Sunday, February 14, 2016

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

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

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

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

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Michael Cook
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This week in BioEdge

2016-02-08 12:40 AM
Dutch psychiatric patients may get euthanasia too easily, says US study
by Xavier Symons | Feb 14, 2016
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tags: euthanasia, existential suffering, Netherlands, PAS

A new study in the journal JAMA Psychiatry has presented an alarming picture of physician evaluation of euthanasia requests in the Netherlands. The article, lead authored by National Institutes of Health (NIH) psychiatrist Dr. Scott Y. H. Kim, examined 66 psychiatric euthansia and assisted suicide (EAS) case summaries made available online by the Dutch regional euthanasia review committees.

The authors found that 56% of patients reported having refused at least one kind of treatment, and of those, almost half refused because of ‘lack of motivation’.

The study also confirmed the findings of previous surveys that loneliness is a key driver behind requests by those suffering from mental illness. Of the 66 patients surveyed, 37 identified  loneliness or social isolation as a motivation behind their request. One elderly patient – both mentally and physically healthy –gave no other reason for euthanasia other than loneliness after her husband had passed away. Many of the patients used what the study called a “mobile-end-of life clinic” – a doctor and nurse funded by a local euthanasia advocacy group. 

Dutch women with a psychiatric illness were more than twice as likely to be euthanased than men. Of the 66, 70% were women; 32% were 70 or older; 44% were between 50 and 70; and 24% were between 30 and 50. However, information about the patients in the reports was scanty. They contained little social history, not even their family structures. Marital status, occupation, education level, race/ethnicity, and nationality were rarely mentioned.

There was a total of 110 psychiatric EAS cases between 2011 and 2014, but the regional review committees uncovered only one patient for whom due care criteria were not met. This was a woman  in her 80s with chronic depression who sought help from a mobile end-of-life clinic which sends a doctor to patients whose own doctor has refused to euthanase them.

“The clinic physician met with her 2 times (the first time was 3 weeks before her death), and the patient was not alone on both occasions, with family members present. The physician was not a psychiatrist, did not consult psychiatrists, was unaware of the Dutch Psychiatric Association Guidelines, and yet ‘had not a single doubt’ about the patient’s prognosis.”

In another case, the regional review committee was merely critical. “The patient had attempted suicide, which led to a broken thigh. The patient refused all treatments and requested EAS. The RTE was ‘puzzled’ by the fact that this physician ‘complied with the patient’s [EAS] wish almost at once”.

The statistics suggest that patients “shop” for compliant doctors. Among them, 32% had been refused EAS at some point but physicians later changed their mind about three of them and performed EAS, while 27% had physicians who were new to them perform the EAS. In 14 of the 66 cases studied, the new physician was affiliated with the mobile euthanasia practice.

The authors hint that regulation may be lax. "The retrospective oversight system in the Netherlands generally defers to the judgments of the physicians who perform and report EAS. Whether the system provides sufficient regulatory oversight remains an open question that will require further study," they conclude.

American specialists expressed strong reservations about the way that the Dutch handle psychiatric patients who want to die.

“The criteria in the Netherlands essentially require that the person’s disorder be intractable and untreatable, and this study shows that evaluating each of those elements turns out to be problematic,” said Dr. Paul S. Appelbaum, a professor of psychiatry, medicine and law at Columbia University, told the New York Times.

Dr. Appelbaum continued, “the idea that people are leaving their treating physician and going to a clinic that exists solely for this purpose, and being evaluated not by a psychiatrist but by someone else who has to make these very difficult decisions about levels of suffering and disease — it seems to me like the worst possible way of implementing this process.”

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A Dutch report applies the brakes on ‘completed life’ euthanasia
by | Feb 13, 2016
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tags: completed life, euthanasia, Netherlands

Although euthanasia in the Netherlands is often regarded as an unstoppable juggernaut, a government commission has suggested that the brakes be applied.

Activists have been pressing for euthanasia on the basis of “completed life”, that is, for people who have simply lost interest in living, regardless of age or state of health. They also wanted the government to approve a “peaceful pill” which would allow people to kill themselves without the help of a doctor.

However, after a lengthy study, the Schnabel Commission has declared that expanding the boundary of euthanasia is not advisable. It believes that current legislation already provides for cases of “completed life”, which are equivalent to the symptoms of old age, in any case. It is also important for doctors to be involved in the euthanasia process. It is not a job for people without medical qualifications. “In the light of the seriousness and the irrevocability of the decision to end a life, take extreme care is necessary,” says the report.

The Dutch right-to-die association (NVVE) was surprised by the conservatism of the government’s response.

A recent survey of the NVVE among 20 members who have a complete life, showed that they just deliberately have chosen solitude. It is a sign of letting go of life associated with the aging process and the longing for death. It is hard to imagine and accept that there comes a time when life is over. But by not recognizing the demand for care of these people, they are not being taken seriously.

The youth wings of several political parties also protested, with the support of the NVVE. “This opinion is a setback in the struggle for self-determination," they said.

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Celebrating 15 years of Dutch euthanasia
by | Feb 13, 2016
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tags: euthanasia, Netherlands, NVVE

Beginning today, the Dutch right-to-die association NVVE is celebrating Euthanasia Week with a  selection of documentary films and youth outreach. The festivities mark the 15th year of legal euthanasia in the Netherlands -- although the NVVE seems to be jumping the gun, as the law came into effect on April 1, 2002. 

Currently, more than 5,300 people die annually in the Netherlands after euthanasia.

Activities for young people organised by NVVE Jongeren, the youth wing of NVVE,  are a significant part of the program. There is a film about a 27-year-old woman who chooses to die. Another feature is Café Doodnormaal  (Dead Normal Café), a monthly discussion group about end-of-life issues and autonomy for young people.

NVVE provides information, consultation and education about euthanasia and assisted suicide in the Netherlands. Its motto is: “A dignified life deserves a dignified death”. It claims to have 161,000 members and has a reputation for innovation in end-of-life options. In 2012, for instance, it launched a mobile van service so that people whose own doctors had refused to euthanase them could get a more compliant doctor. 

Another event organised by the NVVE is a three-day international conference in May -- Euthanasia 2016: professional challenges. On the program are discussions on euthanasing couples, self-euthanasia, euthanasia for people suffering from dementia, and scrutiny and accountability. 

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Canada’s ‘euthanasia courts’
by Xavier Symons | Feb 13, 2016
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tags: Canada, euthanasia, law

Because Canada’s federal government still has not passed euthanasia legislation, the Supreme Court has authorised provincial courts to arbitrate on requests for euthanasia.

In a ruling which also ratified Quebec’s new euthanasia laws, the court said that people outside Quebec “who wish to exercise their rights" to doctor-assisted death may apply to their provincial superior court for judicial authorization.

 “Those who wish to seek assistance from a physician in accordance with the criteria set out in … our reasons in Carter may apply to the superior court of their jurisdiction for relief during the extended period of suspension,” the court said Friday. “Requiring judicial authorization during that interim period ensures compliance with the rule of law and provides an effective safeguard against potential risks to vulnerable people.”

It is unclear how exactly the courts will judge the applications.

Some were pleased with the decision, saying it was time that certain people under particular circumstances were given a say in when and how their lives should end.

Conservative bioethicist Wesley Smith saw the decision as an adieu to the Canada of yesteryear:

“This is just stunning. A judge is going to dispassionately review an application to be killed, and then, rule thumbs up or down…Poor Canada. We hardly knew ye.” 
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IVF audit in Australia
by Xavier Symons | Feb 13, 2016
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tags: Australia, commercialization, IVF

An Australian consumer watchdog is conducting a wide-ranging investigation into the country’s 34 IVF clinics. Several complaints have been made to the Australian Competition and Consumer Commission (ACCC) about the lack of transparency of IVF success rates, and the practice of making vague statements about a clinic’s own success rates.

The ACCC has started a major compliance exercise looking at how Australia's 34 IVF clinics present their success rates.

"We certainly have found instances of information being put on the websites and being given to consumers that we think is misleading," ACCC chairman Rod Sims told the ABC’s  7.30 Report.

One clinic– ‘Genea’ – has flouted the Fertility Society of Australia guidelines not to compare their success rates with the national average, advertising on its website "an almost 40 per cent greater chance of taking home a baby”. Experts argue the claim doesn’t reflect the complexity of the fertility problems treated by other clinics.

Meanwhile, a new South African egg donation agency, Known Egg Donors, has started flying women to Australia to give their eggs to Australian clinics. Australian IVF patients have paid $13,600 to the agency for fresh eggs from the donors, on top of their other IVF costs. 

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Should we get rid of race in genetics?
by Xavier Symons | Feb 13, 2016
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tags: eugenics, genetics, racism

Racial categories have long been used in genetics to aid research on health and development. Yet recently academics have been discouraging the use of such taxonomies, arguing that they are pragmatically unhelpful and, at times, morally objectionable.

One of the strongest statements yet came in an article published in Science last week, entitled ‘Taking race out of human genetics’. Michael Yudell of Drexel University and three of his colleagues sounded alarm bells about the continuing (and, on some measures, increasing) use of racial categories in genetic research: 

“We believe the use of biological concepts of race in human genetic research—so disputed and so mired in confusion—is problematic at best and harmful at worst. It is time for biologists to find a better way.”


According to the authors, “there have been no systematic attempts to address [race-related issues in research] and the situation has worsened with the rise of large-scale genetic surveys that use race as a tool to stratify these data.”

They called on the U.S. National Academies of Sciences, Engineering, and Medicine to convene a panel of experts “ to recommend ways for research into human biological diversity to move past the use of race as a tool for classification in both laboratory and clinical research”.

In an interview with NPR, Sarah Tishkoff and Dorothy Roberts – academics from the University of Pennsylvania Penn and co-authors of the article – discussed the issues posed by continuing use of racial categories.

According to Roberts, a sociologist, “[race] leads researchers down the wrong path and leads to harmful results for patients. For example, black patients who have the symptoms of cystic fibrosis aren't diagnosed because doctors see it as a white disease.”

Roberts also believes there are historical reasons for abandoning racial categories:

“There is a long history of justifying the subordination of different groups and social groupings based on myths about their biologic or genetic predispositions. It's not only that there's scientific evidence that humans aren't divided into discrete biological categories we'd call races. But there's also evidence of the harm these biological meanings of race have caused for centuries.”
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Cruelty at home and abroad
by | Feb 13, 2016
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tags: circumcision, female genital mutilation

Here’s a potato so hot that even naming it sparks controversy. For the purposes of discussion, let’s call it female genital mutilation (FGM), the name the World Health Organization favours. But it is also called female genital cutting or female circumcision. It means that a girl’s or (less commonly) a woman’s, genitals are cut in varying degrees of severity in accordance with traditional practices in Africa and the Middle East.

As Oxford bioethicist Brian Earp points out in a paper in the Kennedy Institute of Ethics Journal (in press) there may be a double standard in the discussion of this practice, which is almost universally decried in the West. Why isn’t FGM also applied to the increasingly common cosmetic surgery for young women in Western countries? And if we condemn FGM, shouldn’t male circumcision be subject to the same standard? As bioethicists continue debating the issue, there seems to be growing sympathy for permitting at least the minimally-harmful forms of FGM.

Which brings us to a very interesting perspective on the debate which appeared recently in the Journal of Medical Ethics blog. Matthew Johnson, of Lancaster University, says that most parents who subject their daughters to FGM do it because they love them.

[They] believe that they are acting in their children’s best interests when having them cut. They believe that being cut will ensure that their children are socially accepted, that their health will be improved and that they will live better lives than if they were left intact.

Criminalising their behaviour and packing them off to jail would do more harm than good. “Sending parents to prison serves, in most cases, to undermine, rather than promote, the wellbeing of children.”

In a fascinating rhetorical twist, he compares the alien practice of FGM to the familiar practice of sending very young children to boarding schools. Complaints by “survivors” of the boarding school experience are beginning to surface. Their grievance is not only sexual abuse and bullying, but the practice of “privileged abandonment” itself, which created generations of upper-crust, stiff-upper-lip, emotionally frigid adults. Brookfield Grammar School, the fictional setting for Goodbye, Mr Chips, was not representative of the schools which formed Britain's elite:

While the harms of abusive boarding schools are very different, along a number of dimensions, to FGM, they can be significant, debilitating, and caused by the adaptive preferences of parents. There are no calls for the prosecution of parents who handed their children over to public school child molesters or who ignored the suffering of their children at these institutions or who even willfully wished for their children to be transformed into stoic individuals lacking in empathy.

After all, they only wished the best for their children. Many parents felt deeply uncomfortable as they left their children at these institutions, helpless in the knowledge, perpetuated by their privileged communities, that abandonment was an integral means of shaping their offspring into respectable citizens. Despite all the evidence of harm among some former pupils, there has hardly been a wave of calls for parents to be penalized for their actions.

Johnson argues that the only way that “FGM or male circumcision will disappear is by people in practicing communities gradually rejecting it collectively themselves”. And he concludes that “It is unfortunate, then, that a government led by people from boarding schools should be committed to inflicting separation between children and their parents by sending the latter to prison – whether the former believe they have been harmed or not.”   

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Clinton fumbles on end-of-life choices
by | Feb 13, 2016
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tags: 2016 US election, assisted suicide, end of life issues, Hillary Clinton

Clinton's response is at 2.00 minutes 

After California, the biggest state in the US, legalized assisted suicide, and after a video by Brittany Maynard went viral on YouTube, you might think that candidates for the White House would have clear and crisp opinions on its ethics and feasibility.

But when Hillary Clinton was asked for her opinion in a New Hampshire town hall debate, she was stumped. “This is the first time I've been asked that question,” she told an 81-year-old man with colon cancer. Fumbling for words, she produced a few woolly platitudes. At least it is clear that she is opposed to involuntary euthanasia.

“We need to have a conversation in our country. There are states, as you know that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals.

But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective.

So here's how I think about it.

I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses.

So I don't have any easy or glib answer for you.

I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been.

Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw.

So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

To be fair to Mrs Clinton, bioethical issues do not have top billing in the 2016 campaign. It will be interesting to see what the other candidates have to say.

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Zika: still wrapped in mystery
by | Feb 13, 2016
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tags: Zika

This was a week of confusing information about the Zika virus epidemic, which the World Health Organization has described as a “Public Health Emergency of International Concern”.

In a smoking-gun case report in the New England Journal of Medicine, Slovenian clinicians said that they had found the virus in the aborted remains of a baby with microcephaly whose mother had contracted the disease in Brazil. There have been a few other cases which also point to the virus as a direct cause of serious foetal abnormalities.

The situation is serious enough to cancel the Olympics scheduled for July in Rio de Janeiro, contend bioethicist Art Caplan, of New York University Langone Medical Center, and Lee H. Igel, of New York University. Given the risk to pregnant women, hold them is “irresponsible”. They write in Forbes:

By the time the Games roll around, many fans aren’t likely to attend. The media will report on nothing but mosquitoes and birth defects, more than a few athletes and coaching staffs will balk at competing in Rio, and Brazil will be sinking further into debt trying to battle an epidemic while paying for the Games. The IOC needs to either move the Games, postpone them, or cancel them. Prevention is the best course in the face of a serious threat to humanity.

However, there is also some evidence that the correlation of microcephaly with the Zika virus is a result of heightened awareness of the birth defect.

  • A report from the Latin American Collaborative Study of Congenital Malformations suggests that the link between microcephaly and Zika may be due to “active search and over-diagnosis”.
  • A report in The Lancet declared that “Although there is evidence of an increased number of cases of microcephaly in Brazil, … the number of suspected cases relied on a screening test that had very low specificity and therefore overestimated the actual number of cases by including mostly normal children with small heads.”
  • A epidemiological report in the WHO’s Bulletin points out that a spike in microcephaly cases began in 2012, before reports of a Zika epidemic emerged in 2014. “If the ZIKV [Zika virus] were indeed introduced in Brazil at the World Cup in mid 2014, the outbreak of microcephaly would have preceded it. ZIKV has been identified in Africa over 50 years ago, and neither there nor in the outbreaks outside Africa, such an association with microcephaly has been reported.”

So there are still quite a few mysteries surrounding the virus. It is too early to panic or to resort to extreme measures like advising infected women to have abortions. 

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Edinburgh to host world bioethics conference
by | Feb 12, 2016
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tags: bioethics, conferences

Edinburgh is the venue for 2016 world congress of the International Association of Bioethics, whose theme is “Individuals, Public Interests and Public Goods: What is the Contribution of Bioethics?”

It will take place from June 14 to 17. The organisers say that the birthplace of the Scottish Enlightenment is a very appropriate place for an interdisciplinary conference.

According to the conference’s website, the event will be “… less of a traditional academic conference and more of a festival of knowledge that seeks to build a bridge between the questions and answers of how bioethics can contribute to some of the most pressing issues of our time – from genetic research to global pandemics, and from scarce resources to climate changes that affect us all.”

The Feminist Approaches to Bioethics world congress, will immediately precede the IAB conference at the same venue. 

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Michael Cook
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