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.  

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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.