‘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… click here to read whole article and make comments


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… click here to read whole article and make comments


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… click here to read whole article and make comments


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… click here to read whole article and make comments


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,… click here to read whole article and make comments


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.

“ …… click here to read whole article and make comments


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… click here to read whole article and make comments


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… click here to read whole article and make comments


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… click here to read whole article and make comments


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… click here to read whole article and make comments


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