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  3:05:00 PM

‘Informed consent has become a fetish’ – American bioethicist

In a recent Hastings Centre Report article, bioethicist Barbara A. Koenig argues stridently against traditional informed consent models for genetic testing:

"My view is that the focus on consent in contemporary biomedical research has become the modern equivalent of a fetish".

Koenig believes that the ‘full disclosure’ model of informed consent is impracticable. She recounts her experience developing genetic testing protocol after the mapping of the human genome in the 1990s:

“Even then, we recognized that the ideal of full disclosure of all risks and benefits of a particular genetic test, ideally by a trained genetic counselor,would collapse once the volume of genomic data increased. If it took an hour to counsel a patient about one condition, what would happen if panels of test could simultaneously offer multiple findings?”

Koenig proposes a model of consent whereby decision-making is outsourced to a ‘representative citizens group’ educated in basics of genetic testing. This group would be able to make informed decisions on behalf of patients, saving time, money and significant patient distress:

“The focus turns away from a ceremony of individual control and choice. Instead, consent is about giving up control, agreeing to accept a set of procedures and practices created and interpreted by a group of fellow citizens; it is ‘consent to be governed.’”

Koenig argues that this model preserves rather than undermines individual freedom:

“Personal sovereignty is not violated when research participants who will share in the benefits of genomics knowledge are given the opportunity to consent to be governed.”

The article is an interesting complement to the other recent, more extreme challenges to informed consent regulations

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  2:55:00 PM

Nasal growth found on woman’s back after stem-cell treatment

An experimental Portuguese stem cell trial has resulted in a woman developing a nasal growth on her back.

In 2006 the anonymous woman attended a Portuguese hospital where tissue containing olfactory stem cells were taken from her nose and implanted in her spine. The hope was that these cells would develop into neural cells and help repair nerve damage in the woman's spine.

Eight years later she had a spinal growth removed in a US hospital. Doctors investigated the growth and discovered it to be composed of “mostly of cysts lined by respiratory epithelium, submucosal glands with goblet cells, and intervening nerve twigs”.

The cells had continued to grow as olfactory cells rather than morph into neural tissue. The growth was secreting a “thick, copious mucous-like material” which seems to have been pressing against the patient’s spine, causing considerable discomfort.

“It is sobering,” says George Daley, a stem cell researcher at Harvard Medical School who has helped write guidelines for people considering stem cell treatments. “It speaks directly to how primitive our state of knowledge is about how cells integrate and divide and expand.”

The case shows that experimental stem-cell treatment remains risky even when carried out in respectable hospitals.

The findings of the investigation were published online the month in the Journal of Neurosurgery. 

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  2:45:00 PM

Top scientists call for restrictions on pathogen creation

Anthrax growing in a petri dish

A prestigious international group of scientists has called for a limit on the creation of potential pandemic pathogens (PPPs). The scientists, calling themselves the Cambridge Working Group (CWG), drafted a statement earlier this month warning of “fallibility” of even the safest virology laboratories:

“Recent incidents involving smallpox, anthrax and bird flu in some of the top US laboratories remind us of the fallibility of even the most secure laboratories, reinforcing the urgent need for a thorough reassessment of biosafety.”

In the past two months three separate incidents have occurred in the US alone, involving smallpox, anthrax and avian influenza.

The CWG suggested PPP researchers convene and establish stricter guidelines, just as in the Asilomar process:

“A modern version of the Asilomar process, which engaged scientists in proposing rules to manage research on recombinant DNA, could be a starting point to identify the best approaches to achieve the global public health goals of defeating pandemic disease and assuring the highest level of safety.”

Many more academics, including three Nobel laureates, have signed the CWG statement since its publication on the 14th

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  2:29:00 PM

Couples flock to Thailand for sex selective IVF

Thailand has become a top tourist destination for women seeking gender-selective IVF. The country is one of just three that permit gender selection – the other two are the US and South Africa – and it offers the most affordable procedures.

Hundreds of women from China and Hong Kong travel to Thailand each year, and that number is set to increase. Alfred Siu Wing-fung - just one of a number of Hong Kong health tourism agents - sells ‘gender selection IVF packages’ to about 200 Chinese couples a year.

Siu estimates about 10,000 gender selection cycles were carried out in Bangkok last year, at an average cost of $15,000 per treatment.

While medical equipment and drugs are imported, clinics are staffed mostly by Thai doctors and nurses trained overseas.

Around a dozen clinics in Bangkok offer the procedure.

The Medical Council of Thailand is campaigning to have the practice banned. However, in light of recent political instability, the legislative change remains low on the government’s list of priorities.  

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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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