complete with prophets, eschatology, and a belief in eternal life in the here and now, rather than the great beyond.

How did Dylan put it? “You gotta serve somebody.” For transhumanists, that “somebody” is technology and the yearned for “singularity.” More like spitting into the howling winds of nihilism in my book.

BioEdge: I was pretty touched by your own experience with suicide, disability and care for the elderly. How have these experiences shaped your views?    

Smith: I got into this mess after a friend committed suicide under the influence of Hemlock Society literature. She killed herself on her 76th birthday, and I saw first-hand how the insidious Hemlock message convinced her that suicide was empowering.

I am currently taking care of my 98-year-old mother in my home, with serious Alzheimer’s. I have seen at very close quarters how devastating that disease is—it’s not just memory loss—and how easy it would be to manipulate her into a hastened exit. Coercion happens behind closed doors, which no “guidelines” can protect against.

I have been impressed with the importance of treating the dying as equals and “us” by my training as a hospice volunteer. The courage and fortitude of families I have observed caring for their dying loved ones regardless of the emotional cost touched me at a very fundamental place. The disability rights community has revealed, I think the power and dignity of resisting the dismissive and discriminatory attitudes too commonly seen in the medical context, which perceives the lives of people with disabilities are less worthy of total care than those of other people.

I especially appreciate their insistence that nobody should have to “earn” their moral value by possessing “characteristics” that those with the power to decide determine provide greater importance.

BioEdge: You can’t escape without a question about the US presidential election. Which of the presumptive nominees is more likely to wind back the “culture of death”?  

Smith: None of the above, I’m afraid. If Hillary Clinton becomes president she will accelerate current trends with great gusto, not only in the USA but internationally. I don’t think Donald Trump has thought—or much cares about—bioethical issues, and I am under no illusion that he will grapple with bioethics in any fundamental manner. However the election turns out, for issues I care most about, winter is coming. It’s just a matter of how cold that winter will be and how well we can insulate ourselves against the chill.

Wesley J. Smith is a lawyer and author who lives in San Francisco. He is the author of 14 books. The most recent is Culture of Death: The Age of "Do Harm" Medicine

Despite Hilary Clinton’s recent claims that Donald Trump is temperamentally unsuited to be president and her suggestion that he may be unhinged – clinicians have steered clear of volunteering their professional opinion in the public forum. There is a reason for this.

According to an American Psychiatric Association regulation known informally as The Goldwater Rule, psychiatrists are not allowed to volunteer their opinion on the mental health of a public figure without having had a private consultation with the individual, and, what’s more, received their authorization to make a public statement. There is provision, however, for psychiatrists to comment on more general issues of mental health (and this often happens). A very similar rule applies to psychologists.

The advantage of this is, according to Susan H. McDaniel, president of the American Psychological Association, that psychiatrists and psychologists don’t give the impression of having “a professional relationship … with people in the public eye”.  

One disadvantage is that voters can only access amateur psycho-babble. Here’s a recent Freudian account of Trump from New York Review of Books contributor Elizabeth Drew:

“Trump just doesn’t appear to have become a fully-formed adult. He is unable to deal in nuance or seem to understand how much of life, and certainly governing, involves compromise. He wants his way and when he doesn’t get it the result is a temper tantrum of some sort. The Freudians would say that Trump is all id, the id that’s never been brought to heel.”

A notable exception to the rule is Northwestern University psychology professor Dan P. Adams. Adams has in recent years written a number of articles (and even a book) on the temperaments of politicians. This month he published a lengthy and detailed psychological portrait of Trump in The Atlantic, arguing that with his “well documented life history” one can construct “develop a dispassionate and analytical perspective… drawing upon some of the most important ideas and research findings in psychological science today.”

Adams had this to say about Trump:

“In sum, Donald Trump’s basic personality traits suggest a presidency that could be highly combustible. One possible yield is an energetic, activist president who has a less than cordial relationship with the truth. He could be a daring and ruthlessly aggressive decision maker who desperately desires to create the strongest, tallest, shiniest, and most awesome result—and who never thinks twice about the collateral damage he will leave behind. Tough. Bellicose. Threatening. Explosive.”

But do you need a psychology degree to write that? 

Julianna Snow and her family   

Julianna Snow, a terminally ill five-year-old girl who captured the worldwide attention with the CNN program Heaven Over Hospital, has died in her family home in Portland, Oregon.

Snow suffered from a common inherited neurodegenerative condition called Charcot-Marie-Tooth Disease – a condition that damages the nerves affecting certain muscles. In most cases, the effects of the disease are confined to the arm and leg muscles, but in Julianna’s case it affected muscles needed for chewing, swallowing and even breathing.

After undergoing painful medical, Julianna expressed to her parents a desire to forgo treatment even if it meant her death. “She made it clear that she doesn’t want to go through the hospital again,” her mother Michelle explained in a CNN documentary. “So we had to let go of that plan because it was selfish.”

Snow’s case received attention from bioethicists who questioned the girl’s capacity to make end-of-life decisions.

New York University bioethics professor Arthur Caplan told CNN, “This doesn’t sit well with me. It makes me nervous. I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there’s zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn’t really develop until around age 9 or 10.”

Others disagreed.

“To say her experience is irrelevant doesn’t make any sense,” Chris Feudtner, director of the Department of Medical Ethics at the Children’s Hospital of Philadelphia said in response. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”

Snow’s parents clarified in a later interview that they were not allowing her to be the sole decision-maker, but rather that they thought it fitting to give her wishes significance in their own decision-making:

“I want to make it clear these are not Julianna’s decisions or choices,” Moon told People. “They are Steve’s and my decisions, but we look to Julianna to guide us.”

Writing in a blog post on Tuesday, Snow’s parents said that Julianna had died peacefully in their family home:

“She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world …. Today, she is free. Our sweet Julianna is finally free.” 

from Scientific American / Getty Images    

If we welcome transgender women, are transgender mothers a big deal? Although surgeons are still mastering the technique of transplanting wombs, patients are already asking when this will become possible.

At the moment, the only team which has succeeded in transplanting a uterus into a woman who later gave birth is in Sweden. Dr Mats Brännström developed the operation to help women who had been born without a uterus or who had to have hysterectomies. But elsewhere in Europe and in the US doctors are attempting the daunting surgery and it has been widely publicized. Scientific American spoke to several doctors who said that a handful of their transwomen patients were interested, even though it is still far from successful.

“A lot of this work [in women] is intended to go down that road but no one is talking about that,” Mark Sauer, a professor of obstetrics and gynecology at Columbia University, told the magazine. .

The operation is far more complex than most people imagine. First, the aspiring transwoman needs to create IVF embryos and store them. Then there is castration surgery and high doses of hormones. Surgery would be needed to create a “neo-vagina”. Anti-rejection drugs are needed.

There are other issues as well: the cost is very high and the operation could last for 10 or 11 hours. Would it be ethical for a doctor to allow a patient to risk his life in experimental surgery when there are safer alternatives for having children like adoption?

The one bright side is that uteruses will be available, since people who transition from female to male may have their wombs removed. Some have already asked doctors whether they could donate them.

The bottom line, say most doctors, is that men won’t be having babies any time soon. “I respect reproduction and I don’t think we will ever see this in my lifetime in a transgender woman,” says Marci Bowers, a gynecological surgeon in California. “That’s what I tell my patients.”

In the wake of the Orlando massacre, the American Medical Association has labelled gun violence a “public health crisis” and called on Congress to fund research into gun related crime.

At the Association’s Annual Meeting this week, delegates passed a motion that called for “a comprehensive public health response and solution” to gun crime. Additionally, the AMA resolved to actively lobby Congress to overturn legislation that for 20 years has prohibited the Centers for Disease Control and Prevention (CDC) from researching gun violence.

“With approximately 30,000 men, women and children dying each year at the barrel of a gun in elementary schools, movie theaters, workplaces, houses of worship and on live television, the United States faces a public health crisis of gun violence," said AMA President Steven J. Stack, M.D..

The AMA has adopted strong positions on gun control and licensing since the late 1980s.

Republicans in Congress have expressed reservations about changing the existing policy on gun crime research. 

Another Chinese scientist is stretching medical ethics to the breaking point. According to the New York Times, Dr. Ren Xiaoping of Harbin Medical University, is planning to do a body transplant. Several patients have already volunteered for the daring experiment, which involves attaching the head of a live person to the body of a cadaver.

At the moment the procedure seems impossible, as it seems almost impossible to reconnect the nerves in the spinal column.

But Dr Ren is eager to try. “I’ve been practicing medicine in China and overseas for more than 30 years,” he told the Times. “I’ve done the most complicated operations. But compared to this one, there’s no comparison … Whether it’s ethical or not, this is a person’s life. There is nothing higher than a life, and that’s the core of ethics.”

Leading medical experts, even in China, have condemned the plan as reckless and unethical. “The Chinese system is not transparent in any way,” according to Arthur L. Caplan, a medical ethicist at New York University. “I do not trust Chinese bioethical deliberation or policy. Add healthy doses of politics, national pride and entrepreneurship, and it is tough to know what is going on.”

And a medical ethicist at Peking University, Cong Yali, said in dismay: “I don’t want to see China’s scholars, transplant doctors and scientists deepening the impression that people have of us internationally, that when Chinese people do things they have no bottom line — that anything goes.”

Chinese IVF centres are offering better and bigger rewards as they are failing to recruit enough sperm donors. According to the New York Times, men between 20 and 45 are being offered as much as US$1000 and deluxe iPhones for their contributions.

After decades of a one-child policy, China faces a demographic crisis, with an ageing population and a contracting workforce. Couples are now legally able to have a second child, but many of them have fertility problems. Ironically, it seems, China does not have enough people. The Times observes that clinics are trying all sorts of strategies:  

Some sperm banks have tried to appeal to feelings of patriotism, as China grapples with an aging population and a diminishing work force. “Show your compassion,” an article on a state-run news site urged men this year. “Help mitigate the country’s aging problem.”

Appeals to civic pride and altruism have not helped either:

Recent ads have tried to counter those deep-seated attitudes. “Donating sperm and donating blood are the same thing,” said one message from a Beijing sperm bank. “It’s all about giving back to society.”

There are many reasons for the shortage, according to a 2011 study in a Chinese journal. Culturally, men are reluctant because they fear losing their virility. Medically, nearly half of donor applicants are disqualified because they have a sexually-transmitted disease. Furthermore, China limits the number of pregnancies for each donor to 5. In the US, the recommended limit is 25 and in the UK 10. Therefore, more donors are needed than in Western countries in proportion to the population. 

Pope Francis has made a stinging, if familiar, attack on the bioethics of a consumer society in an address in Rome. He decried the tendency to search for the perfect body and to warehouse the disabled out of sight to avoid offending the sensibilities of the “privileged few”.  

In an age when care for one’s body has become an obsession and a big business, anything imperfect has to be hidden away, since it threatens the happiness and serenity of the privileged few and endangers the dominant model.

Such persons should best be kept apart, in some “enclosure” – even a gilded one – or in “islands” of pietism or social welfare, so that they do not hold back the pace of a false well-being. In some cases, we are even told that it is better to eliminate them as soon as possible, because they become an unacceptable economic burden in time of crisis.

Yet what an illusion it is when people today shut their eyes in the face of sickness and disability! They fail to understand the real meaning of life, which also has to do with accepting suffering and limitations. 

The world does not become better because only apparently “perfect” people live there – I say “perfect” rather than “false” – but when human solidarity, mutual acceptance and respect increase. 

Dr Henry Knowles Beecher   

A famous article in an issue of the 1966 New England Journal of Medicine was the trigger for the construction of contemporary medical ethics. The author, Professor Henry K. Beecher, an anesthetist at Harvard Medical School, declared that many American researchers were behaving unethically in their research. They were, he alleged, harming subjects and performing experiments without informed consent or even informing them that they were being used as guinea pigs. The article incensed doctors who felt that he was exaggerating, but it led to the establishment of institutional review board system which characterizes modern bioethics.

However, the doctor who became the first Henry Knowles Beecher Professor of Anesthesia at Harvard Medical School, James P. Rathmell,  has reviewed Beecher’s career and discovered some surprising inconsistencies in his life. Although he was an outstanding doctor, he was “a little bit of a hypocrite”, says Dr Rathmell.

During the 1950s, he worked with the CIA on mind control, brainwashing and truth serums. He had a particular interest in LSD, which was legal at the time. But he never appears to have been troubled by scruples about informed consent, even though he was quite familiar with prisoner experiments with mescaline, another psychedelic drug, by Nazi doctors at Dachau. As late as 1959 he opposed the application of the Nuremburg Code to clinical research in the United States.

But LSD also led to the deaths of doctors, a fact which could have helped to change his mind. Bioethicist Jonathan Moreno has observed:

What was the source of Beecher’s strong commitment to the ethics of human research? One element was his strong Christian religious commitment. Another was likely his own army-sponsored research in the early 1950s, in which he directed projects that exposed healthy subjects to hallucinogens without their consent. … Thus it was that research sponsored by the national security state inspired one of its own investigators to take on the task of reforming the system of human experimentation.

By 1966 his thinking had changed. He was far more attentive to the need for informed consent. However, he would have been dismayed by the institutional review board system. He always stressed that the strongest safeguard for ethical behavior was a “responsible investigator”. “Beecher would have despised this bureaucratic approach to improving research ethics,” comments Dr Rathmell.  

Was a Queen’s birthday knighthood part of a publicity campaign?

Every year Queen Elizabeth doles out titles to her subjects in the Birthday Honours List. It’s always a moment of congratulation and controversy (and envy) as some of them become “Sirs” and “Dames”. This year the leading figure for congratulations is singer Rod Stewart, now Sir Roderick.

Amongst the controversies is Professor Doug Turnbull, now Sir Douglass, a director of the Wellcome Trust Centre for Mitochondrial Research. The gong came very quickly after some unwelcome publicity for the three-parent embryo solution to mitochondrial disease. Although Wellcome spun Professor Sir Douglass’s recent Nature paper as a vindication of the procedure’s safety, some scientists expressed serious doubts.

From California, stem cell scientist Paul Knoepfler wrote:

For many of us in the broader scientific community the intensity of the hype surrounding this paper and the misleading narrative about safety was concerning. Why was there such a coordinated effort to spin this paper as good news?

On Friday only two days after the publication of this new paper, the BBC reported that Turnbull received a knighthood. Could this be part of the answer for the hype fest? What’s the scoop here? In reporting the news on the knighthood the BBC used the same meme noting incorrectly that the research by Turnbull and the others on the team had proven safety: “…recent study results showed the technique was safe.” The inaccurate text was bolded in the BBC article on the knighthood.

Although Dr Knoepfler acknowledged that Professor Sir Douglass was a distinguished scientist who probably deserved a knighthood, he wondered whether it was part of a publicity campaign:

Was the timing of the Nature paper’s publication coordinated with the knighthood announcement? In other words, did the editors of the UK-based Nature follow a certain timeline created by the UK government? It’s interesting that Nature itself as best I could tell did not do a news story on this new paper, which is unusual. Outside the UK this paper was not covered much and I did not see the same “feel good” label attached to it in the press that did pop up.

What was the motivation for the hype? What impact does this kind of playing politics have on science? Does it encourage the wider life sciences community to engage in hype as well?

Since 2005 about 40 people in Belgium and the Netherlands have successfully combined euthanasia with organ donation, according to an article in the Journal of Medical Ethics by ethicists and transplant specialists. The doctors are so enthusiastic about the procedure that they have proposed legal changes which will speed up the procedure and maximize the number of donations. Although the numbers are still low, the idea is becoming more popular in both countries, according to the authors.

(Not everyone – in fact, only a small proportion – of people who request euthanasia are potential organ donors. Most requests come from patients with cancer, which makes them unsuitable donors. Most of the Belgians who have already participated in the programme appear to have suffered from strokes or multiple sclerosis.)

However there are some legal and ethical wrinkles to be ironed out to make the transition from euthanasia to organ donation seamless.

Some regulations and laws are supposed to be safeguards, but they slow the procedure down. For example, in the Netherlands, euthanasia is not regarded as a natural death and so permission must be sought from the public prosecutor to dispose of the body. In Belgium (where euthanasia is regarded as “natural”), three doctors need to sign off on the procedure. These laws are not absolutely necessary.

On the ethical side (assuming that euthanasia is perfectly ethical), relatives are supposed to be able to participate in the patient’s death. But if he or she wished to donate organs, they will have to bid farewell in a cold hospital setting. However, experience in Belgium shows that neither relatives nor patients mind this.

Another consideration is whether informing euthanasia patients about organ donation puts pressure on them to agree. The authors believe that it doesn’t, provided that it is done tactfully. According to the principles of the Hippocratic Oath, doctors may even have an obligation to inform patients because they will be saving lives of organ recipients. They also point out that “The patient could be very relieved discovering the existence of this option and receiving the possibility to give meaning to his or her own suffering, by potentially relieving the suffering of others.”

Until now, transplant protocols have specified a strict separation between organ donation and euthanasia. However, if the patient is keen, this is not necessary. “As long as all due diligence requirements are fulfilled, it should not be an obstacle if euthanasia and donation are not fully separated,” the authors argue.

Finally, the dead donor rule is frustratingly inconvenient for organ donor euthanasia. Since the patient has chosen to die anyway, why shouldn’t it be possible, to have “a ‘heart-beating organ donation euthanasia’ where a patient is sedated, after which his organs are being removed,causing death”?

The authors conclude:

“Combining euthanasia and organ donation in a so-called ‘donation after circulatory death’ procedure seems feasible on legal, ethical or medical grounds, and is increasingly gaining social acceptance in both Belgium and the Netherlands. Since current legislation does not specifically focus on the—when drafted unpractised—combination, future redrafting may be necessary in perspective of the contemporary developments regarding occurrence of such combined procedures.”

Along with unbearable physical pain, mental suffering, and dementia, a new reason for seeking euthanasia in Belgium has emerged in the media: paedophilia.

The BBC’s Victoria Derbyshire program interviewed a 39-year-old man who has requested a lethal injection because he has intense feelings of attraction to adolescents and young men.

Sébastien (a pseudonym) says that he has been through 17 years of therapy and medication and has come to the end of his tether. He told the BBC that he came from dysfunctional family background, with a strict Catholic upbringing and a mother who had dementia. His father is estranged from the family.

"I was extremely lonely, extremely withdrawn, very inhibited physically - scared to go out, scared of being seen, all the time scared, hugely shy. And growing up, I met a boy and I fell crazy in love. We were both 15. And it was just unbearable for me, you know? I didn't want to be gay."

The interviewer never manages to ask Sébastien whether his torment is due to the fact that he is attracted to minors or to men.  

In any case, he cannot accept that he might be a homosexual, that he is attracted to people he should not be attracted to. But he has always had morbid thoughts about death, as well. When he discovered that euthanasia was available for psychiatric issues, he applied.

However, he told the BBC reporter, he would step back from the brink if someone could give him a miracle cure. Curiously, he may actually be hoping that the application will fail, because then, he says, the health services will offer other options. He thought that electric shock therapy might have some potential for curing him. At the moment, the authorities have not made a decision. 

The BBC asked Gilles Genicot, a bioethicist at the University of Liege, to comment on the case, as he is also a member of Belgium's euthanasia review committee. He said: 

"It's more likely he has psychological problems relating to his sexuality. I cannot find a trace of actual psychic illness here. But what you cannot do is purely rule out the option of euthanasia for such patients.

"They can fall within the scope of the law once every reasonable treatment has been tried unsuccessfully and three doctors come to the conclusion that no other option remains."

California’s right-to-die law was rolled out this week and at least one doctor immediately opened up a dedicated assisted suicide clinic in San Francisco. 

At Bay Area End of Life Options, Dr Lonny Shavelson, a well-known advocate of assisted suicide, will advise people who are wondering whether they ought to end their lives.

Dr Shavelson denies that he will be operating a drive-in suicide service. He says that he wants to work with patients to explore all the legal and therapeutic options. "When somebody says to a physician that they want to talk about the End of Life Option Act and says, 'Can you give me a prescription that will end my life?' I want them to tell me why," he told the San Jose Mercury. "A major goal of physicians is to make this (prescription) not happen."

His fees will be US$200 for an initial consultation plus $1800 if the patient is qualified and wishes to continue.

Marilyn Golden, a disability rights advocate who campaigned against the new law, is alarmed by this initiative. "It's disturbing because it suggests that if you set up a practice focused on assisted suicide, some people will get assisted suicide," she said. "How dogged are they (doctors) going to be in their pursuit of solutions that address the patient's underlying reasons for requesting death? … If they go all the way to the nth degree of assisting that person, that's terrific. But it's worrisome to see people advertising themselves for this, unless they plan on talking everybody out of it by getting them services."

On his website, Dr Shavelson describes himself as “a consultant for patients at the end of their lives who are considering physician aid-in-dying”. He is also an author and  journalist. His first interest in physician aid-in-dying led to his book A Chosen Death in 1995.  

Wesley J. Smith, a bioethicist and campaigner against assisted suicide, was scathing.

Despite his potential lack of medical expertise about conditions, he will be allowed to decide if a patient qualifies for death doctoring, and he could well be wrong as he can’t possibly keep up with all the changes in a particular field as do real medical specialists in those areas of practice. But that doesn’t matter. All that matters under the assisted suicide law is having the MD degree and the license allowing him to write a lethal prescription. That means the most incompetent doctors–the utter bottom feeders–can become death doctors.

Elon Musk, billionaire co-founder of PayPal, and the boss of boss of Tesla and SpaceX, fears that Artificial Intelligence is advancing so fast that humans may end  up being house pets for robots.

He told a code conference at San Francisco that we are effectively already cyborgs; what is needed is an upgrade of our intelligence which he calls a “neural lace” injected into the brain. This would allow people to access the internet immediately and vastly improve human cognition. “Somebody’s gotta do it, I’m not saying I will. If somebody doesn’t do it then I think I should probably do it,” he told the conference.

This is not as crazy as it sounds. In a recent issue of Nature Neurotechnology researchers claim that they have injected neural lace into the brains of mice without ill effects. The wire and plastic mesh is so fine that it integrates into brain tissue and “eavesdrops” on neural chatter. It could become a way of communicating with the brain to help the disabled or to enhance performance. “We have to walk before we can run, but we think we can really revolutionize our ability to interface with the brain,” says a co-author, Charles Lieber, a nanotechnologist at Harvard University.  

The novel idea of neural lace is that it can be injected into the bloodstream and does not require complicated surgery.

However, another of Musk’s ideas does sound a bit crazy. He also mused at the code conference that our world is a computer simulation of our descendants far in the future. "There's a one in billions chance that this is base reality," Musk said. Here’s his argument:

The strongest argument for us being in a simulation probably is the following. Forty years ago we had pong. Like, two rectangles and a dot. That was what games were.

Now, 40 years later, we have photorealistic, 3D simulations with millions of people playing simultaneously, and it's getting better every year. Soon we'll have virtual reality, augmented reality.

If you assume any rate of improvement at all, then the games will become indistinguishable from reality, even if that rate of advancement drops by a thousand from what it is now. Then you just say, okay, let's imagine it's 10,000 years in the future, which is nothing on the evolutionary scale.

So given that we're clearly on a trajectory to have games that are indistinguishable from reality, and those games could be played on any set-top box or on a PC or whatever, and there would probably be billions of such computers or set-top boxes, it would seem to follow that the odds that we're in base reality is one in billions.

Victoria’s ‘Inquiry Into End of Life Choices’ has recommended the legalisation of assisted dying. The report is a sizable document – the summary alone is 40 pages – but the authors saved the most controversial matters till last. After almost 50 recommendations about palliative care and advanced care planning, the report concludes with an unequivocal recommendation that Victoria legalise assisted dying. The final recommendation (no. 49) is:

“That the Victorian Government introduce a legal framework providing for assisted dying, by enacting legislation based on the assisted dying framework outlined in this Report”

The recommendation is followed by an annex outlining a framework for assisted dying, including criteria for eligibility and a proposed system for oversight and review. The sorts of patients who would be eligible would be over 18 years, suffering from a serious and incurable illness, and “at the end of their life (final weeks and months of life)”.

Annexed to the report are two dissenting opinions from committee members.  Inga Peulich MLC summarized the concerns about human destruction via assisted suicide:

Any accidental loss of life – even the loss of one life, means such a regime cannot be justified, just as the loss of life, due to capital punishment, deliberate or due to a possible miscarriage of justice, cannot be justified and was the reason for its abolition.

Dr Rodney Syme, vice-president of Dying with Dignity Victoria, said he was “delighted” by the report, particularly the approach it took to dismissing “fear-based arguments” against the law. Syme said he was confident parliament would pass the laws if both major parties allowed a conscience vote.

Writing for Online Opinion, Paul Russell, the director of the advocacy group HOPE, suggested the report was a ‘sugar coated pill’ that would make for bad policy if enacted:

“The Majority Report in its conclusions and recommendations on assisted suicide, have presented the Parliament and the people of Victoria with a sugar-coated poison pill. We hope that the government of the day will see through this charade and act at all times to protect vulnerable people while prioritising palliative care.”

The headline in the BBC was “Three-person babies IVF technique ‘safe’”. This echoed the press release from Newcastle University: “New safety and efficacy evidence for mitochondrial donation revealed”.

The news was that UK scientists have published a paper in Nature claiming that a technique for ridding a woman’s egg of defective mitochondria -- which was legalised last year -- has been proved safe. What failed to surface in the news coverage were other headlines only a month ago over stories which reported American research that the “three-person baby” technique was unlikely to work because some of the defective mitochondrial DNA carry over.

Which is right?

A thoughtful analysis of the two papers by stem cell researcher Paul Knoepfler, of the University of California, Davis, suggests that the British scientists might be painting too rosy a picture of the controversial technique.

"ln my view, together this new Herbert group paper [from the UK] along with Egli’s relatively recent paper [from the US] ... clearly indicate that the field is not ready to use this technology to create actual people. It would be reckless to do so now without getting more data first. To their credit, Herbert’s group acknowledges the challenges in discussing their data in what is a very important paper.

British newspapers were highlighting claims that 3-person babies could be born within a year. But Knoepfler is sceptical:

The overall take-home message here from this Herbert group manuscript and the one from Egli’s group is that mitochondrial replacement therapy is not ready for use in humans and substantial additional data over the next few years is needed first before even considering proceeding.

I believe it also concretely shows that the legislative approval of this technology for use in humans in the UK last year, based in part on vigorous claims from proponents in the UK that there were plenty of data already, was more political than scientific.

And, yes, I’ll probably get in hot water for saying this.

The United Nations Human Rights Committee says that Ireland’s abortion laws are a violation of human rights.

In a controversial judgement – the outcome of a case involving dual Irish-US citizen who had to travel to the UK to terminate her non-viable pregnancy – the Committee called on the government to allow women free access to abortion, labelling extant laws “cruel” and “inhumane”. The Committee also asked authorities to compensate the woman, 42-year-old Amanda Mellet, for the distress and trauma she experienced.

Ms. Mallet travelled to the UK for an abortion in late 2011. She told the Committee she experienced immense emotional and psychological distress as a result of having to go abroad for the procedure.

The Committee called on the government to reform the abortion law to protect women in the future:

“…the State party should amend its law on voluntary termination of pregnancy, including if necessary its Constitution, to ensure compliance with the Covenant, including effective, timely and accessible procedures for pregnancy termination in Ireland, and take measures to ensure that health-care providers are in a position to supply full information on safe abortion services without fearing being subjected to criminal sanctions”.

Amnesty International welcomed the ruling, and renewed their campaign for legislative reform.

"The Irish government must take its head out of the sand and see that it has to tackle this issue," said Amnesty’s head of Ireland, Colm O'Gorman.

Yet some see the ruling as deeply political, and an attempt to bully the country into legislative change. Writing for The American Spectator, Daniel J. Flynn stridently criticised the Committee’s “ideological” ruling:

“In the name of human rights, the United Nations orders Ireland to repeal the right to life embedded in the Catholic country’s Constitution. Will they next command governments to supply muzzles to silence nonconformists in the name of freedom of speech?”

Abortion is permitted in Ireland only when there is a risk to the life of a pregnant woman. Pro-choice organisations are currently lobbying the government to broaden this provision to include cases of rape, incest, inevitable miscarriage and fatal fetal abnormality.

Australian IVF clinics will require donor recipients to be tested for pregnancy, following a case where a client deceived an IVF clinic about the outcome of her donor-gamete fertility treatment.  

Earlier this year it was reported that a donor recipient had lied to a clinic about miscarrying a child conceived using a donor egg; the woman wanted to avoid honoring an arrangement with the gamete donor to allow for contact with any children resulting from treatment. 

The Fertility Society of Australia, the industry’s peak regulatory body, unanimously agreed on new regulations this week, saying the extant IVF guidelines were open to abuse.

Clinics will now require women who use donor eggs, sperm or embryos to give a written undertaking to have a blood test to verify whether they fall pregnant. Recipients of donor treatment who fail to provide the results of a pregnancy blood test will be reported to State authorities. 

FSA vice-president Professor Luk Rombauts said the new guidelines were a way of “reducing the risk of unfortunate outcomes in the future.”

The amendments also included provision for the documentation of agreements made between donors and recipients during counselling sessions. 

With an election round the corner, the Presidential Commission for the Study of Bioethical Issues is coming to the end of its term. The Commission recently released its final report, entitled Bioethics for Every Generation: Deliberation and Education in Health, Science and Technology. The report discusses the complexities bioethical decision-making in an age of deep ideological disagreements and rapid biomedical progress. The Commission members are optimistic, suggesting that agreement can be reached on substantive bioethical policy matters through processes of “democratic deliberation”. The report proposes an ambitious educational program to improve the bioethical literacy of the public, and also outlines a series of civic virtues that policy stakeholders should adopt when debating ethical issues.

Last week Xavier Symons, of BioEdge, conducted an email interview with Col. Nelson L. Michael, MD, PhD, about the report and the future of bioethics in the United States. Col. Michael is a PCSBI member, and also Director of the U.S. Military HIV Research Program at Walter Reed Army Institute of Research. 

******

BioEdge: Hillary Clinton and Donald Trump are the likely candidates for the Presidency. Will the Commission continuing to function under a new administration?

Nelson Michael: From 1974-1994, national bioethics bodies in the US were established by Congress. Since the mid-1990s, each of the last three presidents, Bill Clinton, George W. Bush, and Barack Obama, has established bioethics commissions to explore ethical issues in science, medicine, and technology. President Barack Obama created the current commission by Executive Order in November 2009. This Commission’s tenure will end when the next President is inaugurated.

Whether to establish a national-level bioethics body will be up to the next President, whoever he or she turns out to be.

What issues is the Commission likely to address in the near future?

This Commission will end its work when the next President is inaugurated, in January 2017. For the next 6 months, the Commission members and staff will continue to develop educational materials and conduct outreach events all across the country, to publicize the 10 reports it has published during its tenure.

To date the Bioethics Commission has:

If the Executive Office of the President asks the Bioethics Commission to study a particular subject or answer a particular question in the last few months of its tenure, the Commission will turn its attention to that topic. However, absent a request from that office, the Bioethics Commission will complete its work by reflecting on the past, present, and future impact of national bioethics advisory bodies with the goal of charting a path forward.

CRISPR technology seems to be a game-changer in biotechnology -- and bioethical debates. Do you really think it’s possible to avoid spirited debate over it use?

Not at all.

The Bioethics Commission welcomes a spirited debate on issues of emerging technologies that implicate deeply held values, such as CRISPR/Cas. The Bioethics Commission concluded its most recent report, Bioethics for Every Generation, with a discussion of CRISPR/Cas technology.

National and international science communities are grappling with the ethical and societal implications of CRISPR/Cas, a powerful and efficient technology that is being used by thousands of scientists to edit plant and animal DNA, and that researchers hope to use to alter human genes to cure and eliminate certain diseases. Despite CRISPR/Cas’s promise, potential consequences include the possibility of an error in genetic engineering, use of the technology for bioterrorism, and unanticipated implications for future generations of altering even such seemingly harmless genes as eye color. CRISPR/Cas also raises concerns about the potential implications of altering the “germline,” or the DNA of future generations of humans.

The continued research and use of CRISPR/Cas technology is a topic well-suited for public discussion using democratic deliberation. A host of complex questions concerning how we should use CRISPR/Cas technology are open for debate. For example, what limits—if any—should we place on its use in humans? Deliberating about CRISPR/Cas now is of utmost importance because the technology is on the cusp of use in humans, including human embryos.

The National Academy of Sciences (NAS) has initiated an effort to do just that. NAS is committed to examining both the scientific as well as the “clinical, ethical, legal, and social implications of human genome editing technologies.” Dr. David Baltimore, chair of the NAS committee emphasized, “This is the way decisions get made in a democracy. We may not be representative of all America, but it is a beginning process and an ongoing process. It does establish a precedent for the handling of difficult issues that we can be proud of.”

The idea of "democratic deliberation" seems modelled on the process used in the UK to produce a scientific consensus? It was successful, but was criticised for smothering substantial debate in focus groups and reports. How would you respond to this criticism?

In fact, the process used by the Human Fertilisation and Embryology Authority (HFEA) in the UK to address the issue of mitochondrial donation encouraged and facilitated public debate. The discussions were facilitated using democratic deliberation, which emphasizes mutual respect and reason-giving. This distinguished those conversations from the kind of debates we are more accustomed to, which often involve name calling, personal attacks, and political sound bites.

HFEA hoped to “stimulate a rich and varied public debate, to help [it] make an informed decision” about regulations for this promising new intervention. HFEA partnered with Sciencewise, a U.K. publicly funded national center for public dialogue in science and technology policy, to design a 13-month public dialogue process by using deliberative workshops, open consultation meetings, a representative survey, patient focus groups, and an open consultation questionnaire.

Democratic deliberation is not foolproof—limitations and challenges exist with every method of decision making. However, in general and compared with the status quo in our U.S. political system, deliberation has many advantages. It provides a morally and practically defensible way for addressing hyperpartisan gridlock. It also promotes mutual respect rather than fueling the sharp polarization and heightened differences that make consensus and legitimate outcomes nearly impossible in our current context.

Could you explain the idea of lifelong bioethics education? It seems very ambitious!

Ethics education is best when it builds on itself over time. Just as we would not expect to develop math skills in an engineer or an accountant by starting with calculus, similarly, we cannot expect to develop ethics literacy unless we build an early foundation starting with the basics. To build ethics literacy, broad-based ethics education must start early, before students begin to track into more specialized interests and careers. Over time, ethics education should reflect societal and technological evolution, become more targeted, and provide preparation for the particular challenges that health, science, and technology professionals are likely to face.

Ethics education can be integrated into existing classes, and tailored to context. With younger students, ethics education might consist of a broad base of pedagogy about basic moral principles by using different age-appropriate methods to encourage children to start thinking about morality and ethics and by using examples they might encounter during their lifetime. In undergraduate courses, discussion and instruction on ethical and social issues might be tied more closely to specific subjects—for example, a molecular biology class might consider the ethics of stem cell research. In graduate or professional school, ethics training can be tailored to particular issues that professionals in that field are likely to encounter.

In a press release, Commission Chair Amy Gutmann was quoted as saying, “Bioethics involves matters of life and death, as well as deeply held values. They are not problems that we can solve in 140 characters.” Could you comment on the role of the media in facilitating bioethics discussion in the greater community?

Media can be a very important and useful tool for disseminating information and starting conversations. But to solve the really tough dilemmas we face as citizens and as individuals, we need more than 140 characters. We need time and space for reflective deliberations; we need time to educate ourselves and understand others.  This cannot be done by relying on sound bites, tweets, or hyped headlines as our only method to engage with complex issues.

The Bioethics Commission has used news media and social media extensively to promote its materials and help its reports reach a wider audience. We hope that those outreach efforts lead people to access our reports and educational materials and take a deeper dive into some of the bioethical issues that affect us all.

That bioethicists regard the lives of animals as more important than infants or disabled humans is a common complaint amongst their critics. The death of a silverback gorilla in the Cincinnati Zoo serves as a test of this hypothesis.

Earlier this week Harambe, a 17-year-old male, grabbed a 4-year-old boy who had eluded his mother and scrambled into the enclosure. Zoo authorities ordered Harambe to be shot, fearing that he would injure or kill the child. The boy was unharmed, apart from bruises and scratches.

Harambe had been raised in captivity and was destined to be a stud for an endangered species. So his death was a minor setback for the future of gorilladom.

On social media the reaction to the incident was immediate and angry. An internet petition demanding “justice for Harambe” called upon authorities to charge the parents of the child with negligence. At last count it had secured 495,000 signatures. Criticism of the parents (whose names have not been released was savage: “That gorilla wouldve been a better parent than the mother” was a typical tweet. More extreme was “If your kid purposefully falls into a gorilla cage, you should just tell your kid goodbye. That's called Darwinism.”

However, in the mainstream media, support for the staff of the zoo was nearly universal. The child’s safety was paramount; the choice was obvious. Frans de Waal, a leading primatologist, said in an extended comment on Facebook that the zoo staff faced a “horrible dilemma”. Even PETA (People for the ethical treatment of animals) did not denounce the decision.

What the incident did provoke was interest in the abolition of zoos. “Captive apes don’t all die from a gunshot; but almost all die having never really experienced what it is to be a gorilla,” remarked columnist Andrew Revkin in the New York Times. And in Scientific American ecologist Mark Bekoff wrote:

Harambe is dead and the boy is alive. I’m very sad, and also very happy. A gorilla's life was traded off because a human child was in danger. What needs to be done in the future to be sure that events like this never happen again? First, zoos need to stop breeding animals who are going to live in zoos for the rest of their lives. Zoos also should be turned into sanctuaries for the animals themselves. Over time there will be fewer and fewer captive animals and zoos as we know them can be phased out. And, the money that is saved as time goes on can be used to preserve populations of wild animals and their homes.

Outrage is amongst the things that the interest does best. Perhaps those bilious reactions show that many people have no understanding whatsoever of the travails of caring for young children. Elissa Strauss, Slate’s parenting expert, pleaded with the twitterati for some understanding:

Today’s mothers and fathers are constantly denounced as helicopter parents—micromanagers and overcoddlers of their children who will never learn how to be independent. The finger-pointing at the parents of the boy at the zoo suggests that there is no such thing as the right amount of parenting. Things go wrong because either we’ve done too little or done too much. Either way, it’s all our fault.

On balance, then, when push comes to shove, most serious people probably still back human life over the lives of our closest relatives in the animal kingdom. 

The editor-in-chief of one of the world's leading reproductive medicine journals has attacked the rising use of intracytoplasmic sperm injection (ICSI) for the treatment of infertility, following publication of the latest world report on assisted reproductive technologies (ART).

The report in Human Reproduction shows that while ICSI use has levelled off in some regions, its use is approaching 100% of assisted reproduction cycles in the Middle East and a few countries in other regions, despite the fact that ICSI was developed for the treatment of male infertility, which is a factor in around 40% of couples seeking fertility treatment. The world report covers the years 2008, 2009 and 2010 -- the years for which the most recent data are available.

In a savage editorial entitled "Santa Claus in the fertility clinic", to accompany the world report, Professor Hans Evers highlights the fact that in 2010 there were 220,000 in vitro fertilisation (IVF) treatments, but there were more than 455,000 ICSI treatments in the world. There was 1.4 times as much ICSI than IVF in Asia, twice as much in sub-Saharan Africa, just over twice as much in Europe, 2.7 times as much in North America, more than 6 times as much in Latin America and more than 60 times as much in the Middle East. (Statistics for the ICSI:IVF ratio for Australian and New Zealand were not available.)

He writes that doctors are guilty of over-estimating the effect of ICSI. "The majority of the patients who will get pregnant with intracytoplasmic sperm injection (ICSI) will also do so with IVF."

Studies have shown that ICSI results in fewer live births than IVF when used for couples where male infertility is not the problem. "Intending to improve their patients' pregnancy probability by preventing fertilization failure, well-meaning doctors actually decrease their chances. This has to stop. We have pledged to do no harm," he writes.

Prof Evers says doctors will serve their patients best by making decisions based on the evidence, "not by playing Santa Claus and doling out nicely wrapped presents of unnecessary, ineffective and costly care."

The authors of the ICMART report say that the reasons behind the high use of ICSI are not fully understood and are beyond the scope of their report. They write:

"Investigating why ICSI is a preferred fertilization technique in a number of countries, particularly in Latin America and the Middle East, is warranted."  

The risk of birth defects with ICSI is small but statistically higher than with conventional IVF – which also has an elevated risk of birth defects. As well, using ICSI as a remedy for male infertility risks passing on infertility to the next generation.

The report shows wide variation in the use of ART between countries. Globally, ART use remained fairly constant, with 436 cycles per million of the population in 2008 and 474 cycles per million in 2010.

However, ART use ranged from 4,775 cycles per million in Israel (which had consistently the highest levels of access over the three years) to just 8 cycles per million in the Dominican Republic in 2010. In the same year there were almost 2,500 cycles per million in Australia and New Zealand, more than 900 per million in Europe, 570 cycles per million in North America, 150 cycles per million in Latin America and nearly 90 cycles per million in sub-Saharan Africa. 

After the Chinese government’s abandonment of the one-child policy, scores of older couples are turning to IVF in a desperate bid to have a second child.

According to government officials, demand for IVF at major clinics in Beijing and Shanghai has increased dramatically. “Fertility centres at renowned medical organisations in Beijing and Shanghai and others are under increased pressure for treatments,” officials from the Women’s and Children’s Department said.  

“More and more women are coming to ask to have their second child,” said Liu Jiaen, who runs a private hospital in Beijing treating infertility through IVF, in which an egg and sperm are combined in a laboratory dish and the resulting embryo is transferred to a woman’s uterus.

Dr Liu told Associated Press that he estimated the numbers of women coming to him for IVF had risen by 20% since the relaxation of the policy, which came into effect at the start of the year. Before, the average age of his patients was about 35. Now most of them are older than 40 and some of the women are fast approaching 50, he said.

There are also reports that an increasing number of Chinese couples are heading overseas for IVF treatment. IVF treatment in other countries is typically cheaper and also gives parents the option of choosing the gender of their child (sex-selective IVF is prohibited in China).

According to the Global Times, the number of IVF tourism agencies in China has increased from five in 2013 to over 50 in 2016.

“In 2014, our agency received an average of four patients per month,” said Anna Yao, the marketing director of IVF tourism agency Kai Xin Guo. “That number has risen to around 15.” 

Australian company Monash IVF is currently considering expanding into China to take advantage of the ART boom. 

IVF companies in Australia have come under fire following a Four Corners investigation.  

The report, aired on ABC TV on Monday, contained interviews with several couples who had undergone unsuccessful – and at times, exceedingly painful and distressing – IVF treatments. 

The report also explored conflicts of interest and alleged widespread deceptive practices in the IVF industry.

Writing in The Conversation, researchers from Sydney University’s VELIM Centre and Macquarie University said that concerns about conflicts of interest in the IVF industry must not be dismissed.

“Four Corners highlighted the conflicted nature of commercialised IVF, where some IVF doctors are more concerned about their own interests (making money for themselves or their clinics) than they are about their patients.”

It is therefore not unreasonable for people to be concerned some clinicians may be motivated (perhaps unconsciously) by financial conflicts of interest to make decisions that may not be in the best interests of their patients.

Macquarie University health law expert Sonia Allan said serious questions need to be asked of the IVF industry in Australia:

“I think there are ethical issues surrounding the unlimited amount of public funding that is being put towards some of these treatments, and probably perverse incentives for doctors to continue with these treatments because of the increased money that can be made, particularly when the industry has become so commercialised.”

Allan suggested that there is need for external regulation of the IVF industry.

Professor Rob Norman, an Adelaide doctor who is a world authority on reproductive health, told Four Corners of his dismay at the increasing commercialistion of IVF. “I think with the commercialisation of IVF that's occurring, there's a pressure in every single clinic to use IVF more, and IVF brings in more money for a clinic,” he said. Furthermore, for some women who go through the painful and stressful experience of IVF, it was not really necessary. Cheaper and simpler methods would have worked just as well for them.

The program also featured one of the pioneers of Australian IVF, Professor Gab Kovacs, who made the extraordinary admission that he had once given a woman 37 IVF cycles. “You can’t say No” to a woman who is desperate to have a child, he told the journalist. “Embryos are like mud; you keep putting embyros on the wall of the uterus and eventually one will stick.” 

Here’s a very helpful resource in debating euthanasia: the code of practice for the regional euthanasia review committees in the Netherlands in English. (This is a link to a PDF. Choose the second option to download the file.)These are the guidelines which doctors must follow in carrying out euthanasia. For those who cannot read Dutch, the fine details of the legislation and regulation have been difficult to reference. Now they are available in a definitive form.

Here are some relevant paragraphs:

It is often said that the [e Termination of Life on Request and Assisted Suicide (Review Procedures) Act] legalised euthanasia. In formal terms, this is not the case. Under articles 293 and 294 of the Criminal Code, euthanasia is prohibited in the Netherlands, except in the event that it is performed by a physician who has complied with all the due care criteria set out in the Act (see below) and has notified the municipal pathologist in question. …

The Act says nothing about the patient’s life expectancy. In cases where the statutory due care criteria have been fulfilled, the patient’s life expectancy plays no role. In practice, it will often be limited, but the Act does not rule out granting a request for euthanasia from a patient who might have many years to live. The key elements are the voluntary, well-considered nature of the patient’s request, the unbearable nature of his suffering and the absence of any prospect of improvement. There is no provision in the Act that euthanasia may only be performed in the ‘terminal stage’. …

The fact that the above due care criteria have been met does not mean that the physician is obliged to comply with a patient’s request for euthanasia. Patients have no right to euthanasia, and physicians no duty to perform it. It is generally wise for a physician to inform the patient at an early stage if he does not want to perform euthanasia, so that the patient can, if desired, approach another physician.

One problem sector in regimes which have legalised euthanasia is demented people who have made advance directives asking for euthanasia. They have drifted away from terra firma, but they often are sailing quite happily along and no longer request life-ending treatment. They seem to have an adequate quality of life. In technical terms, they have undergone a “response shift”. Should they be denied a choice they made when their feet were firmly on the ground?

A recent article in the Journal of Medical Ethics argues that their choice should probably be honoured. Three authors from the Netherlands and Germany contend that demented people do not really undergo a response shift because their disease makes them unable to change their values.

Dementia patients do not choose what they forget, therefore what they still remember and the values they still express are not to be considered the ones with the highest priority. Which values and preferences remain is not the result of a conscious choice but is dictated by the disease. It is therefore a false conclusion to say that the dementia patient no longer ‘cares’ about the things that mattered when he did not have dementia.

This implies that the current wishes of a person with dementia should not necessarily be respected if they have made an advance directive requesting euthanasia: “It is unwarranted to argue that one's current well-being should always take precedence over all other values once a person is incapacitated.” The authors stress that advance directives should not followed blindly, but neither should carers refrain from euthanasing demented people simply because they look happy as Larry in their present condition. 

A new film by English director Thea Sharrock, Me Before You, has been met with scathing criticism from disability rights activists. 

The film tells the story of a young paraplegic, Will, and his new carer, Lou, with whom he develops an unlikely romantic relationship. The film has the typical trappings of a Hollywood rom-com – stunning actors, wealth, castles – yet with one not so subtle twist: Will wants to be euthanized.

For those who haven’t read the eponymous book, I apologise for the spoiler. But despite their burgeoning romance, Will and Lou don’t live happily ever after. Unlike the similar film The Intouchables, the tenor of this story is the Will’s paraplegia is not worth enduring. He choses to end his life, despite Lou’s objections.

Disability rights activists protested at the premier of the film in London earlier this week, unveiling a placard that read: “Me Before You is not a romance. It is a disability snuff movie, giving audiences the message that if you’re a disabled person you’re better off dead.”

Writing in The Guardian, disability rights activist Penny Penner attacked the film’s ‘anti-disability’ message:

“A piece of fairytale romance is what it purports to be, but what perhaps is a clever device for writer Jojo Moyes, to me underlines the view that you are better off dead than a living, disabled burden on your loved ones.”

A French Court has ruled in favour of allowing a dead man’s sperm to be sent to a foreign IVF clinic, despite France’s prohibition on insemination using sperm from deceased males. 

The country’s Council of State (Conseil d’Etat) ruled in favour of a Spanish national, Nicola Turri, who had requested that the sperm of her deceased Italian husband, Mariana Gomez-Turri, be exported to Spain, where she now lives.

The couple was living in France when Turri was diagnosed with cancer of the lymphatic system. He froze his sperm before starting chemotherapy, a routine procedure due to the fact that treatment can cause infertility. Turri died in 2015.

The court acknowledged that Spanish law permits post-mortem insemination, and decided that the denial of the application would constitute “an excessive interference” with the widow’s “rights to respect for private and family life”.

The woman’s lawyers called the decision “extraordinary and unprecedented”. The court believed that the decision was consistent with a commitment to maintain the integrity of French law. “Neither Ms Gomez nor the child will have links with France,” said the court’s spokesperson, “because the husband wasn’t French.” 

A new edition of the American Journal of Bioethics explores a unique aspect of enhancement technologies – the possibility of remedying social disadvantage through cognitive enhancement.

Social disadvantage is taken by many to be structural and very difficult to remedy. The AJOB edition takes this as a given, and considers enhancement as an alternative strategy.  

In a target article for the edition, University of Texas at Houston bioethicist Keisha Shantel Ray argues that the use of cognitive stimulants such as Adderall and Ritalin is a morally acceptable way to improve the academic performance of disadvantaged children and, indirectly, remedy social inequality.

“What morally matters when we are disadvantaged through luck, or through no choice of our own, is how disadvantages affect access to resources and how we address these disadvantages. Stimulants could be one way to address these disadvantages by giving students the tools to function within their disadvantaged setting. Some may be unwilling to use stimulants for these purposes…however, I argue that we have to be willing to consider stimulants as an option because we are not correcting students’ disadvantages in other, more traditional ways.”

Ray acknowledges the common argument that enhancements are a kind of superficial solution for a deeper problem; but she believes a pragmatic approach may be necessary. 

“Stimulants may be a better practical and just solution in our current unjust situation”.

Sebastian Sattler (a sociologist from the University of Cologne) and Ilina Singh (a neuroscientist from Oxford) are sceptical of Ray’s proposal, and note that there have been no clinical trials to test the enhancement potentials of prescription stimulants in healthy children. (Sattler also expressed his concerns in an AJOB blog post).

Anthropologists Fred B. Ketchum (University of Chicago) and Psychiatrist Dimitris Repantis (Charite – University Hospital Berlin) argue that Ray’s approach is a subtle way of medicalizing social disadvantage:

“We contend that Ray’s argument relies on an untenable distinction between “social” and “biological” pathologies. Social scientists and philosopher of medicine have long demonstrated that biological norms are not independent of social norms, but always intertwined with them.” 

The most famous clinical trial of all time was Edward Jenner’s experiment with a smallpox vaccine. He had a hunch that exposure to cowpox would protect humans against smallpox. So he immunised James Phipps, the son of his gardener, and then deliberately infected him with smallpox after six weeks and later on as well, another 20 times. “Poor Phipps” did not die, at least not of smallpox, and his cooperation saved hundreds of millions of lives.

This is a milestone in modern medicine, but Jenner’s experiment would not pass an ethics review nowadays. For one thing, Phipps hardly gave his informed consent. However, unknown to most people, Jenner’s methodology is still used. Healthy people are being infected and observed to see whether they become ill (or die). Nowadays the technique is called a Human Challenge Study (HCS).

An article this week in Science profiled some of the leading figures in HCS in the United States. Volunteers are being deliberately infected with infected with malaria, influenza, shigella, dengue, norovirus, tuberculosis, rhinovirus, Escherichia coli, typhoid, giardia, and campylobacter. Researchers try to make the virus as attenuated as possible to minimise the danger and then treat the illness as quickly and effectively as possible.

In many ways HCS is better than standard clinical trials. It is faster, cheaper and can give useful information about potential side effects of treatments.

HCS have been in a bad odour for decades, largely because of Nazi experiments on prisoners in concentration camps. The world was outraged and some of the doctors were hanged, but in the US similar experiments were carried out on prisoners, without their consent. However, researchers like Levine insist that well-regulated, ethical HCS is possible – and is desperately needed.

What about volunteers? Astonishingly HCS researchers do not find it difficult to recruit subjects even for exotic diseases like cholera or dengue fever.

At least one company specialises in conducting HCS trials, hVIVO, a London-based firm. Its “Flu Camp” website tells potential volunteers that they can earn up to £3,450 Pounds by working 10 to 14 days and living in a quarantined hotel. 

Commentators have clashed over the US Supreme Court’s decision not rule on a case involving the forced provision of contraceptives by Catholic order Little Sisters of the Poor.

On May 16 SCOTUS announced, in a unanimous decision, that it would not decide the case on its merits but instead sent the case back down to the lower courts for opposing parties to work out a compromise. The court said that in the course of litigation both parties had clarified their position and that they should be able to “arrive at an approach”.

Supporters of the plaintiffs saw the decision as a victory.

Bill McGurn of the Wall Street Journal suggested that the case represented a direct attack on religious groups in society:

“In short, the Obama administration’s goal was not just getting contraceptives to women. It was also to do so in a way designed to force religious groups such as the Little Sisters to cry “uncle.””

But advocates of the government’s contraceptive mandate stridently criticised the decision. New York Times journalist Linda Greenhouse exhorted the federal government to continue to the fight against the plaintiffs: 

“…it’s time for the administration and its supporters to recapture the narrative and make clear to a confused public that this is not a case about nuns. It’s a case about women who should not, by reason of their particular employment, have to forfeit the right to comprehensive health care that the law makes available to other women in the work force. Wishful thinking, perhaps, but an urgent task.”

Writing in Harvard’s Petrie-Flom Center blog, Greg Lipper – Senior Litigation Counsel Americans United for the Separation of Church and State – said that “the one-track focus on the Little Sisters overlooks the tens of thousands of women affected by these cases and who risk losing the contraceptive coverage to which they’re entitled by law.” 

Doctors have clear ethical obligations to patients in an end-of-life situation. But what if those patients don’t realise they’re at the end of their lives?

A new study by US researchers suggests that advanced cancer patients have a very poor understanding of their own condition, and that they are typically in need of regular updates on their prognosis from doctors.

Dr. Holly G. Prigerson of New York Presbyterian Hospital worked with a team of three researchers to investigate how much terminal cancer patients understand about their own illness. The team interviewed 178 patients with advanced cancers whom oncologists expected to die within 6 months. Illness understanding scores were taken based on the patient’s acknowledgement of their terminal and advanced condition, and their expectation that they would live months instead of years. The results, published in The Journal of Clinical Oncology on Monday, were quite alarming.

“Results of this study demonstrate how poorly patients with advanced cancer understand their prognoses and how effective recent prognostic discussions are to improve illness understanding by patients… A small minority [5%] of patients accurately, and completely, understood the gravity of their illnesses…”

The authors observed that there is a need for doctors to provide patients with regular updates on their condition:

“These results highlight the need for timely (ie, current) prognostic disclosures to terminally ill patients who meet the criteria used for this study. The results also suggest that oncologists should discuss prognosis on an ongoing basis, and as frequently as appropriate, with their terminally ill patients. If this occurred, patients would likely have better illness understanding and, thus, make more informed decisions about their end-of-life care.”

Prigerson suggested that part of the phenomenon could be attributed to patient’s desire not to know about their condition.

"Our point is a lot of them don’t want to know, but they need to know basic information about the disease and illness and treatment options," she told ABC News.

“It’s a difficult topic,” said Prigerson. “Have patients understand that, if they are being offered treatment, it’s not a cure and they really have months, not years, to live.”

Dr. Barbara Daly, the director of the clinical ethics program at University Hospitals Case Medical Center, said that some doctors speak in medical terms that can be confusing for a patient.

“It takes a high level of skill to talk to people ... to present it in a way where it’s understandable," she said. "Doctors ... they literally forget how to talk like a normal person.” 

In a landmark decision, the High Court in the UK has ruled that it is discriminatory to prevent single men or women from becoming the parents of babies born to surrogate mothers. The government will probably have to update its legislation to make it compatible with the ruling.

Until now, only couples in a stable relationship could become parents of a child born to a surrogate mother. Single people could adopt children, but they were not automatically entitled to be regarded as a parent if their child was born to a surrogate.

In this case an unnamed man used his sperm, a donor egg and a surrogate mother in Minnesota to create a child, who is called “Z” in court documents. But when he brought the baby back to the UK, he was not regarded as a parent, but rather the surrogate mother. (Ironically, in the US, the surrogate mother has no legal status.) So Z was made a ward of the court, with custody awarded to his father, a situation which will now change.

The solicitor for Z’s father, Natalie Gamble, commented: “The UK has a proud tradition of taking a progressive approach to assisted reproduction and non-traditional families, and the current surrogacy laws are a glaring anomaly which fail to uphold our most fundamental values of safeguarding children's welfare.”

The government did not contest Z’s father’s case and admitted to the court that the law had breached human rights legislation, was discriminatory against single parents and needed to be changed.

The decision was severely criticised by people who interpreted it as an attack on the traditional family. A Labour MP and former Minister Frank Field told The Mail on Sunday: “In all these decisions, the natural rights of children get overlooked. Parenting is a huge job and it’s about time that children are put centre stage, not selfish adults.”

Family policy analyst Jill Kirby commented: “This judgment undermines the traditional family and the child’s needs – the evidence shows that children will thrive much better with two parents caring for them. The Government seems to have abandoned the idea of promoting stronger families.”

Here’s an interesting promotional video for a Ukranian surrogacy clinic, BioTexCom. The company’s website advertises in Ukranian, Chinese, Italian, French, English, German, Spanish, Arabic and Romanian, which gives an idea of the breadth of its market. The promotional blurb declares, “There is no absolute infertility! We treat even the most hopeless infertility cases.”

BioTexCom is the epitome of commercial,not altruistic, surrogacy. There are three levels of service: economy (29,900 Euros), standard (39,900 Euros), and VIP (49,900 Euros). The “standard” service offers pre-implantation genetic diagnosis of embryos, a 4-hour babysitter, paediatric consultation, a hotel and gourmet lunches. For “the most fastidious customers” who enrol for the VIP package there is limousine transport, a 9am-6pm babysitter and on-call paediatric advice. Its marketing on the web and social media is professional and energetic. 

BioTexCom’s donors are “healthy, attractive and educated women”. Only two out of ten volunteers pass its rigorous tests. The outcome is “long-awaited happiness of parenthood … Save your money and get quality medical service.” 

Sir Venki Ramakrishnan / Andy Hall for the Observer    

The new president of the Royal Society, the most prestigious body of scientists in the UK, who is also the 2009 Nobel laureate in chemistry, says that a debate is needed about germline modification.

Sir Venki Ramakrishnan says that genetic engineering has great potential for curing genetic diseases and that society must weigh up the risks and benefits.

In an interview with the Guardian, Sir Venki took a broadly positive view of germline modification, even though it is currently banned in the UK.

“There is great potential in germline therapy. There are clearly diseases that you could help by editing the germline. This is a case of a new technology where there are significant potential benefits, but also significant ethical implications.”

However, he believes that it needs to be studied thoroughly to get a consensus.

“It’s definitely a major step, there’s no getting around that. That’s why it’s important to really slow down and not rush any decisions. What we need is a diverse and transparent group of people to really come together and get to grips with how do we go about using this tool and are there red lines. They may well decide there are red lines we shouldn’t cross.” 

- See more at: http://www.bioedge.org/bioethics/we-need-debate-on-germline-modification-says-leading-uk-scientist/11891#sthash.VQzR0UR7.dpuf

A protest against sexual violence in Jakarta earlier this month.    

Chemical castration will be a sentencing option for judge in Indonesia. President Joko Widodo has signed a decree authorizing this penalty for convicted child sex offenders. Those who have been released on parole must wear electronic monitoring devices.  

The announcement follows outrage over the gang rape of a 14-year-old girl in Sumatra when she was on her way home from school. Mr Joko said that:

“The inclusion of such an amendment will provide space for the judge to decide severe punishments as a deterrent effect on perpetrators”.

“These crimes have undermined the development of children, and these crimes have disturbed our sense of peace, security and public order. So, we will handle it in an extraordinary way.”

Chemical castration is an increasingly popular response to sexual abuse around the world. However, it is a controversial remedy.

“Protecting children from sexual abuse requires a complex and carefully calibrated set of responses, including an effective social services system, school-based efforts to prevent and detect abuse, treatment services for people at risk of abusing children and criminal justice measures that focus on prevention,” Heather Barr, of Human Rights Watch, told the New York Times. “Chemical castration on its own addresses none of these needs and medical interventions should be used, if at all, only as part of a skilled treatment program, not as a punishment.”

"Chemical castration is not the solution," Rahayu Saraswati Djojohadikusumo, a member of the national assembly, told a press conference: "in most cases, pedophiles are not purely driven by sexual desire, but by power and dominance”. She said that chemical castration may temporarily dampen sexual arousal, but offenders will find other ways to exert power. 

Insanity can be a legitimate defence in some criminal cases. But a team of US researchers are questioning whether criminals motivated by extreme views are of necessity insane.

In a paper recently published in the Journal of the American Academy of Psychiatrist and the Law, researchers from the University of Missouri argue that in some cases criminals should be said to have an “extreme overvalued belief” rather than being declared mentally ill.

Focusing specifically on the case of Norwegian mass murderer Anders Breivik, the researchers argue that extreme beliefs need not entail psychotic disorder. “… some people without psychotic mental illness feel so strongly about their beliefs that they take extreme actions.”, lead author Tahir Rahman said in an interview. “Our suggested term for criminally violent behavior when psychosis can be ruled out is ‘extreme overvalued belief.’”

The authors of the study draw upon the work of German neuropsychiatrist Carl Wernicke when developing this notion. When trying to develop subtlety in diagnosis of his patients, Wernicke proposed the concept of überwertige Idee (overvalued idea). The idea has lately received increased attention, particularly as a way to describe ideological factors at play in terrorism in the post 9/11 world.

Rahman and his collegues suggest that the term will be of great assistance to foresnic psychiatrists:

“Although forensic psychiatrists may not always agree on a particular individual's motives, this concept may help to sharpen their differential diagnosis in challenging cases such as Mr. Breivik's. Forensic psychiatrists should be aware of the powerful and destructive forces that extreme overvalued beliefs can unleash in any culture, subculture, political affiliation, or religion. They also should be aware of the differences in interpreting the diagnostic significance of such beliefs.” 

A new edition of the Journal of Medicine and Philosophy explores a number of important debates about brain death.

The articles in the edition are the product of a Symposium on the Definition of Death held at The Catholic University of America in June 2014. That Symposium brought together scholars from a variety of disciplines— law, medicine, biology, philosophy, and theology—who all share a commitment to the dead-donor rule and to a biological definition of death, but who have differing opinions regarding the validity of neurological criteria for human death.

Significant figures in Catholic bioethics in the North America – including Maureen Condic, Melissa Moschella, Patrick Lee and E. Christian Brugger – offer their views on what sort of conditions signal the death of a patient.

Condic and Moschella suggest that brain death, which they take to be the end of mental function and of autonomous organismal integration, signals the death of that human being.

Pace Condic and Moschella, Patrick Lee suggests brain death does not necessarily involve the end of autonomous organismal integration, but rather the end of any radical capacity for sentient activity:

“even if some brain-dead bodies are organisms, or complex entities of some sort, they are not human organisms: They lack the radical capacity for conscious sentience—a prerequisite for rationality in a human being—and so are not rational animals”.

Christian Brugger argues for a cautionary approach to the dead-donor rule, and is critical of the standard “brain-as-regulator-of-holistic-integration” rationale for the neurological definition of death.

The edition also includes a summary statement, signed by almost all the participants, outlining the broad points of agreement between interlocutors at the conference. 

Legalisation of physician-assisted suicide in four American states left out one thing: a name for what happens. The laws in Oregon, Washington, Vermont and California specify only that what happens is not suicide. An English name for this phenomenon was a topic raised at the 2016 Conference World Federation of Right-to-Die Societies in Amsterdam earlier this month.

Members of the Alt-Suicide group, an American-based internet forum which includes some of the leading names in “choosing an early exit at the end of life”, considered 31 words and phrases in 2014. These included Cathartic Death, Deliberate Life Completion, Exiting, Rational Life Termination, Non Adscititious [sic] Death, Consensual Murder, and Rational and Loving Suicide. “Dying with Dignity” was the favourite in a small survey.

One of the members of the forum, Bill Simmons, a California real estate attorney, has been lobbying hard for the word “dignicide”, even though it was the least preferred in the Alt-Suicide survey.

The analysis he presented at the conference is interesting. The movement needs, he contends, “a more positive, single word that is not burdened with negative connotation”. The members agreed that the word “suicide” should be taboo. The word should be short, so that it is easy to tweet. The task is, he says,  to “Replace an undesirable single word with a desirable single word.” Simmons concludes with a suggested slogan: “Our motto is: ‘Dignicide. You Decide.’”

No conclusion was reached about what word to use. 

As a sign of growing interest in transhumanism, the Washington Post recently featured a symposium with several distinguished writers. It may indicate a growing interest in its aspirations, in an election year when a transhumanist, Zoltan Istvan, is seriously running for President.

At the moment, transhumanism is a ill-defined and fractured movement with many different strands, ranging from more-or-less mainstream to whacky. On the mainstream side, there is the National Intelligence Council’s 2012 long-term strategic analysis document  which devotes a section to “human augmentation”. It envisages technology which will help the elderly to cope with disability and soldiers to perform superhuman feats of strength, agility and alertness. On the whacky side, there are visions of a new species of humanity and uploading consciousness to the internet.

Here are a few predictions and evaluations from the WaPo’s contributors. Most of them were solidly in favour and relatively conservative on the transhumanist spectrum.

Ronald Bailey, the science correspondent for Reason magazine and author of “Liberation Biology” and “The End of Doom.”

“The highest expression of human nature and dignity is to strive to overcome the limitations imposed on us by our genes, our evolution and our environment. Future generations will look back at the beginning of the 21st century and be astonished that some well-meaning and intelligent people actually wanted to stop bio-nano-infotech research and deployment just to protect their cramped and limited vision of human nature. If transhumanism is allowed to progress, I predict that our descendants will look back and thank us for making their world of longer, healthier and abler lives possible.”

James J. Hughes, executive director of the Institute for Ethics and Emerging Technologies

[E]merging neuroscience suggests that we will soon be able to both fix those with broken moral compasses and tune up our own internal morality … Clearly, the field of moral enhancement will need to reengage with the wisdom traditions to flesh out a more sophisticated understanding of what a mature moral character entails.

For optimal flourishing, we need to balance wisdom and compassion, self-control and transcendence. Given the freedom to experiment with our growing toolbox for self-improvement, we will each need to discover our ideal morality settings … With the aid of science, we will all be able to discover our own paths to technologically enabled happiness and virtue.

Charles T. Rubin, the author of “Eclipse of Man: Human Extinction and the Meaning of Progress, teaches political philosophy at Duquesne University in Pittsburgh.

As a result, the great powers that transhumanism promises are likely to be used not in ways that will solve human problems, but in ways that will perpetuate them yet more terribly.

That is because in a world where we have increasing power to modify our humanity, “enhancements” will still be developed by people who are not yet enhanced. Popular culture asks us to imagine how those individuals, whether in government or private industry, will make their choices in a world where darker human motives like selfishness, greed, and lust for power will play a role in decisions about what needs changing, for whom and at what price.

And those seeking enhancement will be subject to their own darker motives: to social pressures, competitive inclinations, market manipulations. Indeed, if human beings are even half as imperfect as transhumanists apparently believe, why should we trust our unenhanced opinions about what would constitute an improvement in our lives?

Rapid innovation in the wake of the development of the CRISPR gene editing technology has not caught the US Presidential Commission for the Study of Bioethical Issues napping. Armed with this tool, scientists will be eager to conduct many ethically contentious experiments with government funding -- and the Commission seems keen to facilitate this.

So, in the waning days of the Obama administration, the Commission has issued a report about decision-making in an age of bioethical change. The commission is merely an advisory body which reports to the White House and can be reconstituted or dissolved by the next President. However, its recommendations will no doubt influence policy, especially if Mrs Clinton wins in November.

Rather than dealing with a specific issue, the report, Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology, discusses how to reach a consensus on controversial issues when the broader public really doesn’t understand all the implications of policy. In the United States this has led to acrimonious debates conducted on the front pages of newspapers and on prime-time TV on issues like the death of Terri Schiavo, embryonic stem cell research, the assisted suicide of Brittany Maynard, or Planned Parenthood’s sale of foetal tissue.

Finding a way to reach a decision on such issues without Sturm und Drang is the ultimate purpose of the report. The model it proposes is “democratic deliberation” backed up by ethics education. “Democratic” does not mean that the decision-making takes place in Congress, but that it embodies qualities like respect, compromise, reason-giving, and constructive public engagement.

Ethics education is supposed to be life-long and universal, from toddlers to seasoned bioethicists:

Schools from pre-kindergarten to professional training programs can and should incorporate ethics education into their curricula to help build the ethics literacy that will enable us to reason through complex bioethical problems we all will face. Ethics education can raise the population’s ethics and scientific literacy and can help prepare everyone for the difficult conversations and decisions that bioethics presents.

The model for the Commission’s proposal comes from the United Kingdom, where the national fertility authority successfully staged a 13-month campaign to persuade Britons that mitochondrial donation was ethical and necessary. It partnered with a government-funded media office for promoting science and organises deliberative workshops, open consultation meetings, a representative survey, patient focus groups, and an open consultation questionnaire. The result was an easy win in Parliament, despite an outcry from opponents over the creation of three-parent embryos.

Whether “democratic deliberation” will work across the Atlantic in a more diverse and polarised society is hard to judge. But the Commission feels that it is the best way to break deadlocks in science policy:

It provides a morally and practically defensible way for addressing hyperpartisan gridlock. It also promotes mutual respect rather than fueling the sharp polarization and heightened differences that make consensus and legitimate outcomes nearly impossible in our current context. 

A group of scientists in the US are continuing to conduct research on human-animal hybrid embryos, despite a moratorium on funding from the National Institutes of Health.

Pablo Ross, a reproductive biologist from the University of California, Davis, has been working with a research team to implant human induced pluripotent cells in pig embryos, with the hope of growing human organs in developing porcine fetuses.

Ross has availed himself of alternative funding sources in the wake of the NIH’s decision last September to withhold funding until further study was done into the ethics of chimera experimentation.

"We're not trying to make a chimera just because we want to see some kind of monstrous creature," Ross told NPR. "We're doing this for a biomedical purpose."

After injecting human cells into the pig embryos, Ross and his team implant the embryo in a pig uterus, and allow it to grow for 28 days until they remove it again for dissection.

Importantly, Ross’s team is not the only one to have continued research following the moratorium. At the beginning of this year, it was revealed that scientists at the Salk Institute in California and the University of Minnesota had created hybrid embryos with the aim of growing human organs inside farm animals such as sheep and pigs.

Some bioethicists are gravely concerned about the creation of chimera embryos. "You're getting into unsettling ground that I think is damaging to our sense of humanity," Stuart Newman, a professor of cell biology and anatomy at the New York Medical College, told NPR.

"If you have pigs with partly human brains you would have animals that might actually have consciousness like a human," Newman says. "It might have human-type needs. We don't really know."

Research into chimera embryos is still technically legal in the US. It is also legal in the UK, with the Home Office releasing new guidelines last February that would allow for research into the “huge potential” of chimera embryos, while still providing a “robust ethical and regulatory framework”. 

As another presidential bioethics commission finishes up, A US computational scientist has suggested the next US president should create a ‘technoethics commission’. 

Daniel N. Rockmore, professor of in the Department of Mathematics, Computational Science, and Computer Science at Dartmouth College, recently published an article in The Conversation advocating for the establishment of clear “social norms” for digital technologies “through a high-profile, public, collaborative process.”

Rockmore, while not wishing to engage in scaremongering, believes that many are too ready to embrace the convenience of new computer technologies without considering the potential dangers:

“…the fact remains that we are thoughtlessly deploying technologies with little concern for, or debate around, their context and implications for society.”

He suggests that digital technologies have the potential to profoundly effect the ‘human condition’, and that a commission could be a value platform in which to discuss such risks:

“…surely questions around topics like wearables, privacy, transparency, information ownership and access, workplace transformation, and the attendant implications for self-definition, self-improvement and human interaction are at the foundation of any consideration of the human condition.”

“…a commission with representation from a range of constituencies, engaged in open conversation, might serve to illuminate the various interests and concerns.”

Late last month Nature published an editorial expressing concerns about the unregulated development of artificial intelligence technology. The journal wrote, “…it is crucial that progress in technology is matched by solid, well-funded research to anticipate the scenarios it could bring about, and to study possible political and economic reforms that will allow those usurped by machinery to contribute to society.”

Improbable as it may seem, an Italian neurosurgeon plans to transplant a head within the near future. Sergio Canavero has received worldwide publicity with his solution for degenerative diseases like ALS or for patients whose bodies are riddled with cancer. Last year a 30-year-old Russian IT worker with a crippling muscle-wasting disease volunteered for the operation when it become feasible.

Assuming, however, that the operation is successful, who will the person be? The person who once owned the head, or the person who once owned the body? Neither, according to an article in the journal Neuroethics.

We maintain that embodiment is central to personal identity and a radical alteration of the body will also radically alter the person, making her a different person. Consequently, a human head transplant will result in an individual partly continuous with the head/brain donor (in terms of connected memories and mental events), and partly continuous with the body donor (in terms of the inputs and regulatory patterns afforded by the structure and functions of the nervous system, and the self-image of this new embodiment). We conclude that the resultant person would be a new person different from both the individual whose head was transplanted and the one to whose body the “new” head is attached.

While the possibility of success in such an operation is extremely remote, the authors warn that it would be “ imprudent to be unprepared for those neuroscientific developments that can, and likely will occur in the near future”. 

According to an exclusive report in the New York Times, 150 scientists, lawyers and entrepreneurs gathered behind closed doors at Harvard earlier this month to discuss creating a synthetic human genome.

This is scientifically and ethically controversial because it could lead to the creation of humans without parents, genetically-engineered humans or copies of existing people.

Although details of the project are secret, the organiser seems to be Dr George Church, of Harvard Medical School, a colourful geneticist who has proposed creating Neanderthal humans based on ancient fragments of their DNA. The NYTimes says that a primary goal of the meeting was to  “synthesize a complete human genome in a cell line within a period of 10 years.”

Drew Endy, of Stanford University, and Laurie Zoloth, a bioethicist at Northwestern University, were highly critical of the secrecy surrounding the meeting in the magazine Cosmos.

We note that the narrative of creation of the human is the central narrative for many religious communities. To create a human genome from scratch would be an enormous moral gesture whose consequences should not be framed initially on the advice of lawyers and regulators alone.

The perspectives of others including self-identified theologians, philosophers, and ethicists from a variety of traditions should be sought out from the very beginning. Critical voices representing civil society, who have long been sceptical of synthetic biology’s claims, should also be included. 

The creation of new human life is one of the last human-associated processes that has not yet been industrialised or fully commodified. It remains an act of faith, joy, and hope.

Discussions to synthesise, for the first time, a human genome should not occur in closed rooms.

A US doctor has voiced grave concern about government inaction on increasing suicide rates in the country.

A report released late last month from the National Center for Health Statistics documented a sobering set of statistics that indicate that the suicide rate has increased during the period 1999-2014, particularly in selected demographic groups. 

The average percent increase in the age-adjusted suicide rate was about 1% per year from 1999 through 2006, which increased to 2% from 2006 to 2014. From 1999 through 2014, the percent increase in age-adjusted suicide was greater for females (a 45% increase) than males, who had a 16% increase. The suicide rate for females aged 10-14 years had the largest percent increase, a 200% increase.  

Speaking to MedScape, Columbia University psychiatrist Jeffrey A. Lieberman criticized the lack of funding for research into suicide prevention:

it's hard to understand the disconnect between the amount of resources that we have and those that are being allocated to studying them and providing care…It's hard to understand why these rates, which are really the tips of the iceberg of an overall chronically failed mental healthcare policy in this country, have not risen to the level of a national emergency, like Zika virus, Ebola, or AIDS years before.

Lieberman speculated about the possible reasons for the lack of funding:

I can only think that the reason is that there is a stigma attached to mental illness. It relates to drug abuse and the conflation of things that are not medical conditions and may relate to failings in moral character or behaviors that are sinful.

Lieberman also gestured toward the need for tighter gun laws – a comment that was very timely. Another study, released on Friday, observed a correlation between States with liberal gun laws and increased suicide rates. 

Researchers from Australia and the UK have called for greater attention to be paid to ‘spiritual care’ in the treatment of elderly patients. 

‘Spiritual care’ – care for, roughly speaking, the sense of identity, meaning, purpose and self-value of a patient – has been receiving increased attention in medical literature and clinical practice. Healthcare professionals are now calling on governments to reform ‘utilitarian’ healthcare systems to accommodate for the provision of therapies and services associated with spiritual care.

Writing for The Conversation, psychiatrists John Wattis and Stephen Curran of the University of Huddersfield discussed the need for clinicians to provide holistic treatment for elderly patients:

“The technical and the interpersonal aspects of clinical care should go together. Being prepared to assess spiritual need and deal with it – or signpost the patient to those who can help – should be part of good medical practice.”

They suggested that medical practitioners are increasingly prevented from providing adequate spiritual care to patients due to an obsession with efficiency:

“At the moment health and social care are under enormous pressure to become ever more “efficient”. Time spent with a patient or client is easy to measure – but the quality of the care offered may be reduced if workers are too rushed and stressed…We need a health and social care system that is motivated by a spirit of compassion and not by a spirit of fear…Human beings should not be treated as though they are machines and that mechanical repair is all that is needed.”

University of Melbourne aged care researchers Colleen Doyle and David Jackson expressed similar concerns. Doyle and Jackson criticised the often pragmatic approach to patient treatment in US, UK and Australian hospitals:

“Our reductionist health care model is not set up to support people in this way. Slowing down to address existential questions does not easily reconcile with frontline staff’s poverty of time…

They lauded new guidelines developed in Australia for the provision of adequate spiritual care: 

“…the development of new spiritual care guidelines brings us one step closer to supporting a meaningful existence right up to death.” 

There has been growing interest among ethicists in the theme of vulnerability. Some have gone as far as to suggest that vulnerability could serve as a new principle in bioethics. In a recent edition of the journal Theoretical Medicine and Bioethics, a number of leading bioethicists explored the topic of ‘human vulnerability in medical contexts’. This recent journal edition – a first among any of the leading bioethics journals –provides significant insight into the notion of vulnerability and its relevance to contemporary clinical practice. Xavier Symons, the deputy editor of Bioedge, recently spoke with guest editor Stephen Matthews about the key themes discussed.

Stephen Matthews is a senior research fellow at the Plunkett Centre for Ethics and a member of the Centre for Moral Philosophy and Applied Ethics at Australian Catholic University. Steve co-edited the special edition with Bernadette Tobin, Director of the Plunkett Centre for Ethics.   

******

Xavier Symons: You contend that vulnerability need not always be seen as “an obstacle or pathology to be removed”. Do you think this idea is relevant to the treatment vs. enhancement distinction in medicine? 

Steve Matthews: Yes, it’s absolutely relevant. An implicit assumption of those whose moral position is quite permissive of the technologies of human enhancement is a kind of perfectionism, or at least a maximising kind of attitude that can tend to swamp moral contemplation regarding vulnerable traits, the possession of which is not undesirable.

This is the idea expressed in John Quilter’s very thoughtful piece, and I take it that something like this is being expressed for the medical context in the article by Wendy Rogers and Mary Walker.

Actually there is a background fundamental question to all of this and it’s about whether certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. If we think there are such traits, this would inform the treatment vs enhancement question from the outset. It may be that we possess such traits and we should be concerned not to enhance ourselves to eliminate them. It may be, also, that we should not be jumping in to treatment occasioned by the slightest deviation from the path of a happy life.

We mention in the introduction the case of grief. Those who have experienced a period of grieving know that it can involve an extremely unhappy time, very disruptive and even destructive. Nevertheless there are strong arguments for thinking this is something that marks the value of the connections we had, and not something to be eliminated.

But let’s not be too glib about this. If there are such traits it does require a philosophical defence to state what they are and to understand the extent to which such (not undesirable) vulnerability should be retained. In the case of grief, this can tip over into a state of extraordinary dysfunction and pathology, in which case, a trip to one’s physician is obviously in order.

XS: How important do you think trust – which I take is archetypal kind of vulnerability in human life – is for a well-functioning healthcare system? 

Matthews: This is a very good question. Without trust the compliance costs of any human institution, where relationships are governed by rules, would be prohibitive. For a defining feature of trust is that I may rely on a trusted party without the need to monitor them constantly, or even at all. Trust is highly enabling for a well-functioning healthcare system then, just measured in the banal terms of cost as just stated.

But you’re right, if A trusts B, then A is made vulnerable to B in case B turns out to be unreliable or untrustworthy. The inference is then very clear: systems, including the healthcare system, conceptually depend on levels of vulnerability. The vulnerability goes both ways. Patients are just the obvious case, and not even the best system of informed consent can really compensate for the fact that the doctor-patient relation is one of imbalance: an epistemic imbalance and a power imbalance.

But as both Justin Oakley and Mayes et al argue, the medical fraternity, in various ways and in virtue of their positions of responsibility are vulnerable in so far as they must trust each other and the systems they operate within.

XS: Much of the role of palliative care involves helping ailing patients to come to terms with their vulnerability. Are there other areas of medicine where vulnerability is particularly important? 

Matthews: The most vulnerable patients are those whose (autonomy) competence is diminished. The limit case of this is a severely injured person who comes into a hospital unconscious and who cannot be identified. No one can speak on their behalf, and so initially healthcare workers must make, and take responsibility for, all decisions pertaining to their care.

Other groups include dementia patients, the very young, or those with a mental illness. Very depressed patients, for instance, are known to have highly limited capacities in the estimation of risk and benefit and what should be done to assist them.

Another vulnerable group is those with drug dependence issues. The United States is currently going through an opiates epidemic. In 2014, there were 47,000 overdose deaths from prescription and street opiates there. These patients are particularly vulnerable for two reasons. Often medical staff have little understanding of addiction and little sympathy for drug dependent persons who they blame. Secondly, addiction is a chronic condition, which means that over time the drug dependent person becomes resigned to their drug dependent status, and this leads to lost hope, and a sense of ineffectiveness.

Chronic conditions such as this are a great burden on healthcare systems and represent an important challenge to medical staff who may not view such people as the vulnerable types they really are.

XS: Australia has a relatively strong social security net. Is ‘vulnerability’ a justification for a universal healthcare system? 

Matthews: Good question again. The conception of a government-supported healthcare system as providing a safety net I think frames the idea of universal healthcare incorrectly. Such a conception runs the risk of making care available only to those who need the net – those vulnerable types who have fallen, and but for the net, would crash to the ground.

And this leaves open an argument that healthcare should be made available only for those whose vulnerability is unpredicted. Then we enter a range of familiar debates about whether, for instance, smokers or risk takers generally deserve the safety net – paid for by all – when other more responsible people are not smokers, risk takers etc. That is a dangerous debate, as we know, and only leads to adversaries digging themselves into positions that tend not to shift.

Now, having said that, I think there is wider philosophical conception of vulnerability – wider than the folk idea that excludes (say) smokers – that could be used to justify the establishment and maintenance of a universal healthcare system. Variations on this conception are outlined in the introduction to the special issue.

On this view, human vulnerability is fundamental, pervasive, shared and possessed by all, independently of perceived power imbalances. Of course there are special cases as well, and obviously some groups are more vulnerable than others, but on the wider conception, no one, as it were, escapes.

Under that view, we can run a line of argument which says that a universal healthcare system is rational because vulnerability is a universally held human trait. On this view the idea of a safety net is almost trivialised, and that is because the understanding is that a healthcare system is a rational response to recognising a fact about our natures, our natures as embodied, social, interdependent creatures.

XS: One theorist who wasn’t mentioned in your introduction to the issue was Alasdair MacIntyre. To what extent do you think MacIntyre’s writings on human dependency overlap with the ideas advanced in this issue of Theoretical Medicine? 

Matthews: It would take us beyond the scope of this interview to deal in depth with MacIntyre’s writings. I can at least say this much: In Dependent Rational Animals MacIntyre asserts that “an ethics independent of biology” is impossible. He argues that vulnerability and dependency are constants in the lives of human beings, regardless of what stage of life they are at. This idea is similar to what I said in answer to your first question.

Many philosophers claim that certain vulnerable traits we have as subjects are desirable to our moral identities as human beings. MacIntyre is one such philosopher. According to MacIntyre, to develop our capacity as moral agents means to achieve a certain measure of independence, but this should not come at the expense of acknowledging our constant and continued dependence. In one sense, such an acknowledgement is constitutive of moral development. Insofar as dependency is very closely related to vulnerability, MacIntyre’s ideas overlap significantly with the themes of this journal edition.

Is your privacy safe on the internet? How do you know? Now that people store medical records in the cloud and record much of their lives on social media, privacy is essential.

But as the latest scandal shows, privacy is always at risk.

A group of Danish researchers from Aarhus University has just released a data set of 70,000 subscribers to the online dating site OkCupid. They obtained them by scraping (harvesting) the data of publicly available profiles. However, they did it without seeking permission from the website or asking for the consent of the subscribers.

According to Vox, the data, which was collected between November 2014 and March 2015, includes user names, ages, gender, religion, and personality traits, as well as answers to the highly personal questions the site asks to help match potential mates. The users come from all over the world.

The data was uploaded onto the Open Science Framework, a site which warehouses Big Data and makes it freely available to social science researchers.

Harvesting the personal details of subscribers violates a fundamental rule of social science research: people must give informed consent. But the lead researcher, a graduate student named Emil Kirkegaard, sneered at critics of his methodology.

Professional researchers were outraged. Oliver Keyes, a social computing researcher, wrote on his blog:

this is without a doubt one of the most grossly unprofessional, unethical and reprehensible data releases I have ever seen.

There are two reasons for that. The first is very simple; Kirkegaard never asked anyone. He didn't ask OKCupid, he didn't ask the users covered by the dataset - he simply said 'this is public so people should expect it's going to be released'.

This is bunkum. A fundamental underpinning of ethical and principled research - which is not just an ideal but a requirement in many nations and in many fields - is informed consent. The people you are studying or using as a source should know that you are doing so and why you are doing so.

Although no names are associated with the data, it has not been anonymized. It will be possible to identify the user from other information in the dataset.

The ethics of this escapade seem simple enough: it’s not ethical. Kierkegaard commented in an on-line journal:

Some may object to the ethics of gathering and releasing this data. However, all the data found in the dataset are or were already publicly available, so releasing this dataset merely presents it in a more useful form.

However, as Michael Zimmer points out in Wired, “The most important, and often least understood, concern is that even if someone knowingly shares a single piece of information, big data analysis can publicize and amplify it in a way the person never intended or agreed.”

In response to the rapid development of scientific research and mounting ethical concerns, The International Society for Stem Cell Research (ISSCR) has released updated guidelines for stem cell research and the development of new clinical therapies. 

The new guidelines deal with a number of issues unaddressed in previous ISSCR documents, including genetic experimentation on human embryos, embryo research oversight processes, and the use of “undue financial inducement” to entice women to donate their eggs for research pruposes.

The full ISSCR document can be found here, and summary here. 

“The field of stem cell research is growing at a rapid pace, with scientists and physicians developing new therapies that can help patients around the world who suffer from a wide variety of conditions,” said Sean J. Morrison, Ph.D., ISSCR president and director of the Children’s Medical Center Research Institute at UT Southwestern. “These guidelines are essential to protect the integrity of the research and to assure that stem cell treatments are safe and effective,” he said. 

Writing in Nature, a group of several international of bioethicists commended the ISSCR for the broad-reaching new guidelines.

“The ISSCR guidelines continue the tradition of scientists creating professional standards for the responsible conduct of research. They speak most directly to those engaged in stem-cell research but are also relevant to regulators, journal editors, press officers, physicians, funding bodies and patients. Such a global effort to establish research standards offers a model for other contentious research arenas — from artificial intelligence to climate engineering.” 

A woman in India thought to be in her 70s has given birth to a baby boy, sparking outcry in the country and drawing international media attention. Daljinder Kaur gave birth to her son Arman Singh last month, after receiving treatment from a rogue fertility clinic in northern state of Haryana.

The woman’s son is healthy, and Daljinder says she is now a happy mother. “God heard our prayers. My life feels complete now,” she told The Guardian.

Yet most fertility specialists say it was unethical and reckless to provide the woman with IVF treatment. “It is outrageous,” Hrishikesh D. Pai, the former president of the Indian Society of Assisted Reproduction, told The Australian. “It is inappropriate to do it and it is not in the best interests of the parents or the unborn child to do it.”

Others see controversies like these as indicative of broader regulatory problems in the Indian medical system.

“The whole world is looking at India and saying we can’t regulate ourselves,” Dr Narendra Malhotra, head of the Indian Society for Assisted Reproduction, told the Guardian. “We put forward guidelines for ART (Assisted Reproductive Technology) clinics seven years ago. No government has taken them seriously, and a bill has been pending for seven years.”

There are also concerns that the child will be an orphan in just a few years. “Just because we can do something doesn’t mean we should do it, just to make world records”, Dr. Malhotra said. 

Limb surgery is becoming an increasingly common procedure  among middle-class Indians looking to improve their future social prospects. The highly controversial operation is being sought out by both local and international clients, and is just one among the many cosmetic surgeries driving India’s US$3 billion medical tourism industry.

Height is considered attractive in India, and can have significant social ramifications for marriage and career prospects.

The procedure, both protracted and complex, involves doctors breaking the legs of patients and applying braces to the limbs that alters the length of the healing bone. According to Dr. Amir Sarin, a cosmetic surgeon based in Delhi, many junior specialists are performing the procedure with little or no prior experience.

“This is one of the most difficult cosmetic surgeries to perform, and people are doing it after just one or two months’ fellowship, following a doctor who is probably experimenting himself. There are no colleges, no proper training, nothing.”

The operation was first pioneered by a Polish man named Gavriil Ilizarov in the 1950s in a small town called Kurgan in Siberia. Ilizarov successfully performed limb surgery on accident victims and people born with one limb shorter than the other. The procedure has now become a procedure for social advancement. 

In 2010 the New York City Department of Health launched a grisly 30-second TV ad (above) aimed at reducing the incidence of HIV amongst men who have sex with men. It showed angst-ridden young men reacting to the words osteoporosis, dementia, anal cancer.

The campaign was extremely controversial in the gay community. Some hated it: “it’s sadistic and bullying,” said UK-based journalist Gus Cairns. But gay rights activist Larry Kramer loved it: “these nyc department of health public service announcements are in fact not strong enough!”

These comments represent the two extremes of debate over fear-based public health campaigns. Bioethicists, whose work is supported by the pillar of autonomy, criticise them as stigmatising; public health ethicists, who often take a more utilitarian approach, believe that fear saves lives by motivating people to change their behaviour. From the 1950s to the 1970s, the anti-stigma crowd had had the upper hand. The consensus was that fear did not work.

In the 1980s the question became urgent with the HIV/AIDS epidemic. At first there was bitter resistance to using fear-based advertising to encourage young gays to use condoms. However, deliberately stigmatising warnings have been responsible for declines in the incidence of smoking since the mid-1950s.

An on-line first article in the Journal of Medical Ethics this week asked whether it is time to change tack and recognise that fear does “work”. Campaigns to decrease consumption of cigarettes and soft drinks by using cringe-inducing images appear to have had an impact. Why not HIV?   

“[a meta-analysis in 2015] concluded that fear appeals were effective at positively influencing attitudes, intentions and behaviour; there were very few circumstances under which they were not effective and there were no identifiable circumstances under which they backfired and led to undesirable outcomes…

[T]he long and sometimes bitter debate about the efficacy of fear-based campaigns may be drawing to a close. In thinking about fear-based campaigns in the future, it will be increasingly necessary to ask: not can we, but should we?...

To acknowledge that fear-based campaigns have a role to play is not the equivalent of endorsing efforts that seek to shatter a sense of self. To tug at the gut is not the equivalent of endorsing efforts that seek ‘a total destruction of the individual's status in organized society’.

What about the danger of stigma? The authors respond that fear-based campaigns do not necessarily stigmatise people. In fact they can increase their autonomy as long as they are not deceptive.

Unlike the now dominant perspective within bioethics, a central ethical claim for fear-based efforts was that despite virulent arguments to the contrary, they may in fact enhance autonomous choice… But the justification of appeals to fear and emotion should not be confused with the reliance on outright deception and exaggeration of the risks posed to public health.

Pharmaceutical giant Pfizer has declared that it will not provide drugs to correctional institutions for executions. The announcement comes after its takeover last year of Hospira Inc, a company which manufactured several drugs which were being used in capital punishment.

A revised policy statement, posted on its website yesterday, says:

Pfizer makes its products to enhance and save the lives of the patients we serve. Consistent with these values, Pfizer strongly objects to the use of its products as lethal injections for capital punishment.

Pfizer’s new policy will not stop capital punishment in the US. But it will make it more difficult for states where it is legal to access the drugs. Furthermore, it is a public relations coup for anti-death penalty campaigners. Maya Foa, of Reprieve, a UK lobby group, told the media:

“Pfizer’s actions cement the pharmaceutical industry’s opposition to the misuse of medicines. Over twenty-five global pharmaceutical companies have taken action to prevent the misuse of their medicines in executions; with Pfizer’s announcement, this will mean that all FDA-approved manufacturers of all execution drugs have spoken out against the misuse of medicines in lethal injections and taken steps to prevent it.”

Pfizer’s previous policy statement (cached) dealt with the supply of drugs for both capital punishment and euthanasia. The revised policy mentions only the former. It is not clear whether it will continue to supply drugs for euthanasia in the Netherlands and Belgium.  

CRISPR and other gene-editing technologies hold great promise for treating disease. However, they also provoke significant ethical concerns, especially about germline modification and the consequences of altering the genetic heritage of future generations.

On April 28 and 29, two conferences were held in Paris, one organised by European scientists and the other by Americans. They were attended by the world’s leading figures in stem cell research and ethics for a discussion of regulation, governance, and ethical issues surrounding human gene-editing research.

Caroline Simons, an Irish lawyer, reported on the proceedings in a guest post on The Niche, the blog of Paul Knoepfler’s stem cell lab. It’s a very useful summary of the status quo.

1.  Germline gene editing technologies are not ready for clinical application in humans.

2.  No country has regulated specifically for these technologies, but some consider that their regulations would encompass, or at least not prohibit, somatic gene editing.

3.  Most countries prohibit germline gene editing.

4.  There is no support for the clinical application of germline gene editing, but there is consensus that basic research should continue.

5.  There is consensus that research and, when safety and efficacy concerns are satisfied, that clinical trials of somatic gene editing should continue.

6.  There is no common understanding of ‘enhancement’ and no consensus that editing to achieve it should be permitted, even in somatic cells.

7.  The UK is the only country to permit mitochondrial replacement techniques (MRT), which will result in germline alteration. Neither the US nor China consider it prudent to approve MRT technology at this time.

8.  There is no consensus on the status of the human embryo (or even on what is an embryo), no consensus that embryos may be created for research or that they ought be available for research beyond the fourteenth day.

9.  The scientific evidence presented in the session which considered potential applications for germline editing did not demonstrate any ‘high unmet medical need’ for germline editing at this time. In fact, Dr. Clevers couldn’t think of any situation where using CRISPR/Cas9 on an embryo would be feasible.

10.There is consensus that public discussion of gene editing technology is urgently needed and that ‘broad, informed consent’ from the public is necessary before any clinical application of gene editing in humans.

“We are born without choosing to be. Should we have to die in the same manner? Isn’t it a human glory to refuse to accept a certain fate?” -- Zero K 

Immortality through cryonics is the central plot device in the latest novel by Don De Lillo, one of America’s best writers. Zero K takes the reader to a remote secret compound called “the Convergence” where bodies are frozen until a technology is developed to awaken them.

A billionaire takes his dying wife there to be frozen and has to decide whether he will join her, even though he is healthy, or whether he will live on, battling against existential doubt and a loveless life. The story is narrated by his son who is sceptical of the promises of the cult of frozen immortality and returns to New York in the second half of the novel.

The Convergence is a elaborate pastiche of the real-life  Alcor Life Extension Foundation, a facility in Scottsdale, Arizona, where 144 heads and bodies along with a few dozen pets are currently stored in liquid nitrogen awaiting resurrection.

The setting of his 16th novel gives De Lillo abundant opportunity for his signature reflections on life, death, commercialism, branding, marriage and the loneliness and alienation of post-modern living. As most reviewers have pointed out, the 79-year-old author is reflecting on his own mortality as well. 

Policy analysts in the US and UK are calling for an augmentation of the decades-old 14-day embryo experimentation rule – a regulation that requires scientists to terminate any embryo in vitro before it reaches two weeks of development.

The calls for change have come in the wake of the publication of ground-breaking embryology research in Nature journals this week.

In two separate studies scientists have reported keeping embryos alive, healthy and developing up until the 14-day mark. In both studies the embryos grew autonomously and began processes that lead to organ development –a major improvement on any previous in vitro experiment.  

University of Manchester bioethicist John Harris argued in The Guardian that A switch to a 21-day deadline would allow scientists to better understand miscarriages and the possibilities of using stem cells to treat diseases:

“The overwhelming consensus of scientific opinion, as of this week, is that much of considerable scientific and therapeutic importance can be learned by extending the 14-day limit for a further week, to 21 days…”.

Harris suggested that the original rule was based on an arcane and outmoded value system. 

The Nuffield Council on Bioethics published a press release indicating that they are currently considering whether to advocate for a change in the law. The Council is set to hold a colloquium later this year bringing together “invited participants with a range of perspectives on embryo research in order to evaluate whether, after 25 years, there may be persuasive reasons to review this legal limit”.

A group of influential US ethicists writing in Nature this week called for both clarification and re-evaluation of existing regulations:

“Now that the culturing of human embryos beyond 14 days seems feasible, more clarity as to how the rule applies to different types of embryo research in different jurisdictions is crucial. Moreover, in light of the evolving science and its potential benefits, it is important that regulators and concerned citizens reflect on the nature of the restriction and re-evaluate its pros and cons.”

Reverend Tadeusz Pacholczyk of the National Catholic Bioethics Center offered an alternatively perspective and suggested that the 14-day-rule was flawed to begin with.  The arbitrary rule only paid “lip service to the moral status of the human embryo”, Pacholczyk said. 

The number of euthanasia cases in the Netherlands continues to rise steadily. According to the latest statistics released by the government, in 2015 there were 147,010 deaths in the country. Of these 5,516 were reported to be euthanasia or assisted suicide (only 208 cases). This is rise of 4% over the figures for 2014.

Euthanasia is only available in the Netherlands if there is unbearable suffering. In most cases, the reported cause of suffering was cancer.

The most intriguing feature of the statistics was the steep rise in euthanasia for end-stage psychiatric disorders (56, up from 41 in 2014) and dementia (109, up from 81).

According to the Dutch protocols for euthanasia, each doctor is supposed to lodge a report with one of the five regional review committees. In 4 out of the 5,516 cases, the committees detected some irregularities, which will be investigated further.

One interesting feature of the statistics are 17 anonymized case studies (in Dutch) which are intended to demonstrate that doctors in the Netherlands take their due-diligence requirements very seriously. Verdict 2015-64, for instance, describes the case of a 20-30-year-old woman suffering from a post-traumatic stress disorder and refractory anorexia nervosa which began 15 years before after sexual abuse. The required two doctors concurred that she had made a voluntary and well-considered request, that there was no other reasonable solution, and that she was experiencing hopeless and unbearable suffering. 

The number of deaths from opioid overdoses has skyrocketed in the US, but public health executives see a big positive in the tragedy – increased organ donation.

Healthcare analysts have written extensively on the ramifications of the US  opioid abuse epidemic – an epidemic that, according to figures released by the Centers for National Disease Control and Prevention, has led to a 14% increase in deaths from opioid overdose in the space of a year (2013-2014).

The most recent topic of discussion has been the spike in organ donations from donors who have died from overdoses.

According to data gathered by the United Network for Organ Sharing (UNOS), the number of donors nationwide who died of overdoses rose by nearly 270 percent – from 230 to 848 – between 2006 and 2015. In New England alone, the number rose from eight to 54 – or by 575 percent – over the last five years, according to statistics compiled by the New England Organ Bank.

"It's a huge increase," says Alexandra K. Glazier, the New England Organ Bank's president and chief executive officer.

Almost 80,000 people in the US are actively awaiting organ donation, and it is estimated that around 22 people on the transplant waiting list die each day.

Some, however, are concerned about the quality of the tissue being donated by deceased addicts. "We've been able to place them in New England very successfully," said Helen M. Nelson, the New England Organ Bank's senior vice president of organ donation services. "That may not be true in other parts of the country."

In February this year, the US Director of Intelligence James R. Clapper named gene-editing technology as “a potential weapon of mass destruction”. Clapper told US Congress that rouge states might use gene-editing techniques to manufacture biological weapons. 

“In countries with different regulatory or ethical standards, it increases the risk of the creation of potentially harmful biological agents”.

The remarks sparked discussion among bioethicists about the possibility of misuse of gene-editing techniques. Here’s what a few had to say.

University of California San Francisco bioethics professor Barbara Koenig:

“Those individuals who don't follow the rules would essentially be ostracized. But I understand how you could be concerned that self-regulation is enough.”

Columbia University bioethicist Robert Klitzman:

“I think that this is a very powerful technology…I think as a result that there are things that need to be done that have not yet been talked about.”

“The infectious agent responsible for bubonic plague, if altered through Crispr, could potentially be used as a WMD. Currently, we have effective treatment against it. But if it were altered, it could potentially become resistant to these treatments and thus be deadly.”

Edinburgh University bioethicist Sarah Chan told The Guardian technology that could make diseases more infectious and dangerous has existed for decades, as have the questions around it.

“Some of the fears and concerns surrounding genome editing technology are, if not overblown, perhaps misdirected.”

Piers Millet, an expert on bioweapons at the Woodrow Wilson Center in Washington, D.C., said Clapper’s singling out of gene editing on the WMD list was “a surprise,” since making a bioweapon—say, an extra-virulent form of anthrax—still requires mastery of a “wide raft of technologies.”

Eve of Destruction?

Human beings are more likely to die in a mass extinction event than a car crash, according to a new report released by the UK based Global Challenges Foundation.  The report – a document intended to provide international policy makers with an executive summary of contemporary existential threats for humanity – suggests that there is a 9.5% chance that a human extinction will occur in the next 100 years (the danger of dying in a car crash is below 2%).

The authors list among the most serious and likely threats over the next 5 years a ‘natural pandemic’, an ‘engineered pandemic’, and ‘nuclear war’.

While discussing the much-feared threat of global climate change, the report also places significance emphasis on catastrophic risks emerging from technology:

“Emerging technologies promise sig­nificant benefits, but a handful could also create unprecedented risks to civilization and the biosphere alike. Biotechnology could enable the creation of pathogens far more dam­aging than those found in nature, while in the longer run, artificial intelligence could cause massive disruption.”

The Global Catastrophic Risks 2016 report is a join project involving three centres focusing on the study of existential risk: The Global Challenges Foundation, The Global Priorities Project, and Oxford University’s Future of Humanity Institute.

“We don’t expect any of the events that we describe to happen in any 10-year period. They might—but, on balance, they probably won’t,” Sebastian Farquhar, the director of the Global Priorities Project, told The Atlantic. “But there’s lots of events that we think are unlikely that we still prepare for.”

A government report has backed calls for an international treaty on surrogacy and for uniform legislation within Australia banning commercial surrogacy.

A Senate committee tabled its conclusions this week. In a nutshell, it backs altruistic surrogacy, but not commercial surrogacy. In a society where marriage and the family are changing rapidly, with many children lacking genetic connections with parents, surrogacy can be a solution for infertile couples, it contends.

However, the report left a number of issues in the too-hard basket. The include changing birth certificates to include all people who could qualify as parents – genetic, gestational and intended and making use of commercial surrogates overseas illegal.

Research shows that about 250 children from commercial surrogacy arrangements are brought back to Australia every year. Australia is powerless to stop this, argues the committee. The best the government can do is to give advice about the dangers of offshore arrangements and the possibility of abusing the human rights of the women involved.

Everyone agrees that fundamental principle of surrogacy must be the “best interests of the child”. However, there is a stark division on what those are. Some people told the committee that surrogacy in any form could never be in the best interests of the child because it creates confusion about his or her identity and is inconsistent with the United Nations Convention of the Rights of the Child. Others declared that it could be consistent. The committee sat on the fence.

Another issue is reimbursement for “reasonable expenses” for altruistic surrogates. The committee backed “appropriate reimbursement”. 

The issue of harvesting organs from political prisoners in China to supply the country’s more than 160 transplant centres is not just controversial, but explosive.

So it is a bit odd that an article in the Journal of Medical Ethics published online last year by two authors from Macau and one from Australia had to be amended extensively.

After the publication of “China to halt using executed prisoners’ organs for transplants: a step in the right direction in medical ethics”, what was described as “a new law” became a “regulation” and a “guideline”. Consent from “the prisoners themselves or their family members” became consent only from the prisoners. And a crucial reference changed from an official government document to a government press release.  

Was this due to carelessness, or inexperience, or, as a response in the JME suggests, “smoke and mirrors”? The bitterly critical article was written by six authors associated with Doctors Against Forced Organ Harvesting (DAFOH), a group which supports the Falun Gong, a persecuted movement in China. Thousands of its members are said to be political prisoners there.

The government has acknowledged (after years of denying it) that organs were being taken from executed prisoners. A recent DAFOH report makes a strong case that the mysterious gap between the number of executions in China and the number of transplanted organs was made up by harvesting the organs of Falun Gong members. However, the Chinese government is notoriously secretive and there is no smoking gun to prove the allegations.

The DAFOH authors of the JME article are calling for support from the international community:  

What is ethically disturbing is the almost complete silence on this issue. Clearly, if China indeed murders innocent citizens for their organs, it would seek to conceal the crime. But why does the international community, including transplant doctors, medical ethicists and journal editors, remain complicit in this silence? This may in part be due to obfuscation about the term ‘executed prisoners’, which is taken by many to mean prisoners executed after a judicial process. In reality, in China, ‘executed prisoner’ means the killing of a person under detention by the state, irrespective of his/her criminal status.

Despite some sceptics, an Indian company working with a US biotech company has received a green light from the US clinical trials authority to test a protocol for reversing brain death.

Dr Ira Pastor, the CEO of the American biologics company Bioquark, believes that this could be a breakthrough technology, “another step towards the eventual reversal of death in our lifetime”.

The Reanima project has received approval to experiment on 20 subjects diagnosed with brain death at Anupam Hospital in Rudrapur, a small city about 250 km east of New Delhi.

While it may seem implausible, Dr Pastor points out that some brain dead patients “can still circulate blood, digest food, excrete waste, balance hormones, grow, sexually mature, heal wounds, spike a fever, and gestate and deliver a baby”. He has studied the regenerative properties of amphibians and other animals and believes that it is possible to regenerate brain tissue “with the convergence of the disciplines of regenerative biology, cognitive neuroscience, and clinical resuscitation”.

In the experiment, peptides will be administered into the spinal cord daily via a pump, with stem cells given bi-weekly, over six weeks. "It is a long term vision of ours that a full recovery in such patients is a possibility,” says Dr Pastor.

Is ReAnima being over-ambitious in this proof-of-concept study? Dr Dean Burnett, a neuroscientist at the Cardiff University’s Centre for Medical Education, believes that it might be. He told the London Telegraph:

“While there have been numerous demonstrations in recent years that the human brain and nervous system may not be as fixed and irreparable as is typically assumed, the idea that brain death could be easily reversed seems very far-fetched, given our current abilities and understanding of neuroscience. Saving individual parts might be helpful but it's a long way from resurrecting a whole working brain, in a functional, undamaged state.”

What does the American public think about human germline enhancement? A survey of 17 polls taken over the 30 years published in the New England Journal of Medicine suggests that Americans support gene therapy for patients with serious diseases, but they oppose it in embryos or germ cells. The authors conclude: “Of course, public opinion could change over time as discussions of these issues continue to evolve and as more is learned about the implications and safety of gene-editing technologies.”

However, Pete Shanks, at the Center for Genetics and Society, in California, reaches a different conclusion from much the same information. The latest polls show that more than 80% of people surveyed thought that babies should not be genetically modified for increased intelligence or sporting ability. “These are, or should be, devastating numbers to anyone who thinks that the public supports human heritable genetic modification,” he concludes. 

The Dutch Health Minister, Edith Schippers, has earmarked almost 400,000 Euros for a study of whether to expand eligibility for euthanasia to children between 1 and 12. At the moment, children under 1 may be killed with the consent of their parents following criteria set out in the Groningen Protocols. Children older than 12 are already eligible.

After neighbouring Belgium passed legislation in 2014 enabling child euthanasia, doctors and activists in the Netherlands are keen to catch up.

The Dutch Paediatric Association (NVK) kicked off a debate on the topic last year. It strongly supports a change. At the moment euthanasia of a child between 2 and 12 is only possible by invoking the doctrine of “force majeure” in the Dutch criminal code, which means that the doctor feels compelled to do it as an emergency measure. But this still leaves him open to prosecution. The NVK believes that age is an arbitrary criterion and that euthanasia should be available for anyone with mental competence. Some children, even if they are under and 12 and desperately ill, are astonishingly rational.

A roundtable discussion at the Dutch Parliament amongst experts in medical care for children in January showed that there is a range of opinions on the topic, although most of the participants were broadly in favour of a change. The Royal Dutch Medical Association (KNMG) is in favour of studying the issue further.

Not all organisations at the roundtable wanted to amend the law. A Christian group, the NPV, pointed out that “the suffering of the parents should not be a justification for a request for termination of life of the child”. Their position was that “A society that does not protect its children loses its dignity. Let us commit to good palliative care and guidance to children - and their parents - in the last phase of life”.

A spokeswoman for the Dutch Association of Educationalists (NRC), Dr Miriam Vos, raised questions about what “hopeless and unendurable suffering”, the main criteria for euthanasia in the Netherlands, means for children. “Children younger than 12 rarely or never speak in terms of hopeless and unbearable suffering. Their verbal and nonverbal expressions may suggest this, but this is always interpreted by their doctor, parents and other health care workers.” 

Shakespeare may appear to be unimportant and irrelevant in bioethics. Yet the latest editorial published in The Lancet suggests the Bard is more significant for the discipline than some may think. 

“Shakespeare has appeared in 1200 Lancet publications… A keen observer of people, events, and ideas, Shakespeare excelled in the ability to distil their essence into characters and situations that remain recognisable today. In such contexts, familiarity with the human experience overpowers the unfamiliarity of language, and invites audiences to interpret the situation based on personal experience: be that as politician, sociologist, or clinician.” 

Shakespeare, say the Lancet's editors, was a playwright with a profound grasp on human morality:

“At their heart, Shakespeare's plays and poems explore humanity. Tales told with empathy about the struggles of human nature and passions; how all can be lost by poor choices or calamitous circumstance or, sometimes, gained by fortuitous external intervention. Just like the tales at the heart of health care.”

Boys should not be circumcised until they are old enough to choose for themselves, a British judge has suggested in ruling on custody of two sons of a Muslim man and his estranged wife.

Mrs Justice Roberts, of the Family Division, agreed with the British-born mother of the boys, aged 4 and 6. The Algerian-born husband argued that  "circumcision had both a religious and a social importance which overrode any slight risk which the procedure carried." He would feel devastated if his sons were not circumcised.  (The names of the people involved were not released.)

The judge’s reasoning echoes arguments made by some bioethicists that circumcision is an unjustifiable violation of a boy’s bodily integrity:

"First and foremost, this is a once and for all, irreversible procedure. There is no guarantee that these boys will wish to continue to observe the Muslim faith with the devotion demonstrated by their father although that may very well be their choice.

"They are still very young and there is no way of anticipating at this stage how the different influences in their respective parental homes will shape and guide their development over the coming years. There are risks, albeit small, associated with the surgery regardless of the expertise with which the operation is performed.

"There must be clear benefits which outweigh these risks which point towards circumcision at this point in time being in their best interests before I can sanction it as an appropriate course at this stage of their young lives."

The judge stated that she was not setting down a principle about whether Muslims should circumcise their children. 

"I am simply deferring that decision to the point where each of the boys themselves will make their individual choices once they have the maturity and insight to appreciate the consequences and longer term effects of the decisions which they reach.

"Part of that consideration will be any increase in the risks of surgery by the time they have reached puberty. I do not regard the delay between now and that point in time significantly to increase those risks. The safest point in time to have carried out the procedure has long since passed."

Francois Paulette says that Canada's new euthanasia law is not part of indigenous culture.     

As southern Canada prepares to roll out euthanasia after last year’s Supreme Court decision, the Dene, an aboriginal group of First Nation people, are awaiting it with fear.

Francois Paulette, the chair of Yellowknife's Stanton Territorial Health Authority Elders' Advisory Council, told CBC news that euthanasia conflicts with Aboriginal culture. "We don't play God," he said. "God is responsible for bringing us into this world, and taking our life. It is pretty straightforward.

Mr Paulette is asking the federal government to consult with indigenous people in drafting the new legislation.

The president of the Indigenous Physicians Association, Dr Alika Lafontaine, agrees. "The worst thing we can do is start to implement a program that is designed in the city and just assume that is going to work in our Indigenous communities," he says.

He is concerned that lower standards of care will be offered to remote indigenous communities if euthanasia is requested. It is possible, for instance, that registered nurses, rather than doctors, will provide the service.

Dr Carrie Bourassa, an indigenous health studies professor at the First Nations University of Canada, says that the new policy could be overwhelming for struggling communities. "For some communities it may not even be possible. When we're trying to deal with suicide and multiple loss in communities, is this even a conversation that communities are going to want to have?"

Suicide in remote communities is a serious problem in Canada.

Earlier this month the Canadian parliament held an emergency debate on Aboriginal suicides after 11 people, nine of them minors, attempted suicide in one weekend in Attawapiskat, a remote community of 2,000 in northern Ontario. The community leaders unanimously declared a state of emergency. Of the four health care workers in the community, none is trained in mental health. “It’s shocking that conditions like this continue to exist in this day and age in Canada,” says Grand Chief Alvin Fiddler, of the Nishnawbe Aski Nation, which represents First Nations in northern Ontario. 

Although many obstacles remain, genetic engineering is much closer to becoming a reality with the rapid development of CRISPR. On the horizon are both human enhancement and cures for genetic diseases. But one significant political obstacle is fear of altering the human genome. It is not just pro-life activists who object; a number of scientists also fret about the commercialisation of human life.

However, things could change. In the latest issue of The New Atlantis, Brendan Foht presents a “A Pro-Life Case for Therapeutic Gene Editing”. He acknowledges the risks of altering a person’s natural endowment, but points out that while most of the time somatic gene editing will be preferable to altering the genes of embryos, there will always be exceptions: 

most forms of Tay-Sachs disease, for instance, begin to manifest early in pregnancy and are generally fatal for the child before it reaches the age of five. In such cases, correcting mutations after a baby is born may not be an effective way to reverse developmental problems caused by the mutations. Editing the genes of embryos would presumably be more effective, though also more dangerous, than postnatal gene-editing, since it would affect a much greater proportion of the body’s cells and will do so from an earlier stage of development.

Some scientists contend that using pre-natal genetic diagnosis with IVF would be preferable to using gene therapy on an embryo. However, Foht points out that there are substantial ethical issues with this “conservative” approach:

preferring PGD over genetic therapy represents a troubling attitude toward people with disease and disability. In selecting embryos to destroy (or fetuses to abort), doctors and parents are making a judgment that the life of someone affected by a disease or disability is not worth living — implying that those individuals affected by the disease would have been better off if they had never been born.

To put it another way, the judgment implicit in using gene editing to modify a disease-causing gene is that it is better to live without that disease than to live with it; the judgment implicit in using prenatal abortion is that it is better to die than to live with the disease. When both are options, preferring selective destruction over gene editing amounts to a preference for killing over curing.

This is an approach which is sure to provoke intense controversy in the pro-life camp. Stay tuned. 

In a world first, the State of Kuwait will require all citizens and visitors to provide DNA samples to government authorities.

The new security measure, which was approved by the nation’s government in July 2015, mandates that all visitors must provide police with a DNA record (most likely in the form of a standard cheek swab) before they enter the country. 

Government officials say that the new requirement will be a very useful means of combatting crime, as it allows for the matching of DNA specimens from crime scenes with the DNA code of any member of the population.

“DNA tests have proven very effective over the past decade and have been used in solving many crimes by matching biological evidence collected from crime scenes with databases”, an anonymous official told the Kuwait Times.

Officials suggest that the samples will be stored securely and

The government intends to store the specimens of visitors, as well as that it will be hard for even lab staff to access sensitive identifying information about the source of the sample.

International NGO Human Rights Watch has stridently criticised the new legislation. In a statement released when the laws were first approved, Middle East director Sarah Leah Whitson said,

“Many measures could potentially be useful in protecting against terrorist attacks. I suppose videotaping every user of a public toilet could be useful too, but that kind of intrusion is hardly necessary or proportionate, and neither is compulsory DNA testing.”

Under the law, individuals who refuse to provide a sample could face up to 7 years in prison.

Criticism is mounting in Australia about the sale of low-evidence complementary medicines in pharmacies.

An ABC radio report last month censured the Australian Pharmacy Guild for its lax regulation of the sale of dubious complementary or alterative treatments. Reporter Ann Arnold interviewed leading pharmacist Adam Phillips, who is indignant about the widespread sale of products like ‘Liver Detox’ and Vitamin B3 tablets that claim to ‘release energy from the blood’.

In March The Medical Journal of Australia published an opinion piece by academic physician Dr. Edzard Ernst, in which Ernst criticized the rebranding of ‘complementary medicine’ as integrative medicine’:

“It has been claimed that integrative medicine is merely a rebranding exercise for alternative medicine, and a critical assessment of the treatments that integrative clinics currently offer confirms this suspicion.”

Ernst slammed the field of integrative medicine, calling it both unscientific and unethical:

“Integrative medicine is an ill-conceived concept which turns out to be largely about the promotion and use of unproven or disproven therapies. It thus is in conflict with the principles of both evidence-based medicine and medical ethics.”

The MJA went on to publish a poll of readers in which 79% of respondents called the sale of low-evidence alternative medicines “unethical”.

In a scathing article, Chris Brooker – editor of the Australian Journal of Pharmacy Daily – suggested that the complementary and alternative medicines industry violated basic principles of commercial pharmaceutical ethics.

Earlier this year, the American Information Technology and Innovation Foundation (ITIF) awarded their facetious ‘annual Luddite award’ to a lose coalition of AI sceptics, including Tesla CEO Elon Musk and renown physicist Stephen Hawking. The ITIF labelled the likes of Musk and Hawking ‘alarmists’ engaged in and “feverish hand-wringing about a looming artificial intelligence apocalypse”.

Yet the sarcastic gesture did not go down well. This week Nature published a scathing critique of the ITIF’s ‘fanciful futurism’, defending the ‘legitimate concerns’ of Musk and Hawking.

“Machines and robots that outperform humans across the board could self-improve beyond our control — and their interests might not align with ours. This extreme scenario, which cannot be discounted, is what captures most popular attention. But it is misleading to dismiss all concerns as worried about this.”

“Few foresaw that the Internet and other technologies would open the way for mass, and often indiscriminate, surveillance by intelligence and law-enforcement agencies, threatening principles of privacy and the right to dissent. AI could make such surveillance more widespread and more powerful.”

“Many experts worry that AI and robots are now set to replace repetitive but skilled jobs…The spectre of permanent mass unemployment, and increased inequality that hits hardest along lines of class, race and gender, is perhaps all too real.”

Ironically, the risks of AI are already being felt indirectly as universities lose young talent to the corporate sector. 

A powerful debate over conscientious objection is brewing in Canada. The Canadian parliament is drafting a law to implement a Supreme Court order to allow assisted suicide and euthanasia. Some doctors fear that they will be forced to perform the procedures or refer patients to more compliant doctors.

Writing in the Canadian Family Physician, Dr Nancy Naylor, a general practitioner, declared that she had decided to retire:

"I refuse to let anyone or any organization dictate my moral code. For this reason I am not renewing my licence to practice medicine . I have practiced full scope family medicine , including palliative care for the past 37 years and solely palliative care for the past 3 years. I have no wish to stop. But I will not be told that I must go against my moral conscience to provide standard of care."

Appeals to conscience are emotionally powerful. But do doctors have a right to appeal to their “moral conscience” to refuse to carry out legal procedures?

Today one of Canada’s most influential bioethicists and a colleague present the case for ignoring conscience claims in the Journal of Medical Ethics. Professor Udo Schuklenk, who is also co-editor of the journal Bioethics, and Ricardo Smalling, both of Queen’s University in Ontario, contend that “Forcing patients to live by the conscientious objectors' values constitutes an unacceptable infringement on the rights of patients.”

In a nutshell their argument is that medical professionals have made a contract with society. In return for a lucrative monopoly on the provision of an essential service, patients have a right to demand that they provide socially acceptable and legal services. By withholding their services, they are exploiting the power differential between them and patients. They cite American bioethicist R. Alta Charo, who says:

“claiming an unfettered right to personal autonomy while holding monopolistic control over a public good constitutes an abuse of the public trust—all the worse if it is not in fact a personal act of conscience but, rather, an attempt at cultural conquest”.

In Schuklenk and Smalling’s view, conscientious objection, based as it is on indemonstrable premises, is arbitrary and fickle. “Today it might be abortion and assisted dying, tomorrow it might be the use of the tools of personalised medicine or something else altogether.”

There might be a psychological cost to doctors whose conscientious beliefs are not accommodated by the state, but denying services to patients in need of services like abortion or euthanasia is more costly still. If a doctor feels (like Dr Naylor) uncomfortable, he or she should leave the profession. Ultimately, what matters is what society has declared to be legal, not the inscrutabale dictates of an individual conscience. Quoting the great British 17th century philosopher Thomas Hobbes, Schuklenk and Smalling argue: “the law is the public conscience by which [a citizen] hath already undertaken to be guided”. If the law changes, consciences must change as well. Otherwise there would be anarchy.

This is a stimulating essay which is sure to be influential for the future of conscientious objection in Canada.