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  2:22:00 PM

Are bioethicists tools of policy technocrats?

Although bioethicists are believed to provide fearless independent advice, challenging policy-makers to make the “right” decisions, a Swiss expert in bureaucracies contends that  this is often not the case. Writing in the journal Governance, Annabelle Littoz-Monnet, of the Graduate Institute of International and Development Studies, in Geneva, contends that bureaucrats use ethical experts to get their own way when they have to deal with controversies like GM foods or embryonic stem cell research.

“… establishing ethical experts as a new category of expertise alongside scientific experts actually bolsters the technocratic domain in areas where it is contested, thus reinforcing the authority of experts and bureaucrats in the policy process, rather than democratic control.”

After studying the decision-making process in various issues in the European Union, Littoz-Monnet concluded that “ethical experts have become a crucial tool of governance in the hands of policymakers who might wish to protect technocratic decision making in contested, value-based policy issues related to specific scientific or technological developments”.

One case was the controversy over embryo research around 2005. A number of  members of the European Parliament were adamantly opposed, as well as several member states, like Germany and Austria. But “By shifting the debate away from irreconcilable ethical positions back toward the technicalities of the issue, the opinion of the [European Group on Ethics in Science and New Technologies] designed a workable policy scenario… By putting the ‘ethics’ experts at the core of the policy process, the European Commission succeeded in retechnocratizing the mode of conflict settlement (outcome controlled by experts and technocrats) despite the blatant politicization of the policy debate.” 

Of course the European Union is the last circle of Paradise for bureaucrats. Still, ethics committees in other countries might be subject to the same pressures. Remember the classic line in Yes, Minister: "The three articles of Civil Service faith [are]: it takes longer to do things quickly, it's more expensive to do them cheaply and it's more democratic to do them in secret."

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  1:14:00 PM

A novel idea for decreasing euthanasia rates

As the debate on assisted suicide in the British House of Lords approaches, a group of five academics from Switzerland and the UK  have come up with a novel idea to keep the incidence of euthanasia from rising rapidly: legalise assisted suicide.

In a July 12 letter to  The Lancet they observe that the incidence of “hastened deaths” in countries with carefully regulated assisted suicide is much lower than in Belgium or the Netherlands where euthanasia is legal.

The exception to this is Switzerland, where assisted suicide has been legal since 1918. But the authors point out that Swiss suicide is not tightly regulated. In the Netherlands and Belgium, where both assisted suicide and euthanasia are on the books, patients overwhelmingly choose euthanasia. Why? The authors believe that it is easier to ask someone else to kill you rather than to do it yourself.

“ … if patients are given the choice, they prefer to have their doctors do the procedure. Since overall incidence rates of hastened death are much higher in these two countries than in regions where only assisted suicide is allowed, the availability of euthanasia done by a physician could lower the psychological threshold for requesting hastened death.”

They say that more research is needed.

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  10:20:00 AM

Corrupting the peer review process

Peer review is supposed to protect us against junk science. But what happens if the peer review is junk science? The Journal of Vibration and Control, a member of the SAGE publishing group, has revealed what happens and it’s not pretty. SAGE has announced that the JVC is retracting 60 papers by a Taiwanese researcher, Peter Chen, formerly of National Pingtung University of Education, Taiwan.

According to a press release from SAGE:

“[Peter Chen] created various aliases on SAGE Track, providing different email addresses to set up more than one account. Consequently, SAGE scrutinised further the co-authors of and reviewers selected for Peter Chen’s papers, these names appeared to form part of a peer review ring. The investigation also revealed that on at least one occasion, the author Peter Chen reviewed his own paper under one of the aliases he had created.”

In the fallout from the scandal, Taiwan’s education minister, Chiang Wei-ling, who was listed as a co-author on several of the paper, has resigned. It appears that he had no direct involvement, but he was a thesis supervisor of, Peter Chen’s twin brother, CW Chen, who used his name as a co-author.

The Taiwanese government has said that if Chen (who has disappeared) is found guilty of academic misconduct, he would have to return government research grants and he would be banned for life from applying for further funding. It is also possible that other academics were involved in the fraud. 

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  8:17:00 AM

Distelmans under fire over Auschwitz trip

Belgium’s foremost practitioner of euthanasia who is also the head of the government euthanasia regulator has become collateral damage in the debate across the Channel. As the war of words intensified in England ahead of a debate today in the House of Lords over Lord Falconer’s assisted suicide bill, the Daily Mail ran a feature about Dr Wim Distelman’s controversial plans to tour Auschwitz in September.

Although Dr Distelmans insists that the purpose of the “study tour” is a deeper understanding of human rights, suffering and palliative care, the people who responded to the Daily Mail were aghast.

A Jewish Labor member of Parliament Labour MP, Sir Gerald Kaufman, commented: “To make the notorious Nazi concentration camp of Auschwitz the centre for a congenial study-trip is preposterous, if not obscene. Whatever one’s views on euthanasia – and I am against – it is abominable to describe Auschwitz as an ‘inspiring venue’. What went on at Auschwitz and the other death-camps was mass murder of innocents – children, women and men.”

The news flew back across the Channel to Belgium where Dr Distelmans was subjected to surprisingly sceptical questioning from a normally supportive press. The headline in Het Nieuwsblad was “Britten noemen Distelmans ‘Dokter Dood’”—“the British call Distelmans Doctor Death”. "That headline [in the Daily Mail] is obscene,” protested Dr Distelmans. “I think this is terrible. It suggests that we are going there to find a better way to euthanize people. You must have a morbid mind to think that." He described the attacks on him and his study tour "gutter journalism". 

Even less sympathetic was the Belgian newspaper Joods Actueel (Jewish News). Its editor, Michael Freilich, said, “Any use of the Holocaust to defend one’s own interests is wrong, but to plan such a seminar in Auschwitz is degrading.” 

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  4:13:00 PM

Transforming ethics this summer

Yes, in our on-going quest for cultural relevance, we have uncovered bioethics even in the summer blockbuster Transformers: Age of Extinction (Rotten Tomatoes rating of 17%). Writing in Slate, Jonathan Moreno, of the University of Pennsylvania, and a past president of the American Society for Bioethics and Humanities, reports that the Stanley Tucci character shout at one of the autobots, "I know you take the bioethical issues very seriously!"

“In the film, Tucci plays an arrogant CEO who wants to transfer the brains of deceased Transformers into his man-made Transformers. Is that ethical? And does he think that those Transformer brains are the equivalent of their minds? Is that even metaphysically possible? The warm and fuzzy autobots are understandably offended. Unlike this captain of industry, they seem to have a moral compass in their glove compartments.
“Whatever else one says about this insanely discontinuous CGI slugfest, the Tucci character’s line is a minor pop-culture breakthrough that’s worth notice: Considering the ubiquity of bioethics themes in modern sci-fi movies, it’s high time somebody used the ‘b’ word.”

And what does the fourth Transformers film teach us? Moreno writes:

"Transformers raises questions about mutability, personhood, the upshot of technology, and the fact that in the end, we are entirely dependent on the universe, which might at any moment deliver creatures that can be vengeful or compassionate."
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  6:10:00 PM

Lord Falconer’s assisted suicide bill under attack

Criticism of Lord Falconer’s assisted suicide bill is mounting as the proposed legislation returns to the House of Lords. Various public figures have spoken out against the bill, arguing that it would put elderly citizens at risk and may escalate to a Netherlands-style euthanasia epidemic.

Professor Theo Boer, University of Utrecht bioethicist and member of a review committee monitoring euthanasia deaths in the Netherlands, warned the UK parliament on Wednesday about legalising the procedure.

Professor Boer recounted how euthanasia deaths in the Netherlands have doubled in the past six years, and may reach a record 6000 in the year 2014.

Boer is concerned that, as in the Netherlands, the law will be manipulated and existential suffering will become a common reason for AS:

‘Cases have been reported in which a large part of the suffering of those given euthanasia or assisted suicide consisted in being aged, lonely or bereaved. 

“Some of these patients could have lived for years or decades. Pressure on doctors to conform to patients’ – or in some cases relatives’ – wishes can be intense.” “Don’t do it”, professor Boer tersely stated.

Archbishop of Canterbury Justin Welby published an article in the Times on Saturday expressing his opposition to the bill. He warned that the legislation could be abused and elderly pressured into taking their own lives.

“Abuse, coercion and intimidation can be slow instruments in the hands of the unscrupulous, creating pressure on vulnerable people who are encouraged to “do the decent thing”.

He continued,

“Even where such pressure is not overt, the very presence of a law that permits assisted suicide on the terms proposed by Lord Falconer of Thoroton is bound to lead to sensitive individuals feeling that they ought to stop 'being a burden to others'”. 

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  6:00:00 PM

Dutch doctor challenges informed consent regulations

A new article in the Journal of Medical Ethics suggests that medical authorities lessen informed consent requirements for perinatal sterilization. Dr. Douwe Verkuyl of Refaja Hospital, the Netherlands, argues that tubal occlusion (TO) should be offered to women after a traumatic birth, even if they haven’t previously been consulted during pregnancy.

Under current International Federation of Gynaecology and Obstetrics (FIGO) regulations doctors can provide a TO at the time of birth provided the patient has been consulted during pregnancy. If there has been no early consultation doctors are prohibited from performing the procedure.

FIGO is concerned that vulnerable women will rashly chose sterilization at the time of birth and later regret it.

Dr. Verkuyl questions the ‘vulnerability’ of women at the time of birth. He claims that there is no empirical evidence to support the belief that regret is higher in cases of ‘belated consultation’ perinatal TO. The risk, he asserts, is “possible but unproven”.

Verkuyl argues that, in developing countries, the benefits of perinatal TO for a women’s health outweigh the possible drawbacks:

“Doctors should always consider whether the costs of not offering the TO option are likely to outweigh the possible but unproven additional risk of TO regret after belated, as compared with early, TO counselling.”

Verkuyl asserts that in developing countries alternative contraceptive methods are often hard to come by and perinatal TO might be the only contraceptive option. It may be the only means of preventing “unsettling” and “dangerous” future pregnancies.

Many see Verkuyl’s new article as a worrying challenge to informed consent regulations. It flies in the face of prudent advice found in FIGO guidelines: “Even if a future pregnancy may endanger a womans life or health, she will not become pregnant immediately, and therefore must be given the time and support she needs to consider her choice.” 

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  5:43:00 PM

Nitschke under investigation yet again

Pro-euthanasia campaigner Phillip Nitschke is being investigated for his involvement in the death of 45 year old West Australian man. The Medical Board of Australia is concerned that Nitschke advised Mr. Nigel Brayley to commit suicide without first suggesting formal psychiatric assessment. It appears Brayley was suffering from depression after the death of his wife and loss of his job in the mining industry.

In an interview with the ABC, Nitschke said Brayley was “not at the level” of severe depression.

Others are doubtful. “[Nitschke] gravely misinterprets how life events figure in depressive decision making”, said Monash bioethicist Paul Biegler. “Stresses such as job loss, money trouble, relationship breakdown and indeed criminal investigation figure in two-thirds of depressive episodes”.

At the time of Brayley’s suicide police were investigating his wife’s death as a possible murder.

Beyond Blue chairman Jeff Kennett was furious at Nitschke. “I was appalled…

what I can't understand is a medical professional actually supporting them to go out ... to leave us”, Kennett said.

The Australian Medical Board refused to comment on the matter. 

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  4:42:00 PM

Questions over wireless-controlled contraceptives

New ethical dilemmas may be coming if a Massachusetts company succeeds in developing a contraceptive chip which could be activated and deactivated with wireless technology.

MicroCHIPS will begin preclinical testing of its device next year. If it passes safety and efficacy tests, it could be on the market by 2018. According to Technology Review, “the device would be more convenient for many women because, unlike existing contraceptive implants, it can be deactivated without a trip to the clinic and an outpatient procedure, and it would last nearly half their reproductive life.”

The chip measures 20 x 20 x 7 millimetres and would be implanted under the skin of the buttocks, upper arm, or abdomen where it would dispense daily doses of the hormone levonorgestrel. To conceive, women would turn the dosage off with a remote control. To resume contraception, they would log in to the system and turn it back on. It is designed to dispense contraception for 16 years. The device could dispense other drugs, but the company is initially using contraceptives.

The idea originated with philanthropist and billionaire Bill Gates, who is keen to develop new methods of birth control as part of his foundation’s programs for the developing world.

Even if the chip is safe and effective, wireless control raises a host of issues which need to be addressed. Any device which is controlled wirelessly can be hacked. Absolutely watertight solutions would be needed to prevent angry ex-boyfriends, the NSA, snooping journalists or controlling governments from manipulating women’s fertility.

Dr Robert Farra, of MIT, believes that these scenarios are unrealistic. He told the BBC: "Communication with the implant has to occur at skin contact level distance. Someone across the room cannot re-programme your implant. Then we have secure encryption. That prevents someone from trying to interpret or intervene between the communications." 

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  3:38:00 PM

Oldest Down syndrome skeleton found in France

Earlier cultures may not have stigmatized people with Down syndrome as much as we do, archaeologists have suggested after examining a site in France. In an article in the International Journal of Paleopathology, says Maïté Rivollat at the University of Bordeaux in France and colleagues comment on a skeleton of a 5–7 year old child from Saint-Jean-des-Vignes in north-eastern France from the 5th or 6th century. It appears to be the earliest and youngest skeleton of its type ever discovered.

The child almost certainly suffered from Down syndrome, but he or she was not treated any differently from other members of her community when buried. He was placed on her back and oriented east-west with the head at the western end, just like most of the others found in the necropolis.

"[we] infer that this Down syndrome child was not treated differently at death than others in the community. We interpret this as meaning that the child was maybe not stigmatized during life, the first time a Down syndrome individual has been so viewed in the context of the ancient community."

Although some archaeologists believe that there are depictions of Down syndrome in painting and sculpture as old as 1500BC, only two “sub-adult” skeletons have been discovered.  

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