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  12:23:00 PM

Last act in stem cell research tragedy

The sorry saga of yet another flawed stem cell paper riddled with fraudulent data has come to an end. Nature has retracted a paper and a letter, both published in January, which claimed that physical perturbation of cells could create genetic effects. At the time the results were trumpeted on the front pages of newspapers around the world.

However, scepticism soon set in after other scientists failed to replicate the results. Japan’s RIKEN Institute, where the principal author, Haruko Obokata, worked, launched an investigation. One after another the authors retracted the paper. It appears that several careers have been destroyed by the incident and that RIKEN itself may be radically reformed.

In a contrite editorial Nature insists that fundamentally it was not to blame for the debacle, which has placed the whole field of stem cell research under a cloud. “We have concluded that we and the referees could not have detected the problems that fatally undermined the papers. The referees’ rigorous reports quite rightly took on trust what was presented in the papers.”

As for the future: Nature is drafting new protocols for assessing submissions:

“… although editors and referees could not have detected the fatal faults in this work, the episode has further highlighted flaws in Nature’s procedures and in the procedures of institutions that publish with us. We — research funders, research practitioners, institutions and journals — need to put quality assurance and laboratory professionalism ever higher on our agendas, to ensure that the money entrusted by governments is not squandered, and that citizens’ trust in science is not betrayed.”
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  11:07:00 AM

Is a day of doom looming for bioethics?

Ragnarök is the day in Norse mythology when gods and men meet their doom. After three years of continuous winter, bloody battles and many natural disasters, the world will be flooded, and all but a few will die.

Predictions of a Ragnarök for bioethics surface regularly in academic journals. The latest comes from a sociologist at the University of California, San Diego, John H. Evans, the author of The History and Future of Bioethics: A Sociological View. Writing in the Journal of Clinical Ethics, he forecasts a bleak future for practicioners of bioethics when they seek to offer advice for large organisations.

Before bioethicists start claiming that "ethics" demands an action that is contrary to the interests of people with actual power, they should become clearer on the basis of their authority … Note that there are very few possible claims to authority for the bioethics profession.
Many professional jurisdictions are made through claims to truth, justified by science. Engineers have jurisdiction over designing hospital buildings that will not fall over in an earthquake, because they use methods that have been almost universally accepted as producing truth (for example, physics]. Doctors claim jurisdiction over heart surgery because it is "true" that cutting this way instead of that leads to higher survival. Lawyers claim jurisdiction over certain tasks in the hospital because the government has essentially granted them jurisdiction through public law.
But, by whose authority does the bioethicist assert their truth? The problem, in the U.S. in particular, is that “ethics” are not thought to be “true,” but rather relative to its citizens. No one is entitled to his or her own view of scientific facts, but everyone is entitled to their own view of ethics. Bioethics has thus always had a very weak claim of authority.
To recap: it has never been clear how the bioethics profession justifies using “accepted ethical principles” in [healthcare ethics consultation] when it is supposed to be clarifying the ethics of others. This is a weakness and may lead to challenge. More critically, before bioethicists move too strongly into organizational ethics, where they will encounter people with true power, they should derive an answer to the questions: “Whose ethics do you represent?" and “How do you know what their ethics are?” Two answers that will not work in a pluralistic liberal representative democracy are: “I represent my own ethics," and “I represent the ethics of the collective wisdom of a particular academic tradition."

Dr Evans recommends that whatever the public thinks should become the constitutional dogma of bioethics, as determined by sociologists. This obviously has its own problems. The distinguished bioethicist Daniel Callahan, in a response to the Evans paper, points out that “if surveys had been relied upon to fashion policy, there would be few rights for women and minorities”.

The good news is that the world is born anew in Norse mythology. Perhaps bioethics will spring alive after the apocalypse.

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  9:50:00 AM

BMJ backs assisted suicide

One of the world’s leading medical journals has endorsed the legalisation of assisted suicide. An editorial of the BMJ (formerly the British Medical Journal), says, “Lord Falconer’s Assisted Dying Bill is expected to receive its second reading in the House of Lords this month. The BMJ hopes that this bill will eventually become law… Let us hope that our timid lawmakers will rise to the challenge.”

The authors, Fiona Godlee, the editor-in-chief, Tony Delamothe, the UK editor; and Rosamund Snow, the patient editor, have given fresh comfort to the supporters of an assisted suicide bill which has failed several times before in the British Parliament.

Apart from reassuring readers that there are few dangers in legalisation, they base their argument four-square on the widely-accepted principle of autonomy.

“People should be able to exercise choice over their lives, which should include how and when they die, when death is imminent. In recent decades, respect for autonomy has emerged as the cardinal principle in medical ethics and underpins developments in informed consent, patient confidentiality, and advance directives. Recognition of an individual’s right to determine his or her best interests lies at the heart of efforts to advance patient partnership. It would be perverse to suspend our advocacy at the moment a person’s days were numbered.”

A strong influence in framing their argument is the experience of Oregon, where assisted suicide is legal – and unproblematic, in their view. Extrapolating Oregon’s figures to England and Wales, the BMJ editors contend that legalisation would hardly affect the working lives of British doctors:

“… each year about one patient per general practice of 9300 patients would discuss the issue of assisted dying; each general practice would issue one prescription for life ending medication every five or six years, and every eight to nine years one patient per general practice would take life ending medication.”

The editorial was immediately disavowed by the publisher of the BMJ, the British Medical Association. Dr Mark Porter, chairman of the BMA council, said: “There are strongly held views within the medical profession on both sides of this complex and emotive issue. ‘The BMA remains firmly opposed to legalising assisted dying. This issue has been regularly debated at the BMA’s policy forming annual conference and recent calls for a change in the law have persistently been rejected.”

As one would expect, there were a number of responses to the editorial. A palliative care physician questioned whether it would be right to frustrate the autonomy of patients who were not terminally ill who wanted to commit suicide. A psychiatrist wrote that legalisation would corrupt the profession and hurt public trust. “Instead of killing patients, why not try talking to them?”

Kevin Yuill, a history professor and the author of Assisted Suicide: The Liberal, Humanist Case Against Legalization, argued that assisted suicide is a moral issue which does not depend on opinion polls. “The UK abolished the death penalty in 1998 (rightly, in my mind) because we recognised that it is wrong, even for the best possible reasons, for the state to take a life. Make no mistake: the Falconer Bill will reinstate the death penalty for those who do not think their lives are worth living.”

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  5:02:00 PM

We need to redefine parenthood, say bioethicists

“And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.” This conversation from the Book of Genesis about infertility took place about 4,000 years ago, but the pain has not lessened with the centuries. Two recent articles in the Journal of Medical Ethics tackle this issue from different angles. But they concur on an important principle: “it is important not to reinforce the dogma that genetic parenthood is ‘the best kind of parenthood’”. People should be told that traditional concepts of motherhood and fatherhood are obsolete.

Heidi Mertes, of Ghent University, examines whether artificial gametes will be an adequate tool for infertile couples to create a child. Research on these is proceeding apace and it may be possible for a man to create egg cells and for a woman to create sperm. But Mertes is sceptical; they are unlikely to be safe or cost-effective for many years. Worse, it reinforces the traditional genetic view of “real” parenthood:

“Some people who are currently happy with the (safe and relatively cheap) solution of using donor sperm (eg, lesbian couples) will get the message that this is inferior to having their ‘own’ lab-created gametes. This is not only a wrong message to send but also creates a situation in which this new innovation not only meets demand but creates demand.”

In another article Anna Smajdor and Daniela Cutas discuss the possibility of creating artificial gametes from stolen genetic material. At the moment this is the stuff of science fiction, but a few cases of babies conceived with stolen sperm have come before the courts. Although conception took place without the man’s knowledge or consent, the courts still have concluded that he is still the child’s father and must therefore pay child support. They comment on this absurd situation:

“our existing legislative frameworks privilege genetic relationships over other considerations, in ways that can have long-term consequences for those who are found ‘guilty’ of genetic parenthood. It is this that makes the prospect of AGs and unwitting genetic parenthood a problem.”

In this sense, discussions of artificial gametes “could thus be a welcome catalyst for a reanalysis of genes, parenthood and legal obligations, leading ultimately to a long-overdue divorce between genetic and legal parenthood”. 

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  4:05:00 PM

Do prisoners have a right to participate in clinical trials?

Prisoners are being unfairly excluded from taking part in potentially beneficial clinical research, on the grounds that it would be too difficult and expensive to do so, according to research in the Journal of Medical Ethics

The pendulum of clinical research on prisoners seems to be swinging back towards participation. In a sense the origins of bioethics are to be found in research on prisoners – in Nazi concentration camps in the 1940s. Revulsion at those atrocities led to the Nuremberg code stressing the importance of informed consent. Nonetheless, prisoners were still used for trials. During the 1970s, about 85% of all US phase-1 clinical trial were conducted on prisoners. The substances to which they were subjected ranged from perfume, soap and cosmetics to dioxin, psychological warfare agents and radioactive isotopes.

In the wake of a number of scandalous abuses, attitudes have changed – so dramatically, say the authors, that current guidance governing research in prisons nowadays in the UK is too 'protectionist' and restrictive. The strongest argument for prisoner participation in research, they say, is equity: prisoners should have access to the same healthcare and research opportunities as other citizens.

They also cite a moral argument:

“participants may benefit through the moral satisfaction of contributing to society. Research contribution can be regarded as a public good. As such, excluding prisoners denies them the opportunity to make the same moral contribution as free members of society, disengaging them from the wider moral community. Moreover, prisoners may particularly value this as a way ‘to redeem, atone and reconcile’.”

(It no accident that the words “to redeem, atone and reconcile” strike a religious note in an otherwise utilitarian essay. They ultimately came from a 1996 article in a journal called “Catholic Lawyer” in which they were used ironically.)  

Prisoners are a highly vulnerable group and in the past they were sometimes horribly exploited by researchers. Will this happen again? The authors are optimists. Times have changed: “Research is now subject to strict regulations, research governance and review, all of which act as safeguards against unethical research.” Surveys have shown that although prison life does influence a decision to participate, “it is questionable whether such influences constitute coercion”.

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  10:42:00 PM

Can patients enjoy a life of disability?

Severe head injuries sometimes require a life-saving procedure called “decompressive craniectomy” in which a piece of the skull is removed to allow swelling in the brain to subside. The problem with this is that patients often survive with severe disabilities. Many of them are young people who had been in good health and the operation leaves them in a condition that they and their families might regard as unacceptable.

This create a problem for informed consent. It is a fundamental principle of bioethics that patients must consent to their treatment. However, patients with traumatic brain injury are in no position to give consent to a decompressive craniectomy. Would they give retrospective consent? In other words, are they happy that doctors save their life, even if it unfolds as a life of disability? What a fit and healthy person regards as “acceptable” might not match what a disabled person feels about life.

To examine this issue, a team of researchers in Perth, Australia, interviewed 20 patients who had survived for at least 3 years with an unfavourable outcome and published their results in the Journal of Medical Ethics. There were difficulties in getting responses from some of the patients. However, surprisingly, a majority of them were happy that the operation had been performed and saved their lives. The researchers concluded that:

“Many patients appeared to have adapted to a level of disability that competent individuals might deem unacceptable. This does not necessarily mean that such outcomes should be regarded as ‘favourable’, nor that decompressive craniectomy must be performed for patients with predicted poor outcome. Nevertheless, those burdened with the initial clinical decisions and thereafter the long-term care of these patients may draw some support from the knowledge that unfavourable may not necessarily be unacceptable.”
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  9:54:00 PM

Euthanasia back on the boil in France

Vincent Lambert   

Euthanasia is once more on the front page of French newspapers with two high-profile case in the courts.

The case of Vincent Lambert echoes the protracted legal wrangle over Florida woman Terri Schiavo before she died in 2005. Lambert, a 39-year-old fireman in Rheims, has been living in a “minimally conscious state” for five years after motorcycle accident. He is also a quadriplegic.

His wife, six siblings and his doctors want normal hydration and nutrition to be withdrawn so that he will die. Although Lambert had left no advance directives, family members testified that he had said that he would not want to be kept alive in such a state.

His parents, two siblings and the French state want to give him normal hydration and nutrition, thereby extending his life indefinitely. “He is not sick, he is not at the end of his life, he is not suffering,” Jean Paillot, a lawyer for the parents, told the media. “From our perspective, there is no reason to stop feeding or hydrating him.”

This week the Conseil d’Etat, or council of state, backed his wife and ordered Lambert’s nutrition and hydration to be withdrawn. However, the parents immediately appealed to the European Court of Human Rights, which has issued an injunction to keep the man alive until it can study the matter.

According to the French edition of Slate, about 1,500 to 1,700 people in Lambert’s condition are being kept alive in French institutions.

Coincidentally, this week years in a criminal court came to an end for Dr Nicolas Bonnemaison. He had been accused of euthanasing seven patients who were at the end of their lives. A jury found him not guilty and declared that he had  taken medically justified decisions to end the agony of his patients, even though one of the drugs was a banned poison.

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  4:44:00 PM

Fish belong in our moral circle, says Australian researcher

Do you still believe that fish are dumb and cannot feel pain? That we do not have to worry much about how they are cared for or caught? Think again, says Culum Brown of Macquarie University in Australia, in a review article in the journal Animal Cognition. He claims that fish cognition and their sensory perception are generally on par with that of other animals. More consideration should be given to fish welfare and anti-cruelty issues.

The Australian researcher says that most people rarely think about fish other than as food, or as pets. However, they are second only to mice in terms of the numbers used in scientific research, and the more than 32,000 known species of fish far outweigh the diversity of all other vertebrates combined. Unlike whales, the public is indifferent to fish welfare issues. Brown believes this relates to incorrect perceptions about the intelligence of fish, and ultimately of whether they are conscious.

Fish, says Dr Brown are far more intelligent than many previously believed. They have good memories, live in complex social communities, and develop stable cultural traditions. Fish even recognize themselves and others. They also cooperate with one another and show signs of Machiavellian intelligence, such as cooperation and reconciliation. They build complex structures, are capable of using tools, and use the same methods for keeping track of quantities as humans do.

For the most part the primary senses of fish are just as good, and in many cases, better, than that of humans. Their behavior is very much the same as that of primates, except that fish do not have the ability to imitate.

The level of mental complexity fish display is on a par with most other vertebrates, while there is mounting evidence that they can feel pain in a manner similar to humans. While the brains of fish differ from other vertebrates, fish have many analogous structures that perform similar functions. Brown concludes that if any animals are sentient, fish must be considered to be so too.

"[The] best practice would be to lend fish the same level of protection as any other vertebrate," concludes Brown, who acknowledges that such a move has implications for the fishing industry, among others. "We should therefore include fish in our 'moral circle' and afford them the protection they deserve."

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  9:48:00 AM

Supreme Court withholds judgement on assisted suicide as human right

Britain’s Supreme Court has dismissed an appeal by campaigners to have assisted suicide pronounced a human right. The appeal was made by the family of Tony Nicklinson, an assisted suicide advocate who died in 2013. Nicklinson’s family asked the court to rule that the current state of assisted suicide law was incompatible with article 8 of the European Convention on Human Rights (which stipulates that all human beings have a right to “a private life”).

The court ruled that it had jurisdiction to make the desired declaration, but that nevertheless it was more appropriate for the UK parliament to make such a statement. Lord Neuberger, president of the court, stated in his judgement, “On the basis of the arguments and evidence which have been put before the Court, there would have been too many uncertainties to justify our making a declaration of incompatibility.”

Nevertheless, Neuberger warned that if parliament failed to consider the matter in the near future, there was “real prospect” of a successful future legal challenge. “It is a very positive step”, said Jane Nicklinson. “Parliament will have to discuss this”.

Dr Andrew Fergusson, of Care Not Killing, welcomed the decision. “The law in England and Wales remains unchanged, with the Court recognizing that it exists to protect vulnerable, elderly and disabled people. This is why Parliament has debated and repeatedly voted against changing the law in recent years.”

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  9:38:00 AM

No organised organ trafficking during Kosovo War - EU investigation

The infamous 'yellow house' in Albania

An EU investigation into organ trafficking in Albania is said to have found no evidence linking the Kosovo Liberation Army to forced organ harvesting.

A Kosovar television station reported this week that the EU team found no indication of an organised organ-harvesting racket. Cases of organ theft were isolated incidents carried out by individuals and not criminal groups, the station reported.

Serbian politicians and lobby groups have long alleged that the Prime Minister of Albania, Hashim Thaci, and other senior officials were involved in the forced harvesting of organs from captured Serbian soldiers in the 1998-1999 Kosovo War.

The findings of the new investigation – if the early reports are true - run contrary to a 2011 Council of Europe report linking Albanian guerrillas to forced organ-harvesting operations. 

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