September
04
 

US bioethics group calls for cloning ban

Nowadays, according to Google News, media interest in cloning is focused on cloning credit cards. There are some articles about cloning mammoths and the Tasmanian Tiger, but almost none about cloning human beings. What a contrast to the supercharged decade following the cloning of Dolly the sheep in 1997!

But while cloning may have tiptoed out of news rooms, it lingers in laboratories, says a bioethics group called the Witherspoon Council on Ethics and the Integrity of Science, which includes several former members and staffers from the President George W. Bush’s Council on Bioethics. With the lull in the debate, now is the time for legislative reform, the Council argues. It wants to ban all forms of human cloning as well as the creation of embryos for research.

The Council, whose co-chair is Robert P. George, of Princeton University, has just published its extended moral and medical arguments against human cloning in the journal The New Atlantis. It argues that “If research cloning is not stopped now, we face the prospect of the mass farming of human embryos and fetuses, and the transformation of the noble enterprise of biomedical research into a grotesque system of exploitation and death.”

Cloning continues. In May 2013 Shoukhrat Mitalipov, of Oregon Health & Science University, successfully cloned human embryos and then destroyed them to create embryonic stem cells. This was precisely what had sparked the furore ten years earlier. After the discovery of induced pluripotent stem cells, however, which allowed researchers to develop therapies without creating or destroying embryos, most researchers pushed cloning onto the back burner.

At the moment, the Council says, cloning is still morally repugnant for most of the American public. Only “an extreme commitment to reproductive autonomy for its own sake” could justify it. However, as the Council perceptively points out,

“But autonomy is a powerful force in our culture, so we should not imagine that cloning-to-produce-children will forever remain anathema to the American public. Other foundations of family life that have been held as common sense since time immemorial have been increasingly eroded by advocates of unfettered autonomy in a remarkably short time. Taking a stand against cloning while there is still a consensus among Americans that cloning is profoundly wrong will be an essential part of a defense of the family in coming years.”

The report also predicts future developments which combine cloning with genetic engineering: genetically engineered children; embryonic and fetal farming; growing prenatal human beings outside of the womb (ectogenesis); creating headless babies for growing organs; interspecies cloning; and artificial eggs and sperm.

One bioethicist who has not forgotten about cloning is Julian Savulescu, a professor at Oxford University and editor of the Journal of Medical Ethics. He recently ridiculed opponents of cloning and the yuck factor in a blog post. But “the wisdom of repugnance” is one issue that the Witherspoon Council develops in its report. It acknowledges that “the fact that most people find the idea of human cloning morally troubling and repugnant is not proof that cloning is wrong” but insists that the repugnance is provoked by deeper moral considerations, which it discusses at some length.

The report concludes with suggestions for amending state and Federal laws dealing with human embryos:

“The justification for engaging in cloning-for-biomedical-research is weaker than ever before, thanks to the availability of viable alternative sources of pluripotent stem cells. And yet experiments have continued, bringing us closer to the day when a pregnancy can be initiated with an embryo created through cloning. The practice of science in a free society is not exempt from democratic oversight, and in the case of cloning, such oversight is urgently needed. The time to act is now.”



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September
05
 

No anonymity means less sperm in UK

The UK’s new national sperm bank – established after the country changed its laws on donor anonymity – has been struggling to find volunteers, with just 9 men registered as donors after one year.

The sperm bank, based in Birmingham and funded by a one off £77,000 award from the Department of Health, was set up in 2014 by the National Gamete Donation Trust and Birmingham Women’s hospital to help counter a serious shortage of sperm donors in the UK. 

The chief executive of the sperm bank, Laura Witjens, says the shortage is the result of two factors: the difficulty of finding suitable donors, and the need for a nationwide advertising campaign.

“If 100 guys enquire, 10 will come through for screenings and maybe one becomes a donor. It takes hundreds of guys,” Witjens said.

Other sperm bank executives see the removal of anonymity from the legislation as the chief cause of the decrease in donation. “[the changes] have decimated our sperm donation programme…It had a devastating impact”, said Prof Charles Kingsland, founder of the Hewitt Fertility Centre in Liverpool Women's Hospital. Kingsland’s sperm bank needs another 200 donors to keep up with demand.

Witjens says she is planning a massive ‘recruitment’ campaign, drawing upon the successful sperm donor advertising campaigns in Demark.

“If I advertised saying ‘Men, prove your worth, show me how good you are’, then I would get hundreds of donors,” she told The Guaridan. “That’s the way the Danish do it. They proudly say, this is the Viking invasion, exports from Denmark are beer, lego and sperm. It’s a source of pride.”

She is reluctant, however, to overemphasise male vanity, as this may upset future donor conceived children: “Does that make it more complicated? Hell yes.”

A November advertisement for the sperm bank is planned, which asks men to consider giving an “alternative Christmas gift”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
05
 

European court strikes down challenge to embryo law

The European Court of Human Rights has rejected a case that would have overruled existing Italian law on the use of frozen embryos in research.

The court ruled that Adelina Parillo – who with her partner Stefano Rolla, a film director, created five embryos in 2002 – did not have a right to donate her embryos to scientists for research.

Parillo was claiming that existing Italian law regulating embryo research violated the right to privacy and private property. After the sudden death of her partner in 2003 Parillo tried to donate the embryos for research into disease.

In a 16-1 the Human Rights Court found that Italy had not contravened Article 8 of the European Convention on Human Rights, on the right to respect for private and family life.

Much of Italy’s 2004 legislation regulating artificial reproduction has been struck down by the country’s judiciary.

The Human Rights Court said that Italy was to be given considerable room for manoeuvre on the sensitive question, due to the lack of a European consensus and international texts on the issue.

The court also said there was no evidence the woman’s deceased partner would have wished to donate the embryos for medical research.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
05
 

Antipsychotic drugs given to children with disabilities

Research in the British Medical Journal has revealed that people with intellectual disabilities are routinely being given antipsychotic drugs to treat disruptive behaviour. This is particularly concerning as the drugs can have serious side-effects, and have not been clinically proven to regulate behaviour in people with intellectual disabilities. 

The study, produced by researchers at Imperial College London,  analysed data from more than 33,000 people with a learning disability between 1999 and 2013. The patients they studied included people suffering from Down syndrome, dementia, autism and epilepsy. Many had difficulties with learning, communication, daily living and information and social skills.

The researchers found that 9,135 had been prescribed anti-psychotic drugs, of whom 71% had no record of severe mental illness. The authors concluded that people with a record of challenging behaviour were more than twice as likely to receive anti-psychotics as those without such a history.

Lead author Rory Sheehan, an academic clinical fellow in the UCL division of psychiatry, said the findings were very worrying: “these drugs may cause adverse side-effects, and they should not be routinely used outside situations in which they have proven benefit.”

Commenting on the study, Dan Scorer of the disability charity Mencap told the Daily Mail: “Sadly the report findings are not a surprise as they confirm what we have heard from families time and time again about loved ones being given high levels of anti-psychotic or anti-depressant medication, often for years… In many cases families report serious side effects and no evidence that the medication is helping the individual.”

Evidence suggests that the drugs are not effective at treating aggressive and disruptive behaviour, says psychiatrist Peter Tyrer of Imperial College London. A 2008 study of the two most commonly used psychotropic drugs found that these interventions were no better at reducing behavioural problems than a placebo



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September
05
 

The eternal return of the embryo debate

Leading UK gene-editing research funders have issued a position statement tacitly supporting research using human embryos. The statement – published this Wednesday by the Wellcome Trust, the Medical Research Council and three other leading funding bodies – urges "gobal stakeholders" to actively review existing restrictions on embryo experimentation, in light of the possibilities arising from new biotechnological developments:

"We also recognise…that there may be future potential to apply genome editing in a clinical context using human germ cells or embryos, though this is prohibited by law in the UK and unlikely to be permissible in other European jurisdictions at present. This raises important ethical and regulatory questions, which need to be anticipated and explored in a timely and inclusive manner as the basic research proceeds and prior to any decisions about clinical application."

The funders encourage "biomedical and social scientists, ethicists, healthcare professionals… and the wider public" all to engage in the debate.

New gene editing technologies, namely the CRISPR Cas9 system, have meant that targeted, highly efficient editing of a genome sequence may become relatively simple. Based on early research into the CRISPR system, it appears that scientists now have the ability to cut human genomic DNA at any desired location.

But while British funding bodies are keen to reconsider embryo experimentation, the US National Institutes of Health (NIH) are very apprehensive. In a statement published in Nature, NIH director Francis Collins says that the question of editing embryos is not a new one, and is “viewed nearly universally as a line that should not be crossed”.

"NIH will not fund any use of gene-editing technologies in human embryos. The concept of altering the human germline in embryos for clinical purposes has been debated over many years…Advances in technology have given us an elegant new way of carrying out genome editing, but the strong arguments against engaging in this activity remain." 


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
04
 

Nearly 2/3 of psychology papers cannot be trusted

Nearly two-thirds of all psychology research should be distrusted because it cannot be replicated, according to a troubling paper in Science.

This study reports work by the Reproducibility Project, an initiative at the University of Virginia in Charlottesville which was launched in 2011 after a succession of scandals in psychology research. Brian Nosek and a huge team of co-authors tried to reproduce the results of 100 articles in three leading journals. They found that only 39 could be replicated.

Although it is impossible to say whether the conclusions of a paper are true or false only because its results cannot be reproduced, it does suggest that it might not stand up to scrutiny. An expert in medical statistics, John Ioannidis, of Stanford University, told Nature that he fears that the true level of non-reproducible research may be as high as 80%.

Reproducibility is at the  heart of the scientific method. As Nosek writes in Science, “Scientific claims should not gain credence because of the status or authority of their originator but by the replicability of their supporting evidence. Even research of exemplary quality may have irreproducible empirical findings because of random or systematic error.”

Part of the problem is that promotion and prestige depend mainly on innovation and new research; there are few kudos for confirming another scientist’s results. Nonetheless reproducibility is vital: “Innovation points out paths that are possible; replication points out paths that are likely; progress relies on both. Replication can increase certainty when findings are reproduced and promote innovation when they are not.”

“We see this is a call to action, both to the research community to do more replication, and to funders and journals to address the dysfunctional incentives,” Nosek told the New York Times. He says that research in other disciplines needs to be evaluated as well. 



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September
04
 

Should sex offenders be chemically castrated?

The legislature of the American Pacific territory of Guam has just passed a bill authorising compulsory chemical castration for convicted sex offenders before they are released.

According to FBI statistics Guam has the second highest rate of rape in the United States. "The numbers are staggering," said the proponent of the bill during a debate. "It's frustrating, ... it makes you shake your head." But another senator responded, "Is there going to be a piece of legislation to cut out tongues, cut out hands?"

This opposition between protecting the public and the human rights of the offender is characteristic of debates over chemical castration all over the world. In the Australian state of New South Wales, a government taskforce is currently studying whether judges should compel offenders to undergo it.

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) is opposed to mandatory or compulsory biological treatments for child sex offenders. “(Our) Code of Ethics states that psychiatrists shall seek valid consent from their patients before undertaking any procedure or treatment,” said a spokesman.

An Australian expert on sex offenders raised concerns about the treatment last year. Dr Maggie Hall said:

“Primum non locere or “first, do no harm” is a fundamental tenet of medical ethics. Administering a substance that has substantial side effects (such as osteoporosis) and many unknown outcomes, in an environment that restricts the individual’s autonomy, raises substantial human rights concerns.”

Very few jurisdictions around the world have compulsory castration for sex offenders. However, the Wellcome Trust in the UK is funding a study of the bioethical issues involved, called “Neurointerventions in Crime Prevention”.

“On the one hand, there seems to be at least some reason to support the use of neurointerventions in this way, since there is a clear need for new means of preventing crime. Traditional means of crime prevention, such as incarceration, are frequently ineffective and can have serious negative side-effects; neurointervention may increasingly seem, and sometimes be, a more effective and humane alternative.

“On the other hand, neurointerventions can be highly intrusive and may threaten fundamental human values, such as bodily integrity and freedom of thought. In addition, humanity has a track record of misguided and unwarrantedly coercive use of psychosurgery and other neurotechnological 'solutions' to criminality. “



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September
04
 

Wanted: responsible bioethics journalism

The raucous debate over a 2012 article in the Journal of Medical Ethics “After birth abortion, why should the baby live?” is still echoing in the corridors of academe. Together with Neil Levy, editor of the journal Neuroethics, Francesca Minerva, a post-doctoral fellow in bioethics at University of Melbourne and a co-author of the controversial article, has written a passionate plea for better science journalism in The Conversation.

“Bad research and bad communication of research can cause harms to the broader public and to particular groups … [and] can cause harm to academics, too.”

Some responses to the “after-birth abortion” article were hair-raising. One obscure American blogger wrote: “The ethical imperative to kill these would-be baby-killers is so obvious that it almost goes without saying” -- and published the work address, phone number and photo of Minerva and co-author on his blog.

Another not-so-obscure blog published an article titled, “Should Alberto Giubilini, Francesca Minerva, Julian Savulescu, and Kenneth M. Boyd Be Summarily Executed By The State or By Individual Actors?” Apparently the author was attempting to emulate Jonathan Swift’s A Modest Proposal, but, lacking Swift’s genius, he appeared to be inciting his readers to kill the authors.

Fear silences, Minerva says. “The more academics fear being involved in media storms, the less they feel free to explore topics they consider important. Academics and the public both stand to lose from a kind of preventive censorship that may arise.”

It’s not clear what reforms the two ethicists have in mind. But no one could disagree with their conclusion: “The more people read us, understand us and interact with us and evaluate our work, the better our work will be. But we need to ensure the public reads and understands what we actually said and meant.”



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August
29
 

Australia to ponder sex selection

Sex selection is on the agenda in Australia. The National Health and Medical Research Council (NHMRC) has called for public comment on new guidelines for IVF clinics. The most contentious change involves removing a ban on destroying embryos because they are not of the desired gender.

In an article in The Conversation the chair of the Australian Health Ethics Committee, Ian Olver, gives a number of reasons why this could be an appropriate change. He dismisses the notion of a slippery slope towards selcting for genes and creating designer babies:

“Aside from such choices not yet being medically possible, the slippery slope argument may falter because there’s no natural progression between approving non-medical sex selection and approving being able to select other characteristics. Sex selection is a discrete choice around which a definite boundary can be drawn.”

Australians are already selecting the sex of their children, but they are forced to go to overseas clinics, in places like the US or Thailand. Professor Olver says that this could be risky, because “not all international clinics have the same standard of care that exists in Australia”. 



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August
29
 

Children contest will of Nitschke follower

The late William Kent (Bill) O’Brien  

A healthy 89-year-old Australian man has committed suicide under the inspiration of Philip Nitschke and has left nearly his entire estate to Exit International, Nitschke’s assisted suicide group.

Bill O’Brien, who lived in Perth, went to a hotel room and took a lethal dose of Nembutal in July last year. He left his A$1.8 million estate to Exit International to be spent on hiring a full-time political lobbyist, but only $5,000 each to his son and daughter. He was a personal friend of Dr Nitschke and one of three directors of Exit.

Dr Nitschke said that Mr O’Brien was not close to his children and that in any case they are “wealthy adults”.

His son claims that Mr O’Brien owed him $300,000 at the time of his death. His daughter says that the death was very hurtful. “When he died, he did not have an illness and was in good health for his age,” she told The West Australian. “It was a great shock that he took his life, especially without saying goodbye. He went to a hotel and followed the Exit protocol. He left letters on his bed.

The children are contesting the will. 



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August
29
 

Scepticism greets new stem-cell regulations in China

China has issued new laws to regulate stem cell research, hoping to crack down on rogue clinic offering bogus cures.

China’s National Health and Family Planning Commission says that all stem cell treatments are deemed to be experimental, except for bone marrow transplants. There must be informed consent by the patient,  clinical-grade stem cells must be used, treatment may take place only at authorised hospitals which are not allowed to advertise or charge for the procedures. The treament must be tested first on animals.

The Commission also warned overseas patients about the dangers of stem-cell tourism.

"Anyone caught breaking the rules will be punished according to the new regulation," said Zhang Linming, a  commission official. The only problem is that no punishments have been specified.  

Douglas Sipp, a stem-cell policy expert at  stem-cell policy at the RIKEN Center for Developmental Biology in Japan, told Nature News: “In principle, I applaud any efforts to rein in practice of predatory clinics that take advantage of patients. But the fact that these new rules do not appear to have penalties leaves open the question of how effective they will be. I have seen China crack down on stem-cell clinics at least twice in the past, and the results were inconclusive.”



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August
29
 

Bioethics on US campaign trail

More bioethics in the US presidential campaign. Democratic front-runner Hillary Clinton has compared Republican candidates to terrorists for promising to ban all abortions with no exceptions for rape, incest or the life of the mother.

“Now extreme views on women, we expect that from some of the terrorist groups, we expect that from people who don’t want to live in the modern world, but it’s a little hard to take coming from Republicans who want to be the president of the United States.”

She also gave strong support to beleaguered Planned Parenthood, which is fighting allegations that it is profiting from the sale of foetal tissue.

But the most interesting controversy is simmering in Ohio, where one of Ms Clinton’s would-be rivals, Republican Governor John Kasich, is mulling over whether or not to sign a bill banning the abortion of Down syndrome children.

Critics say that the bill is confused. It could mean that many more Down syndrome children will be born. At the moment, 60 to 90% of women abort them after a prenatal diagnosis. But the bill makes no provision for extra funding to care for the disabled children. As The Economist noted: “If the law goes through, as seems likely, women will be required by the state to give birth to their disabled child, but will not be able to count on much help from the state to raise it.”

Champions of Down syndrom children focus on human rights, not the financial burden. “We all want to be born perfect, but none of us are, and everyone has a right to live, perfect or not,” Mike Gonidakis, the president of Ohio Right to Life told the New York Times. “You go to any supermarket or mall and see these families who just happen to have a child with Down syndrome, and they will tell you how fortunate they are to have those children. Pretty soon, we’re going to find the gene for autism. Are we going to abort for that, too?”



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August
29
 

The risks of freezing

The treasurer of a peak international fertility body has warned women not to rely on egg freezing to have children. Dr Edgar Mocanu of the International Federation of Fertility Societies stated that current science does not support the supposition that egg freezing will allow women to circumvent infertility:

“As regards social freezing, the scientific community believes there are not yet sufficient data to recommend oocyte cryopreservation for the sole purpose of circumventing reproductive aging in healthy women”, he wrote in BioNews.

He urged women not to overestimate the utility of the novel procedure:

“There is no denial that egg freezing offers the hope of a pregnancy irrespective of the reason for the initial freeze. Yet, delaying conception while betting on the availability of self-preserved or donor frozen eggs is foolish. What every woman should understand is that while career or personal goals.”

Oocyte cryopreservation involves the harvesting of eggs from a woman’s ovaries and the freezing of those eggs so they can be used at a later date.

The relatively new procedure is highly controversial. Some seeing it as liberating women while others believe it is a risky quick fix for deeper social issues



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
29
 

Scores of depressed patients euthanised in Belgium

A new study claims that vague terminology in Belgium’s assisted dying guidelines is allowing scores of psychiatric patients to be euthanized.

The worrying findings, published recently in the British Medical Journal Open, are based on a sample of 100 psychiatric patients in Belgium who requested euthanasia in the period 2007-2011.

Researchers found that most of the patients participating in the study had more than one diagnosed mental illness, with depression being the most common (59 patients) followed by split-personality disorder (50 patients).

Out of the 100 patients involved in the review, 48 had their euthanasia requests granted, and 35 carried it out. Among those remaining, 6 committed suicide, one died by palliative sedation, and one by anorexia.

The researchers are not disturbed by the thought of depressed patients being euthanized, but rather say the most pressing concern is to ensure individuals are compos mentis (of a sound mind):

“we wish to underline that each euthanasia request must be scrutinised as a request for effective and far-reaching treatment, and that any such request demands exploration of all implications and clarification of alternatives.”

“…A literature review made clear that the concept of ‘unbearable suffering’ has not yet been defined adequately, and that views on this concept are in a state of flux,” ...

“It is generally accepted that this concept is considered to be subjective, dependent on personal values, and that it must be determined in the first place by the patient.”

Fifty-nine of the patients involved in the study were living alone. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
29
 

He’s got the brains, but…

Scientists from the Ohio State University claim they have managed to produce an embryonic human brain in their labs. Presenting at Florida’s recent Military Health Research System Symposium, lead researcher Rene Anand, a professor of pharmacology, said that his lab team had managed to grow what is the most complete human brain model ever engineered.

He even had photos, to boot. Above is the picture of a white cloudy mass of nerve cells, with a discernable cerebral hemisphere and optic stalk.

Full details of the brain-growing process are currently being kept under wraps by Anand, who has a pending patent on the technique. However, it's believed adult skin cells were converted into pluripotent stem cells through a process of gene alteration. The cells were then grown in a lab where they were engineered to develop into the full range of brain tissues. 

The lab-grown grey matter has around 99% of the foetal brain's cell types and genes, the team says, and even includes a fledgling spinal cord.

Anand and his team are claiming to already have plans for using the brain model for military research, such as understanding the effects of post-traumatic stress disorder in soldiers.

The research has not yet been peer reviewed and published, and other scientists were hesitant to draw conclusions from what has been announced so far.

Professor Zameel Cader, consultant neurologist at John Radcliffe Hospital in Oxford, UK, told The Guardian, “When someone makes such an extraordinary claim as this, you have to be cautious until they are willing to reveal their data”.

In a recent blog post, Oxford bioethicist Julian Savulescu discussed the relevance of this research to debates over embryonic stem cell research and cloning:

“Strangely, there has been comparative silence to the cloning of a human brain compared to the cloning of a sheep back in 1997. Maybe our scientific literacy has fallen.”

Anand and his team see no attendant ethical concerns in their work. “We don’t have any sensory stimuli entering the brain. This brain is not thinking in any way.”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
29
 

Trust in the system

The latest edition of the American Journal of Bioethics features a fascinating serious of articles on doctor-patient trust and Shared Decision Making (SDM). The target article of the edition – written by Drs Maureen Kelly (Oxford) and Sandra Soo-Jin Lee (Stanford) et al – considers how patients perceive consent to Research on Medical Practices (ROMP).

As the authors observe, “research on medical practices (ROMP)—including medical record reviews, comparative effectiveness research, quality improvement interventions, and point-of-care randomization—is critically important to improving medical care, reducing risks to patients, and decreasing costs.”

They argue against more general informed consent procedures and in favour of a personalised, collaborative approach:  “We propose an approach that promotes engagement grounded in the principle of respect for persons, either as patients or as research participants.”

From a study of focus groups in different hospitals, the authors found that developing relationships of trust was crucial to ensure patient confidence: “The simple act of 'being asked' bolstered a sense of trust … Given our findings, taking this time will be essential for ensuring support for research in medical practice by addressing what is most important for many patients—conversations with their physicians.”

 They recommend shared decision as a prudent way to approach ROMP:

“…we suggest that shared decision making (SDM) can serve as a valuable model for managing disclosure, consent, randomization, and data sharing…SDM can support collaborative physician–patient decision making that addresses uncertainty and bridges the power gap between patient and physician knowledge while promoting transparency and trust…”.

Commenting on the article, Harvard health policy lecturer Emily A. Largent said that doctors need to be transparent with patients about the distinction between care and research (what is directed at helping the patient vs. what is being done for the good of society and future generations):

“…The ultimate success of learning health care systems rests on fostering the appropriate kinds of trust in physicians, investigators, and institutions. The importance of patient trust in learning health care systems underscores the importance of maintaining the research–care distinction…”

Drs Sabine Salloch and Jan Schildmann et al commented on the relevance of this new research to Cambridge academic Onora O’Neill’s account of trust in bioethics. O’Neill’s account might help us to clarify what kind of trust we are looking to foster:

“O’Neill’s account of principled autonomy might be seen as a 'third way' that mediates between the danger of misplaced trust and an inadequate interference with the wishes of patients for a trustful relationship with their physicians.” 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
29
 

New book chronicles history of British bioethics

While contemporary bioethics took shape in the United States, parallel developments in Britain have been extremely important in shaping debate on issues like embryo research and assisted suicide. Dame Mary Warnock, for instance, the Oxford philosopher, produced a report on embryo research in 1984 which framed future discussion.

A new book, The making of British bioethics, by Duncan Wilson, a Research Associate at the University of Manchester’s Centre for the History of Science, Technology and Medicine, provides the first in-depth study of how philosophers, lawyers and other experts came to play a major role in discussing and helping to regulate issues that used to be left to doctors and scientists.

In Britain, perhaps more than in the US, the moral authority of individual bioethicists plays a prominent role.

“bioethicists now play an equal and sometimes greater role than doctors and scientists in publicly discussing the ethics of issues such as assisted dying, embryo research and genetic engineering. Although the notion of moral expertise remains contested and many bioethicists refuse to acknowledge it, they are often portrayed as what the Guardian called ‘ethics experts’ Thanks to escalating mistrust of club regulation, both in public and, crucially, in government, they derive their authority from being ‘expert outsiders’ who are independent from the profession or procedure under scrutiny.”

(For some reason, a PDF of the book can be found here.)



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August
26
 

Interview: Julian Savulescu, editor of JME

Julian Savulescu / photo copyright John Robertson 

Julian Savulescu is the editor of the Journal of Medical Ethics, one of the world’s leading platforms for academic debate in bioethics. Australian-born, he is Uehiro Professor of Practical Ethics at the University of Oxford. Xavier Symons, deputy editor of BioEdge, asked him about the nuts and bolts of editing.

Xavier Symons: How did you get involved in the Journal of Medical Ethics? Editing a monthly journal must take a huge amount of time!

Julian Savulescu: I first edited the Journal of Medical Ethics in 2001. It was a fantastic career opportunity for me at that time. I began a second editorship in 2011. This time my motivation was not career -- I had more than enough to do. Rather it was because of dissatisfaction and frustration with publishing in the field of medical ethics. I also had a group of very talented young medical ethicists who were keen to work together on the project. We wanted to make a difference. We wanted to improve the philosophical quality of work in medical ethics.

XS: How do you measure the journal's success? By the h5 index? By the impact factor? By subscriptions?

My main measure of success is that when I pick up an issue, I find the articles stimulating, original and philosophically rigorous. We introduced the Feature Article section to attract more substantial philosophical contributions. Over the last four years those feature articles have included a number of high quality, rigorous and novel contributions to debate by philosophers and ethicists.

Another important marker of success is the quality and quantity of submissions you are receiving. Again, I think we are getting some very good submissions. When we took over, the acceptance rate was about 50%. We now accept only about one-quarter of the papers that are submitted, allowing us to apply a much higher standard for publication. It is also important to reach a wider public and press coverage is a marker of that.

Markers of impact are important, like Google Scholar H-index, ISI Impact Factor and Altmetrics. We have been extremely encouraged to note that the JME has been cited by Google Scholar as the top journal in bioethics for 2015. While all of these indices have shortcomings, they are important to communicate to people some objective markers of publication impact, so we use them.

XS: Back in 2012, a JME article on "after-birth abortion" created global media storm. Did that come as a surprise to you? What lessons have you taken away from the incident? Do you welcome media coverage any more?

Yes, I was surprised by the extent of the coverage -- it was a new phenomenon. The article did not introduce any radically new ideas. The arguments made had been discussed in philosophy and medical ethics by a number of different philosophers over more than 30 years. What was different was the audience.

A month before, a very good article by Frank Miller and Walter Sinnott-Armstrong, both leaders in the field, created a similar, but smaller, sentinel controversy in the US. The paper was about what makes killing wrong and challenging the dead donor rule. Again, this was not radically new but it was sufficient to get into the mainstream media with demands for sacking of at least one of the academics concerned. Blogs and social media connected these articles with Christian-right groups that then moved them around the internet.

What I have learnt is that it is not Big Brother who is watching, but everyone. In the current era, everything that is published can be instantly accessed by nearly everyone. Ethicists have to be prepared for titles and one-liners to be pumped around the internet. You have to be prepared to defend what you have written or published against the harshest criticism.

Do I welcome media coverage? I used to and it was part of my previous job to engage with the media. These days, I think it can sometimes do more harm than good. It is mostly the people who violently disagree who get involved, not those who agree or even who are open to an engaged debate. The terms of internet discourse are not pleasant -- there are few rules that people abide by and it tends to be nasty and brutish -- but not necessarily short.

XS: How should journal editors and academics "manage" the media? It must be hard to navigate between being too "boring" and being too "controversial".

You can't manage the media. It is hard to perfectly predict what will be picked up and how. But on any potentially provocative piece, you need to make sure that you can defend it, that the title is not going to be offensive or damagingly inflammatory, and that lines can't easily be pulled to misrepresent what the argument actually is.

My previous boss said to me about the media -- it doesn't matter so much what you say as what people hear. I think the goal should be to get people to hear the argument in its entirety without being sidestepped into a knee jerk response without engaging in it. They might well still disagree but then it is a debate, not a meaningless controversy for a few days.

XS: Editing a journal impartially can't be easy. What do you think it means to be “balanced”? And how do you go about achieving balance in what you publish?

On provocative pieces, we try to run commentaries that give the opposing side now. We give priority to pieces that present a different perspective than those that we have previously published on a topic. Editing a journal is a job -- you have a duty to the readers, as well as to authors.

XS: Blind peer review is one way to achieve objectivity, but it has been attacked in recent years. Are you happy with it?

Peer review is less than perfect. Blind peer review is an attempt to reduce the subjectivity but you can still send the same article to two experts in the field and receive completely divergent views. We are moving towards a system of "triple blinding" -- blinding not just to reviewers, but also to editors as to who the contributor is.

In our case the handling editor has the information but the editorial committee discussions take place blinded as to who the contributor and the reviewers are in final discussions about the piece.

I have encouraged associate editors to benchmark papers against other work we have published and rejected and all papers are discussed at weekly editorial meetings prior to rejection or acceptance. To be honest, I think it is a big issue.

XS: What is the JME’s unique slant on bioethics? Utilitarian? Transhumanist? Is there any significance in the fact that your journal is about “medical ethics” rather than “bioethics”?

The JME is a journal of the Institute of Medical Ethics and the British Medical Journal. Its focus is on medical ethics, not bioethics more broadly. Its audience includes health professionals. It does not have a philosophical slant. The Associate Editors have a range of philosophical perspectives, including virtue ethicists, practising Catholics and a theologian. Our unique slant is that we seek to make progress on philosophical medical ethics.

XS: A number of JME articles deal with futuristic technologies like human enhancement. Why is this important for you? Isn't it a bit outside the scope of standard bioethical discourse?

Medical ethics is not just about reacting to questions or issues that people are currently facing. It is critical to also anticipate future problems. That allows careful and considered analysis of the ethical issues before clinicians, politicians and the wider public are having to make decisions about them. For example, some of the discussion in medical ethics about gene therapy in the 1980s and 1990s is only now being applied as gene therapies are reaching the clinic.

One of the areas where medicine is changing is its use for enhancement purposes. And the most promising near-term bioenhancements will arise from medical research. For example, memory enhancers are most likely to come on the back of drugs developed to treat Alzheimer's Disease. Enhancement is a "sexy" topic and partly our publication in these areas reflects what people are working and submitting on. But we also make a conscious effort to cover traditional topics in medical ethics. For example, we have just produced a special issue on euthanasia.



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August
23
 

FDA approves “pink Viagra” for women

Nearly 20 years after approving Viagra, the US Food and Drug Administration has approved a drug for enhancing female libido. Approval was announced on Tuesday and on Thursday Sprout Pharmaceuticals, the small company which had ushered it through the regulatory process, was sold for US$1 billion in cash to Valeant Pharmaceuticals International, the largest public company in Canada.

The drug, Addyi, also known as flibanserin, works on the brain, somewhat like an anti-depressant. Sprout bought it from a German company which had given up after the FDA rejected an application in 2010. Its prospects for approval were not great, because it was only modestly effective in heightening libido, but at the cost of side effects like dizziness, nausea and fainting. It is not supposed to be taken on conjunction with alcohol.

The next step for the new owners is to get health insurers to pay for the drug, since most already cover Viagra. Valeant will face some resistance, as critics say that Addyi is a lifestyle drug, not a treatment for a medical condition. However, Sprout already developed a response to this. It promoted its product vigorously as a cure for “hypoactive sexual desire disorder” (HSDD).  Through a group called “Even the Score”, it argued that satisfying sex was a fundamental human right. If men had Viagra, women needed their own drug. It recruited the National Organization of Women to burnish the drug’s feminist credentials.

The pressure was too much for the FDA. Its committee approved the drug by a vote of 18 to 6, but none on the panel was willing to endorse it without caveats.

Some critics suspect that HSDD is not a real disorder, but a bubble of hype created by drug companies. The real problem may be one of relationships. As British sexologist Petra Boynton, told The Guardian: “The cultural wallpaper is telling you that to keep someone and be desirable and not left alone, which is a huge fear, you must be having and providing frequent sex.”

Addyi is the first approved drug for HSDD (which used to be called female sexual dysfunction and female sexual arousal disorder). But soon after Viagra was approved in 1998, many attempts were made to get a similar product for women approved. So many, that one critic wrote in PLoS Medicine:

The creation and promotion of “female sexual dysfunction” (FSD) is a textbook case of disease mongering by the pharmaceutical industry and by other agents of medicalization, such as health and science journalists, healthcare professionals, public relations and advertising firms, contract research organizations, and others in the “medicalization industry.”

Other critics warn that Addyi’s approval sends a dangerous message. “To approve this drug [sets] the worst kind of precedent — that companies that spend enough money can force the FDA to approve useless or dangerous drugs,” Dr Adriane Fugh-Berman, of Georgetown University, told the FDA in June. 



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August
22
 

India’s Jains outraged at ban on ritual suicide

While Western countries wrangle about rational suicide, India is debating spiritual suicide. The High Court of the state of Rajasthan has ruled that the Jain practice of Santhara (or Sallekhana) is illegal and not an authentic element of their religion.

The Jains, one of India’s ancient religions, believe in the sanctity of all life – so much so that they often wear face masks lest they kill gnats. But one of their practices is to fast unto death as a way of liberating the soul from the cycle of birth, death and rebirth. There are about 5 million Jains in India, and each year some 300 die by santhara. Most of these are elderly or suffering from illnesses.

After a critic of this practice lodged a public interest complaint, the court ruled that santhara violated India’s ban on suicide and assisting a suicide. The court asked the state to "stop and abolish" the practice. "Any complaint made in this regard shall be registered as a criminal case and investigated by the police," the judges said.

The Jain community, numbering about 4 million, is outraged at the ban on a custom which they consider sacred and deny is suicide. They believe that it is an infringement of their constitutional right to religious freedom. “Suicide is a great sin, the result of despair. But sallekhana is a triumph over death, an expression of hope... With suicide, death is full of pain and suffering. But sallekhana is a beautiful thing. There is no distress or cruelty," a Jain nun told William Dalrymple in his book Nine Lives.

Poonam Chand Bhandari, a Jain lawyer has filed a petition against the ruling, arguing that santhara’s purpose is “self-purification; purity of soul; it is for penance. Its purpose is purely spiritual, which does not come under the domain of the law."

However, Nikhil Soni, the lawyer who sued to have santhara declared illegal, says that it can be a form of elder abuse by greedy relatives. He also describes death from thirst and starvation as inhuman.

On Monday the Jain community will march in protest against the court’s decision. 



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August
22
 

Planned Parenthood in media crisis

Much to its chagrin, Planned Parenthood is still in the headlines of American newspapers over allegations that it is profiting from the sale of foetal tissue.

The Center for Medical Progress, a organisation of pro-life undercover investigative journalists, has released new videos of discussions with PP executives. In one of the latest ones, a woman who used to collect foetal tissue from PP affiliates describes her distress when her supervisor instructed her to cut through the face of the fetus in order to get the brain. ““She gave me the scissors and told me that I had to cut down the middle of the face. I can’t even describe what that feels like,” she said.

The CMP’s videos have become a political flashpoint, with potential Republican candidates, both state and Federal, declaring that they will strip PP of its US$528 million in Federal funding. “I think future generations will look back at this history of our country and call us barbarians for murdering millions of babies who we never gave them a chance to live,” said Florida Senator Marco Rubio said at the first debate for Republican presidential hopefuls.

Planned Parenthood is marshalling its formidable lobbying powers to counterstrike. PP Executive Vice President Dawn Laguens told The Hill that the videos were filmed illegally. "I absolutely do believe that they have violated laws in terms of how they secured these videos," she said. "But the fraud is also in how they have presented them and in the editing."

An editorial in the respected New England Journal of Medicine strongly defended the embattled group, saying that it follows “all applicable laws and ethical guidelines”. “We thank the women who made the choice to help improve the human condition through their tissue donation; we applaud the people who make this work possible and those who use these materials to advance human health. We are outraged by those who debase these women, this work, and Planned Parenthood by distorting the facts for political ends.”

Another article by bioethicist R. Alta Charo began defiantly with the sentence: “We have a duty to use fetal tissue for research and therapy.” She goes on to argue that: “Any discussion of the ethics of fetal tissue research must begin with its unimpeachable claim to have saved the lives and health of millions of people.” 



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August
22
 

Sperm donor children want answers, says Australian doco

A new Australian documentary has given voice to a small group of donor conceived Australians now trying to find their fathers.

Sperm Donors Anonymous is a cautionary tale about the effects of anonymous sperm donation on donor-conceived children, their families and on the donors. It is based around a number of real-life cases of both donor-conceived children and sperm donors, looking to connect with their kin.

In an op-ed in the Guardian, documentary producer Lisa Horler wrote: “In making our film…we are hoping to reach the thousands of men who donated sperm anonymously and say: please watch these stories of children conceived with anonymous sperm.” Horler encourages anonymous donors to take steps to attempt to contact their donor children.

Ross Hunter, a Melbourne man, discovered he was donor conceived at age 33. Hunter has created a new website, RUDC? (Are You Donor Conceived?), encouraging children to ask their parents this question.

New laws in Victoria mandate that donor information be available to donor conceived children, regardless of whether the donor consents. The new Victorian law stands in contrast to South Australia, where legislation does not explicitly recognize the right of donor conceived children to know the identity of their donor.  



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
22
 

Legal test for new surrogacy law in Thailand

A gay couple who commissioned a Thai surrogate mother to bear their child are fighting for the right to take their newborn out the country. Gordon Lake and his partner, Manuel Santos, are currently stranded in Bangkok with their newborn Carmen as the girl’s surrogate mother refuses to sign the relevant immigration agreement.  

The surrogate mother told National Public Radio in the US that she is refusing to allow the baby to leave Thailand because Mr Lake and Mr Santos are "not natural parents in Thai society".

"They are same-sex, not like male and female who can take care of babies," she said. She is also concerned that she will never be able to see baby Carmen if she is taken to America.

"…I was begging them to see the baby but they didn't allow me to see her … they treated me very badly and said I have no right to see the baby."

In March 2014 Lake and Santos signed an agreement with the surrogate mother, and there was no disagreement during the pregnancy.  The surrogate signed a consent form that allowed Mr Lake to take the baby from a hospital in Bangkok and to put his name on her birth certificate.

But the surrogate mother failed to show up at a subsequent meeting at the US embassy to sign papers that would have allowed the couple to take the baby through Thai immigration.

New legislation introduced in July of this year imposed major restrictions on surrogacy arrangements made in the country. The immigration waiver in question is a newly introduced regulation.  

Lake and Santos have been invited to petition for parental rights under Section 56 of the new law, which specifies that the new legislation does not apply to existing surrogacy arrangements.

A court date has been set for October, and the outcome of the case will likely serve as a precedent for other similar cases that are brought before the courts. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
22
 

Policy analysts criticise non-medical sex-selection

Leading bioethicists have criticised the practice of non-medical sex-selection in American IVF clinics.  Non-medical sex-selection via IVF involves a woman producing embryos which are genetically tested before implantation.  The process is known as “family balancing”.

Speaking to the Wall Street Journal LINK, bioethicist Arthur Caplan warned that this could easily become a smoke screen for families who want boys.  “When you are treating the fertile in order to produce something that they prefer as opposed to a disease, I do think you’re really opening the door to a potential slope toward eugenics,” he said.

The head of the American Congress of Obstetricians and Gynecologists Ethics Committee, Sigal Klipstein, said that the practice involved a dangerous transition from medical treatment to a kind of wish-fulfilment: “We don’t want people to use technology that’s really intended to help couples with medical needs for nonmedical reasons”.

Family-balancing services are advertised prominently on many IVF clinics’ websites. About half of the patients seeking the service come from overseas.

Australia is considering legalising the practice of non-medical sex-selection. The process has been banned in the country for ten years, but the Australian National Health and Medical Research Council claims that there has been a shift in public opinion on the issue.

Surreptitious sex-selection is already taking place in Australia as well according to SBS, a government broadcaster. “Australia registered 1,395 missing female births during 2003-2013 among Chinese and Indian communities in Australia,” Dr Christophe Guilmoto, who authored a UN report on gender selection in the country, told SBS Radio.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
22
 

New resource about euthanasia

As debate over end-of-life issues intensifies in the UK, the Anscombe Centre has released a comprehensive ‘evidence guide’ on the issue of euthanasia. The aim is “to help people assess – and judge for themselves whether they are reassured or whether they are alarmed by – the experience of countries where euthanasia or assisted suicide are legal.”

The guide gives direct links to official data from the Netherlands, Luxembourg, Switzerland, and the states of Oregon and Washington. It also includes links to relevant UK parliamentary reports and to empirical research published in journals. 

A 2014 Comres/CARE poll found that almost three-quarters of Britons (70%) support a change in current UK assisted-dying legislation.  Interestingly, this number dropped to 43% after certain arguments against euthanasia were heard.

David Albert Jones, director of the Anscombe Centre, says that “the evidence from all these countries [where assisted dying has been legalised] shows a steady increase in deaths by assisted suicide or euthanasia, a steady expansion to include patients with different conditions, and a steady decrease in the use of safeguards such as psychiatric assessment.”

The Centre has also produced a two-page briefing entitled ‘Eight Reasons not to legalize Physician Assisted Suicide’. Professor Jones argues that legalizing physician assisted suicide would not address the needs of the dying but would threaten people with disabilities and those who are suicidal. Permitting healthcare professionals to ‘encourage or assist’ suicide would undermine key principles of law, medical ethics and palliative care.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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August
16
 

Israeli doctors refuse to feed hunger-striker

Bioethics intersects with national security in Israel. An imprisoned Palestinian lawyer, Mohammad Allan, has been on a hunger strike since June 18.

Yesterday he was placed on  artificial respirator and given intravenous fluids after his lungs stopped working and he had seizures. Allan’s death would be a setback for Israel. Prisoners have promised “a day of rage” and the Al-Quds Brigade, the military wing of the Islamic Jihad movement in Gaza, has threatened to break the ceasefire.

At this stage, only forced feeding can save Allan’s life – but he has declared that he does not want any medical intervention at all. And Israeli doctors are respecting his wishes. The government has not been able to find doctors who will cooperate. A hospital in Beersheva refused to carry out blood tests without his consent. The government then transferred him to Barzilai Medical Centre, but its doctors have also refused.

Physicians for Human Rights Israel said in a statement: "Once Allan lost consciousness, medical ethics requires that his doctors act in accordance to their understanding of the patient's will and their discretion. PHR-Israel hopes and believes that the doctors in Barzilai Hospital have acted with respect and in accordance with Allan`s will. The situation we are now facing could have been avoided. It was possible to hold a dialogue and reach an understanding that would have prevented this deterioration.”

In July a law was passed authorising the force-feeding of prisoners. However the Israeli Medical Association has urged doctors not to obey it.

The Israeli government describes hunger strikes as blackmail. "Security prisoners are interested in turning a hunger strike into a new type of suicide terrorist attack through which they will threaten the State of Israel," said Gilad Erdan, Israel's minister of public security. "We will not allow 



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August
15
 

Progressive US bioethicist warns of euthanasia slippery slope

“Of all the arguments against voluntary euthanasia, the most influential is the ‘slippery slope’: once we allow doctors to kill patients, we will not be able to limit the killing to those who want to die. There is no evidence for this claim.” So wrote Professor Peter Singer in an article in 2009.

Some more recent reports agree. A group in the UK which called itself the Commission on Assisted Dying declared in 2010 that there was no evidence of a slippery slope. Earlier this year the Supreme Court of Canada explicitly rejected the idea of a slippery slope when it legalised assisted suicide.

So it is surprising to find America’s most quoted bioethicist, Art Caplan, warning that euthanasia in Belgium and the Netherlands is a slippery slope to abuse of vulnerable groups. In a comment in JAMA Internal Medicine on reports from the Netherlands and Belgium, he and co-author Barron H. Lerner, ring alarm bells. “Although neither article mentions the term slippery slope, both studies report worrisome findings that seem to validate concerns about where these practices might lead.”

Caplan was a strong supporter of a 2012 referendum in Massachusetts to legalise assisted suicide, and has been consistently "progressive" in his bioethics. However, he is deeply troubled by the data from Europe. “The slippery slope is not always a persuasive argument. However, these data and the other recent reports require that it be taken very seriously,” the article says. 

“… the increasing rates of euthanasia may alternatively represent a type of reflexive, carte blanche acquiescence among physicians to the concept of patient self-determination. Or worse, is it simply easier for physicians to accede to these sad and ailing patients’ wishes than to re-embark on new efforts to relieve or cope with their suffering? As one Dutch ethics professor has said, ‘The risk now is that people no longer search for a way to endure their suffering.’ In other words, are the Netherlands and Belgium turning to physicians to solve with euthanasia what are essentially psychosocial issues? …

“Although the euthanasia practices in the Netherlands and Belgium are unlikely to gain a foothold in the United States, a rapidly aging population demanding this type of service should give us pause. Physicians must primarily remain healers. There are numerous groups that are potentially vulnerable to abuses waiting at the end of the slippery slope—the elderly, the disabled, the poor, minorities, and people with psychiatric impairments. When a society does poorly in the alleviation of suffering, it should be careful not to slide into trouble. Instead, it should fix its real problems.”



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August
15
 

Mixed signals from Netherlands and Belgium about euthanasia

There is good news and bad news about euthanasia from the Netherlands and Belgium in JAMA Internal Medicine this week. But which is which depends on which side of the fence you sit.

From the Netherlands comes a report about how a euthanasia clinic which handled people whose regular doctor had rejected their request for euthanasia. The staff of the Levenseindekliniek are clearly more committed to euthanasia than the general run of Dutch doctors. However, they still turned away nearly half of the requests for euthanasia and physician-assisted suicide, mostly because these patients only had psychological suffering or were tired of living.

The clinic has a reputation for aggressively pushing euthanasia. Of the 162 patients it euthanized in 2012, the year of study, 8.2% were suffering from a psychological or psychiatric ailment and 7% were tired of life. It has a growing fleet of mobile vans (about 40 at the moment) which buzz around the countryside assessing patients requests for euthanasia. Nevertheless, it “granted fewer requests for euthanasia and physician-assisted suicide than are granted in the Netherlands on the whole”.

So the report – which was funded by the end-of-life clinic -- paints a picture of moderation and sound judgement on the part of euthanasia doctors.

From Flanders, the Dutch-speaking region of Belgium, comes a different picture. Belgium legalized euthanasia in 2002. Between 2007 and 2013, the prevalence of euthanasia there rose from 1.9% to 4.6% of all deaths. One in every 20 deaths is by euthanasia nowadays. The Flemish authors attempt to explain this enormous change in social mores.

First, they argue that “values of autonomy and self-determination” have become more important for the Flemish. And approval of euthanasia continues to rise, perhaps with the help of very positive reporting in the media. The second reason is that doctors are more willing to perform euthanasia. Like their fellow citizens, they esteem autonomy, but they also are confident that they will not be prosecuted. Euthanasia is treated “as part of the palliative care continuum, as formally expressed in a position statement from the Federation of Palliative Care Flanders”.

American observers were alarmed by this new data. “As the number of overall deaths like this becomes more frequent than 1 in 20, say, I think red flags really need to be raised,” the author of a commentary in same issue, Dr Barron Lerner told Reuters.

“Most of us were trained to never condone speeding death at all,” he added. “To the degree that some physicians are comfortable doing so, they will be in cases in which someone has an intractable physical suffering that will only persist or get worse; it is quite a leap for most of us to also see psychological suffering as a valid reason for speeding death.”



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August
15
 

Peter Singer debates Sydney Archbishop

If you can bear the bizarre squealing sounds at some moments in this video, it makes interesting viewing. It is a public debate between world-renowned bioethicist Peter Singer, a utilitarian and a staunch advocate of legalised euthanasia, and the Catholic Archbishop of Sydney, Anthony Fisher, a PhD in bioethics from Oxford who has published several books.

It was a very civil occasion. Both contestants wore their uniforms: the Archbishop in the flowing white robes of a Dominican friar and the ethicist in the slightly dishevelled look of an Ivy League professor (with an Order of Australia pin in his lapel).

Singer’s argument centred on the experience of Oregon, where, he said, years of experience have shown that there is no slippery slope. He criticised Fisher: “I have to say I am disappointed by what I can only regard as Anthony Fisher’s wilful refusal to look at the evidence about the countries that he has described.”

Fisher emphasised the dangers of bracket creep in Belgium. "My big question was: who dies in a euthanasia regime? It is, of course, the frail, elderly, sick, lonely, disabled, babies. So what seems to me to be ultimately at issue is what kind of community we will be in the future: will it be one in which the young and frail, the sick and sorry, the depressed and disabled are devalued, and more and more at risk? Or one where they will be protected and nurtured?"



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August
15
 

Why Dutch doctors are reporting fewer euthanised infants

Doctors in the Netherlands are permitted to give infants under 1 year a lethal injection if it has a low life expectancy and is suffering. The precise conditions for this controversial act are contained in the Groningen Protocol. This was drafted in 2004 and approved by the Dutch government. In some circles, this has become notorious, a symbol of the Dutch “culture of death”.

But according to a report in the Journal of Medical Ethics, it turns out that lethal injections are very uncommon and that the protocol is rarely invoked. Between 1997 and 2004, there were 22 such cases, all of them involving spinal bifida. Between 2007 and 2010, however, there was only one case -- for a rare skin condition.

With all the hullabaloo over the Groningen Protocol, why is it so rarely invoked? The study suggests two reasons. First, doctors may be falsifying their reports, or, to put it more charitably, have a different perception of what constitutes deliberately ending life. The study cites two cases of very sick infants. In one the doctor used a barbiturate and withdrew treatment; in the other, the doctor used morphine to induce “terminal sedation” and withdrew treatment. Both were reported as natural deaths.  

The second is that in 2007 the Netherland began offering ultrasound imaging at 20 weeks for pregnant women as a routine prenatal screening procedure . This allowed the mother to abort the child if it suffered from spinal bifida or chromosomal defects. Most women chose abortion for the former and about half for the latter. Those who do not abort the child are unlikely to request a lethal injection after birth. So, the authors observe, “The moment of deciding to end a child's life is shifted to pregnancy.” 



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August
15
 

Former Anglican head backs assisted suicide

The former Archbishop of Canterbury, Lord Carey, has appeared in a video made by the English assisted suicide lobby group Dignity in Dying. In it, he argues that it is possible to draft a law which will protect the vulnerable elderly from cruel and greedy relatives and that some patients will inevitably experience “excruciating pain”.

And he tells his fellow Christians that assisted suicide is a “profoundly Christian and moral thing” – even though he realises that some will be shocked by his break with the official Church of England policy.

From a theological point of view, Lord Carey seems to have crafted his own interpretation of the proper meaning of suffering for a Christian. “Some people have said on the issue of compassion that actually pain is a noble thing, to bear pain and to say that we are suffering with you is, in my view, a very poor argument indeed,” he says in the video. “There is nothing noble about excruciating pain and I think we need as a nation to give people the right to decide their own fate.



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August
15
 

A look at the risks of egg donation

“Maggie’s Story” is the fourth in a series of videos about “eggsploitation”, the dark side of egg donation. Maggie was a 19-year-old altruistic donor who donated eggs 10 times, even though the recommended limit is six.

The producers, the Center for Bioethics and Culture, say that she was used repeatedly for others’ gain, but when things turned bad, she was left on her own to navigate tests, treatments, surgeries, and an unknown prognosis. It is a controversial claim but the documentary makes a persuasive case for it.

Now Maggie feels that her idealism was exploited by the clinic. She was told how special she was, but she was never informed of the risks to her own health. These include ovarian hyperstimulation syndrome, infection, damage to ovaries, infertility, and breast, ovarian, or endometrial cancers. She was diagnosed with stage 4 breast cancer at the age of 32 and suspects that donation caused it. 



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August
15
 

Parents sue over intersex surgery

Pam and Mark Crawford   

In a first-of-its-kind lawsuit, a South Carolina couple is suing doctors for having performed genital reconstruction surgery on their adopted child without her consent.

Mark and Pam Crawford and the Southern Poverty Law Center (SPLC) are acting on behalf of MC. The Crawfords adopted him at about 2 years old. When MC was in foster care, at the age of 16 months, doctors decided to operate on ambiguous genitalia to create a distinctively female anatomy. However, as MC developed, he identified as a boy. He is now 10 years old.

“No one advocated for MC’s right to be free from unnecessary medical intervention at a time when the state was entrusted with his safety and well-being. It is high time all involved answer for the needless injury they inflicted on MC,” says the SPLC.

The lawsuit alleges that the state of South Carolina violated MC’s constitutional rights when acting as his guardian by removing his penis. It claims that his best interests were ignored and that he or his guardians unable to give informed consent. Doctors did not explain the dangers of this surgery, which include reduced sexual function and infertility and they did not make clear that the operation was medically unnecessary.

Since the 1950s, intersex infants have often been given reconstruction surgery. However, contemporary research suggests that many adults are dissatisfied with the results. The current trend is to postpone surgery until adolescence or adulthood, when the patient can give informed consent. 

"What happened to our son is something that is pretty devastating. We feel like this is the only way we can have an influence on it not happening again," Pam Crawford told the New York Times.



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August
09
 

Has “conservative bioethics” failed?

The hullabaloo over sting videos of Planned Parenthood officials discussing the price of foetal tissue may give the impression that bioethical conservatism is on the ascendant in America. Not so, says Jonathan Moreno, a leading bioethicist who is liberal both politically and bioethically.

“It's hard to find a conservative intellectual who emphasizes bioethics anymore, a sea change from the era of Bush 43, who devoted a chapter of his memoir, Decision Points, to the debate about human embryonic stem cells,” he writes in the Huffington Post. Instead, after a decade of debate, the liberals have won.

What seems clinched the deal for “liberals” was success. After human embryonic stem cells seemed to be useful (even if not as useful as scientists imagined), they became acceptable. Assisted suicide is spreading because baby boomers have to deal with the suffering of helpless parents. When the dust has settled on the Planned Parenthood videos, it seems likely, writes Moreno, that people will still support foetal tissue sales because it will be useful in fighting dementia.

There are other factors as well. Obamacare has survived a conservative onslaught and will entrench the expansion of government intervention for the common good.

Same-sex marriage is another. “The seismic shift in attitudes toward gay marriage has also changed the way many Americans think about what it means to be liberal …  And though gay marriage is not on its face a bioethics issue, it has a way of carrying other non-traditional family-making arrangements along with it, like in vitro fertilization and surrogate motherhood.

“Simply put,” says Moreno, “for all its passion and focus, the conservative bioethics project failed.”



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August
09
 

Nitschke’s comedy act a damp squib

DAVID BARTHOLOMEW / The Telegraph    

Judging from early reviews of Australian euthanasia activist Dr Philip Nitschke’s sally into stand-up comedy, he should stick with his day job. Mark Monahan, of the London Telegraph was savage in his review of the Australian euthanasia activist’s act at the Edinburgh Fringe Festival.

“ … the show is a head-in-hands artistic disaster: not funny, nor even (miraculously, given its essentially tragic subject matter), emotionally affecting. Throughout, Nitschke avoids almost all discussion of the complexities of the right-to-die debate, lazily assuming we’re all on-side, and swatting aside the various objections of Church, medical profession and police alike. What’s more, there’s a witlessly infantile, lip-smacking element to much of this that does him a thumping disservice.”

Nitschke’s show, “Dicing with Dr Death”, was described in the festival program as "teaching the funny side of the right to die debate" in "a rip-roaring ride through his 20 years working with life's one certainty: death". Unhappily, it was more instruction than comedy. He even forgot a few of his jokes. "It wasn't exactly deafening, the laughter," he told the Sydney Morning Herald.



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August
09
 

Nepalese men who sold kidneys are destitute after earthquake

Kidney vendors in Nepal exhibit their scars  

Although an article from the Kathmandu Post is a  weak reed on which to hang an argument, supporters of a legal organ market might want to reconsider after reading it. Journalist Nagendra Adhikari reports that the 100 or so Nepalese men in the Kavre district east of the capital who sold kidneys to traffickers to get cash for their families are not faring well after the devastating earthquake in April.

Victims, who had sold their kidneys to organ traffickers to sustain a living, are in no condition to reconstruct their ravaged houses owing to poverty and frail health.

Nabaraj Pariyar of Jyamdi, who had sold his kidneys*, said he is unable to work due to his health condition. “After our house got demolished by the quake we are staying under temporary makeshifts,” said Pariyar, adding that they are in a hope that somebody will help them construct a new shelter.

Another victim, Sita Tamang of Panchkhal-6 said her five-member family has been left in lurch after their house completely collapsed to rubble. “We have built a small hut but the monsoon has worsened our situation,” said Sita, adding that she hardly has any means to feed her two kids. Her husband Jit Bahadur had also sold his kidneys to human organ traffickers. Krishnapyari Nakarmi, who is working against human trafficking, confirmed that victims who had sold their kidneys have requested them to construct their houses. “Unfortunately, we are not in the condition to help them,” he said.

The Daily Mail also reported last month that in the nearby village of Hokse, which is reputedly nicknamed "kidney village" because most of the residents have sold their kidneys to smooth-talking brokers from India. Organ trafficking is illegal in Nepal. 

* This should probably read "kidney", as donating both would effectively be a death sentence. 



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August
09
 

Disdain for bioethics ignites controversy

Harvard star performer and leading American public intellectual Steven Pinker has set the cat amongst the bioethicists. In an op-ed in the Boston Globe Pinker argued that bioethicists should just “get out of the way” of life-saving research.

Blogs by bioethicists started to light up like Christmas trees. The controversy even prompted a summary report in Nature. But, surprisingly, quite a few academic bioethicists agreed with the drift of his argument.

Julian Savulescu, a utilitarian ethicist at the University of Oxford, and editor of the Journal of Medical Ethics, also felt that bioethics was holding up life-saving biomedical developments. “What we need is less obstruction of good and ethical research, as Pinker correctly observes, and more vigilance at picking up unethical research. This requires competent, professional and trained bioethicists and improvement of ethics review processes.” 

Alice Dreger, of Northwestern University Feinberg School of Medicine in Chicago, a respected bioethicist and a public intellectual, also agreed, with some caveats: “As an historian of medicine and science, I’d have to agree that people have often been wrong about the supposed doom that will befall us when we achieve new biomedical technologies.”

Russell Blackford, of the University of Newcastle (Australia), wrote: “The view that he has stated, admittedly in a polemical way, is a perfectly respectable one within the field of bioethics. In fact, as a philosophical bioethicist I have a great deal of sympathy for it. Pinker claims - and I agree - that many of the current rules, and the practices through which they are interpreted and applied, have swung too far in the direction of constraining research.”

Disagreement centres on two issues. The first was Pinker’s disdain for woolly words like “human dignity” and “sacredness”. Approaching bioethics as a non-nonsense consequentialist, Pinker has no respect for dithering dignitarians. One of these, Matthew Beard, an Australian philosopher, responded that “when scientists' research is motivated by humanitarian goals. It makes it easier to justify dismissing important ethical goals. With apologies to Steven Pinker, we can’t sacrifice ethics on the altar of scientific progress.“

The other was Pinker’s lack of realism. Scientists do need a watchdog.  

Mildred Z. Solomon, president of The Hastings Center, an American bioethics think tank, said that Pinker could not be more wrong in telling bioethicists to step aside:  “Wisdom demands, and democracy requires, not stepping away, but standing up for thoughtful reflection and public engagement.”

Daniel Sokol, an ethicist and barrister in London, wrote: “Knowing what we know about human nature, to let researchers evaluate the ethics of their own research is akin to the police judging other policemen or doctors judging other doctors. Virtually everyone would, in good faith but quite wrongly, consider their research ethically exemplary.”

At The Incidental Economist, Canadian psychologist Bill Gardner was also sceptical: “The only normative framework that has weight, by his lights, are the mortality and morbidity of disease. Of course mortality and morbidity are exceptionally important. But if that is the only framework that matters to Pinker he is in a very small minority.”



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August
08
 

Swiss court refuses to recognise surrogacy

Switzerland’s highest court has refused to recognise surrogacy. The Federal Court, which sits in Lausanne, was reviewing a case in which two male homosexuals obtained obtain a child with a surrogate mother living in California. Shortly before the child was born in 2011 the two men entered a civil partnership.

In the United States, both men were registered as fathers of the child, and when they returned to Switzerland, the canton of St Gallen ratified the US decision. However, the Swiss justice office objected. Arguing that Swiss law only allowed a man with a genetic link to the child to be recognised as a father, it appealed against the Swiss court’s recognition of the relationship.

The Federal Court agreed, stating that it was unlawful to list a non-biological father as a father in the civil register. This was “plainly incompatible” with Swiss legal and ethical values. The court reasoned that “a child must be protected from being downgraded to a commodity which can be ordered from a third party”.

The court also took a dim view of surrogate motherhood, saying that women’s bodies should not be commercialised. Swiss law ban any form of surrogacy, no matter what the woman’s marital status may be. “According to Swiss civil law, a pregnant woman cannot actively abandon her rights regarding the child before it is born” it said.

The lawyer representing the two men criticised the decision. The decision "ignores the interests of the child and the living reality of both men, who have been living together as a family since 2011,” she said. The verdict would leave the child without adequate legal safeguards, especially if the couple separated or if the biological father were to die. 



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August
07
 

Court tussle over right to euthanase Dutch woman with dementia

Sorry, we missed this euthanasia story from the Netherlands. It deserves to be more widely known.

Cobi Luck on the day of her death.   

An 80-year-old Dutch woman suffering from dementia was euthanased on April 24 after a sternly-worded court order addressed to her nursing home.

The woman, who was later identified as Cobi Luck, had a stroke two years ago. She became paralysed and totally dependent on carers in Ter Reede dementia specialist care home in Flushing. But when she asked her son to get the nursing home to organise euthanasia, the director refused. In his opinion, supported by the woman’s own doctor and a psychologist, she was not mentally competent.

Ignoring the advice of the nursing home, Ms Luck’s family supported her request, so they called in Levenseindekliniek (the End of Life Foundation). This organisation arranged for two doctors and a psychiatrist to assess her condition. They concluded that she was competent, or competent enough, to request euthanasia. The nursing home refused to release Ms Luck into the hands of Levenseindekliniek, so the family sought a decision from a court.

The position of the nursing home, which has a Christian inspiration, was that Ms Luck only spoke about euthanasia after her family had paid a visit. She still appeared to enjoy life and made comments which were not consistent with a desire for euthanasia. Its staff knew her well and believed that she was not competent to make such a momentous decision. It stressed that people like Ms Luck were very vulnerable.

Her family found this “outrageous”. Their position was that many people never mention their desire for euthanasia unless they are asked. Besides, three doctors had assured them that Ms Luck knew what she was doing. A judge sitting in an emergency session in Utrecht decided in favour of the family and Levenseindekliniek. Judge Sap told Earl Ter Reede, chairman of the nursing home, that he had to respect the wishes of the woman. 

“It’s not a question of incapacity. You simply do not want to accept the decision,” the judge said. “You are putting yourselves in this situation on your own authority. I am observing the principle that you must respect this woman’s wishes. It’s the final thing you can do for her.”

This was the first time in the history of Dutch euthanasia legislation that an institution had refused to allow a patient to be euthanased. From a legal point of view, the most interesting feature of the case is that the judge gave more weight to the opinion of the doctors at the Levenseindekliniek than the woman’s own medical staff because they had "specialized medical knowledge and experience".

A day after the court order Ms Luck was taken from the care home and was given a lethal injection at the Levenseindekliniek. 



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August
07
 

Incoming World Medical Association head under a corruption cloud

Ketan Desai after his hearing at a courthouse in Lucknow on June 27   

The World Medical Association, which is supposed to encourage high ethical standards among doctors, is in turmoil over its incoming president, Dr Ketan Desai, of India.

Dr Desai, a 58-year-old urologist, is fighting allegations that he corruptly conspired to lobby to allow a medical school to add more students. India’s legal system often works at a glacial pace, so charges which were brought in 2009 and 2010 are unlikely to be resolved by 2016, when he is scheduled to take office.

The WMA represents doctors in over 100 countries and the prestigious British Medical Association and the American Medical Association are both affiliates.

Reuters journalists have been investigating the imbroglio. Dr Desai told them in a letter: “I am and have been innocent” and that “in not a single case any allegation against me has been proved.” He insist that he is a victim of “a continuous malignant and malicious campaign … of absolutely false and concocted allegations.”

However the Reuters journalists are sceptical. Although Dr Desai’s supporters believe that all charges have been withdrawn, it appears that this is not the case. The WMA appears to have relied almost entirely on information supplied by Desai and the Indian Medical Association – of which he was president from 2001 to 2002.

“The whole force of the WMA is its moral authority,” Caplan told Reuters. “You can’t have a compromised leader, you just can’t.... If you push against torture, if you try to defend doctors in jeopardy from totalitarian regimes, if you try to speak up about getting more care for the poor, people will just point toward your president and say: ‘Why should we care? You have a leader who is morally suspect. You’re not in a position to lecture us about anything.’”



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August
01
 

Psychologists shaken by report on torture program

The use of torture to extract information from terrorist detainees under the Bush Administration continues to reverberate. A searing report on collusion of officials in the American Psychological Association with the government has led to a crisis in the organization. Next weekend’s annual conference in Toronto will be a fiery one.

The independent report commissioned by the APA documents how APA and government officials created a legal and ethical justification for the torture program, which relied on health professional monitoring of abusive interrogations to claim that they were “safe, effective, and legal.”  

What concerns the APA rank and file is that the people responsible for working hand in glove with the government were not “rogue officials”, but psychologists working at the top of the APA. The leading figure was the APA’s ethics director, Stephen Behnke. Others involved included the president, the president-elect, the CEO, deputy CEO, general counsel and the communications director.

“Rather than uphold the principle of ‘do no harm,’ APA leadership subverted its own ethics policies and sabotaged all efforts at enforcement,” said Donna McKay, executive director of Physicians for Human Rights, a persistent critic of the APA’s policy.

The report, written by David Hoffman, a former federal prosecutor, concluded that “APA’s principal motive in doing so was to align APA and curry favor with DoD. There were two other important motives: to create a good public-relations response, and to keep the growth of psychology unrestrained in this area.”

It also appears that APA officials may have engaged in criminal behaviour by:   

  • Colluding with the US Department of Defense, the CIA, and other elements of the Bush administration to enable psychologists to design, implement, and defend the post-9/11 torture program;
  • Allowing military and intelligence personnel to write APA ethics policies regulating their own conduct to ensure they were “covered” for their roles in the torture program;
  • Engaging in a coordinated campaign to cover up the collusion and blocking attempts to oppose these policies within the APA; and
  • Obstructing and manipulating ethics investigations into psychologists involved in the torture program.

“As mental health professionals, our first obligation must be to our patients,” said Dr. Kerry Sulkowicz, a psychiatrist with the Physicans for Human Right. “The APA’s collusion with the government’s national security apparatus is one of the greatest scandals in US medical history. Immediate action must be taken to restore health professional ethics and to ensure this never happens again.” 



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August
01
 

You’ve heard of half-wits. How about 5%-wits?

The comfortable certainty of having at least half a brain is unshakable. It is so beyond dispute that the philosopher Ludwig Wittgenstein used it as an example of knowledge that is certain even though we have no sensory experience to confirm it. However, biologist Donald R. Forsdyke, of Queen’s University, in Canada, points out in the journal Biological Theory that we need to account for cases of people who have led normal lives without a brain. Or, to be more precise, about 5% of a normal brain.

Brain scans of some recovered hydrocephalics show a vast area filled with fluid where other people had brain tissue. Their brain, what is left of it, has been compressed around the skull. Yet one of them went on to get a first class honours degree in mathematics. Clearly information-related content does not scale with brain size.

The conventional explanation for this is that brains have enormous redundancy and plasticity.  But Forsdyke is sceptical: “The drastic reduction in brain mass in the hydrocephalic cases seems to demand unimaginable levels of redundancy and/or plasticity—superplasticity. How much brain must be absent before we abandon these explanations and admit that the standard model, however incarnated, will not work?”

So what other explanations could there be?

Forsdyke lists three. First, “Information relating to long-term memory is held within the brain in some chemical or physical form consistent with current knowledge of brain chemistry and physiology”. Second, “Information relating to long-term memory is held within the brain in some extremely minute, subatomic, form, as yet unknown to biochemists and physiologists.” And even more controversially, “Information relating to long-term memory is held outside the brain.”

The last of these, extracorporeal information storage, appeals to Forsdyke. Invoking Sherlock Holmes, he says, “How often have I said to you that when you have eliminated the impossible, whatever remains, however improbable, must be the truth?”

At the Neuroskeptic blog, however, it is argued that there is still no need to discard medical textbooks. The author says that the brain’s grey matter seems to be intact. The missing white matter, which normally provides connectivity, may be present but greatly compressed. More investigation is needed.



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August
01
 

Planned Parenthood under fire over use of aborted tissue

The use of foetal tissue in biomedical research has become an incendiary political issue in the United States. Four videos have been released by freelance investigative journalists working undercover which purport to show that abortion provider Planned Parenthood (PP) is illegally selling foetal body parts.

Planned Parenthood has vehemently denied that it is breaking any laws by supplying tissue from abortions to tissue companies. It also points out that scientists have used foetal tissue to develop life-saving vaccines for polio, rubella, and chicken pox.

At stake are hundreds of millions of dollars in government funding. According to the news site Politico, the annual total is US$528 million. Some Senators and Congressmen are vowing to do everything they can to defund Planned Parenthood. “This is one of those line-in-the-sand type of issues,” Rep Rick Mulvaney, a South Carolina Republican told Politico.

Funding for PP has always been a divisive issue, but the videos made by a group called the Center for Medical Progress (CMP) are explosive. Four have been released so far and the spokesman for CMP, David Daleiden, says that he hope to release another 8 or 10.

A California court has issued an injunction banning the release of a fifth video.

Several ethical issues crop up in media coverage of the controversy. First, CMP maintains that by charging tissue companies for body parts from aborted foetuses, PP is breaching Federal laws which ban the sale of human organs. PP responds that it is just charging small amounts to cover handling costs.

Second, the sting videos are a reminder of on-going debate over the use of aborted tissue in medical research. Even bioethicist Art Caplan, who does not oppose abortion, has some reservations. "It shifts the focus away from the women and their needs," he told the website Vox. "It makes Planned Parenthood or any abortion clinic look like it's trying to generate some other source of income, and it puts the clinic in a position that generates a lot of unease."

Third, the victims of the sting complain that this is unethical journalism and that privacy laws have been violated. After similar incidents in the past, even some abortion foes had misgivings about gaining information under false pretenses.  

Some scenes in the videos are disturbing, even stomach-turning. The first features a lunchtime conversation with Deborah Nucatola, PP’s senior director of medical services. In it she discusses prices for specimens and how an abortion technique can be varied to extract more intact body parts. The second features Mary Gatter,  president of PP’s Medical Directors Council who discusses similar issues. In the third, a former PP employee alleges that it profits from the transactions. In the fourth, employees sort through body parts in a dish.

The release of the videos was well-timed. July is a slow news month and politicians are in the middle of preparations for next year’s election. The controversy offers Republicans a splendid opportunity to embarrass President Obama, a firm friend of PP. Each video ratchets up seriousness of the allegations and the yuk factor, so some very gruesome viewing could lie ahead.

Predictably, the allies of PP are digging furiously for dirt on Daleiden and the CMP. Pro-life supporters, on the other hand, are focusing on the images of baby body parts being sorted in a pie plate and offensive language by PP representatives (“… we’ve been very good at getting heart, lung, liver, because we know that, so I’m not gonna crush that part, I’m gonna basically crush below, I’m gonna crush above, and I’m gonna see if I can get it all intact.”).

Where is the debate going? It depends to some extent on whether sorting through body parts outrages the public as much as it outrages politicians. If Google is any guide, the public may not be all that interested. A search for “Planned Parenthood videos” brought up 12 million results. A search for “Cecil the lion”, who was killed in Zimbabwe by a dentist from Minnesota, brought up 51 million. 



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August
01
 

At last, someone with a plan for the silver tsunami

A TV show called “If Katie Hopkins Ruled the World” debuts next week in Britain. Ms Hopkins, a 40-year-old reality TV celebrity and a columnist for The Sun newspaper is what envious journalists call a “professional troll”. Whenever she opens her mouth, she hogs the headlines. The "queen of quotes" recently called for gunships to deter illegal migrants into Europe, calling them “feral humans” and “cockroaches” who are “spreading like norovirus”. 

Now she has swiveled her guns to take aim at the elderly. In a radio interview promoting her new show, she declared “We just have far too many old people”. If she were in charge, she knows what to do: “It's ridiculous to be living in a country where we can put dogs to sleep but not people,” she told her 69-year-old interviewer. She believes that the problem is readily solved.

“Easy. Euthanasia vans – just like ice-cream vans – that would come to your home. It would all be perfectly charming. They might even have a nice little tune they'd play.

“I mean this genuinely. I'm super-keen on euthanasia vans. We need to accept that just because medical advances mean we can live longer, it's not necessarily the right thing to do.”

Ms Hopkins is a lean mean vilification machine but her views resonate with many people. Some 300,000 people signed a petition demanding that The Sun sack her and The Sun did not sack her. Instead she now has her own television show. And if she wants to follow up her idea of euthanasia vans playing Greensleeves, she can always ring up the Dutch right-to-die group NVVE. It is already offering the service



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August
01
 

A wild swing at bioethics

A luminary at Harvard who is one of America’s leading intellectuals has aimed a haymaker at the whole field of bioethics. Writing in the Boston Globe today, celebrity psychologist Steven Pinker says: “the primary moral goal for today’s bioethics can be summarized in a single sentence. Get out of the way.”

Pinker, the author of best-sellers like The Better Angels of Our Nature and How the Mind Works, feels that the job description of contemporary bioethicists is to slow down biomedical progress or to stop it altogether. His target is not merely conservative ethicists like Leon Kass, with whom he had a famous dust-up in the National Review in 2008 over “the stupidity of dignity”, but all bioethical discourse.

“A truly ethical bioethics should not bog down research in red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as ‘dignity,’ ‘sacredness,’ or ‘social justice.’ Nor should it thwart research that has likely benefits now or in the near future by sowing panic about speculative harms in the distant future. These include perverse analogies with nuclear weapons and Nazi atrocities, science-fiction dystopias like ‘Brave New World’’ and ‘Gattaca,’’ and freak-show scenarios like armies of cloned Hitlers, people selling their eyeballs on eBay, or warehouses of zombies to supply people with spare organs. Of course, individuals must be protected from identifiable harm, but we already have ample safeguards for the safety and informed consent of patients and research subjects.”

Should we be cautious? Not if it means slowing down the inevitable spread of progress.

“Some say that it’s simple prudence to pause and consider the long-term implications of research before it rushes headlong into changing the human condition. But this is an illusion. First, slowing down research has a massive human cost. Even a one-year delay in implementing an effective treatment could spell death, suffering, or disability for millions of people. Second, technological prediction beyond a horizon of a few years is so futile that any policy based on it is almost certain to do more harm than good.”



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August
01
 

Hers to choose

The availability of both IVF and abortion creates some counterintuitive situations. The latest issue of Cosmopolitan – not the world’s leading bioethics journal, but a good source of first-person narratives – features a Minnesota woman who aborted her first child, had one naturally, three through IVF, and then aborted an unexpected natural pregnancy. 

Hannah Stein first fell pregnant at 22 before she married her partner Patrick. She says, “I felt too young, and there were too many other things I wanted to do first. I did not feel settled enough in my life to start having children.” So she had an abortion and shortly afterwards married Patrick.

Their first child came soon afterwards. But having a second was harder. So they resorted to IVF. She became pregnant twice, the second time with twins. At one stage, she miscarried, which distressed her immensely, even though the abortion did not.

“… regarding the miscarriage, I mourned, not because I thought it was a death of a child, exactly, but because I really wanted to have a child and I thought I was having one and then that opportunity was gone.”

Then, unexpectedly, she fell pregnant again. She opted for an abortion, convinced, as Cosmopolitan notes, “that a person should be able to choose if she wants to end a pregnancy.” 

“The very idea of having another child at that point was terrifying to both of us. We had two 1-year-old babies and we had two older children. We were both working. There was no way. There was no energy, period, at that time. We were holding on by our fingernails.”

How could she justify the abortion of a naturally-conceived child when she had endured the agony of IVF? It’s a good question, she says:

“It's like saying, ‘Well, you really wanted a Snickers bar this morning, and then you ate three Snickers bars, and now how can you not want a Snickers bar? There's one right here.’ It's like, ‘Well, yeah, I really wanted one this morning, but I have three now, and it's more than enough.’ …

“I don't need to have another one of my own, because I understand that that baby is only a baby for a year, and they grow up and they still need things for 18 years, and I already have enough on my plate with the four that I have.” 



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August
01
 

‘Foreigners do not understand us’

Raphael Cohen-Almagor, of the University of Hull in the United Kingdom, is a world expert on euthanasia in the Netherlands and Belgium. He recently contributed an article to the JOurnal of Medical Ethics on one of the most worrying aspects of the euthanasia in Belgium—the deliberate shortening of lives of some patients without their explicit voluntary request. In this interview with BioEdge, he explains some of his concerns.

BioEdge: Are the figures of euthanasia cases rising?

Raphael Cohen-Almagor: Studies have shown a constant increase in registered euthanasia cases, predominantly in the Flemish (the Dutch-Flemish speaking part) of Belgium. Approximately one of seven terminally ill patients dying at home under the care of a general practitioner (GP) expresses a euthanasia request in the last phase of life. The annual figures are constantly rising: 235 in 2003; 495 in 2007; 704 in 2008, and 1,133 in 2011. In 2012, there were 1,432 cases and in 2013, 1,807 euthanasia cases were reported.

Are you sure about the statistics? The trends are confusing. You observe that in 2007 the use of life-ending drugs with the intention to shorten life and without explicit request occurred in 1.8% of deaths but in 2013 it was 1.7% of deaths. So contrary to what you have said, the situation seems to be improving, not getting worse, isn't it?

Research has shown that in 2007 the use of life-ending drugs with the intention to shorten life and without explicit request occurred in 1.8% of deaths and that in 2013 it was 1.7% of deaths. This is a slight improvement.

However, the overall situation is worrying. The enactment of the Euthanasia Act in 2002 was followed by an increase in almost all types of medical end-of-life practices: euthanasia, intensified alleviation of pain, withholding or withdrawing life-prolonging treatment, and continuous and deep sedation until death. The latter practice is especially worrying: In 2007, 14.5% of all deaths in Flanders were the result of continuous deep sedation until death. This is a significant increase compared to the number of cases, 8.2%, six years earlier.

When the Euthanasia Act was legislated, it was designated mainly for competent adults, capable and conscious at the time of their euthanasia request. Evidence has shown that now euthanasia has been stretched to incompetent patients, demented patients, psychiatric patients as well as to patients who are said to be “tired of life”. 

Furthermore, in February 2014, the Belgian parliament voted to extend the euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering “constant and unbearable pain”, and whose parents and health professionals agree with the decision.

Thus the scope of end-of-life practices has been enlarged far beyond the good intentions of the legislature in 2002.

How do doctors justify involuntary euthanasia? On the basis of relieving suffering? Of saving money? Of sparing the feelings of relatives?

I have raised the question of economic considerations in the decision-making process time and again with Belgian experts. I was repeatedly told that saving money is never the issue. Research indicates that beneficence is often the guiding principle. Physicians wish to ease patients’ suffering and to ensure a relatively comfortable death.

Worryingly, sometimes they give priority to the best interests of the patient’s relatives over and above the patient’s best interest, wishing to alleviate the patient’s “burden” off the shoulders of the next of kin.

You say that “social and peer pressure makes it difficult for those who oppose euthanasia to uphold their position in the liberal culture that has been developing”. Does this mean that it is hard to work as a doctor or nurse in Belgium unless you support euthanasia?

In 2004 I published my book Euthanasia in the Netherlands: The Policy and Practice of Mercy Killing in which I asked Dutch scholars about “culture of death” in their country. My research in Belgium indicates some striking similarities.

As is the case in The Netherlands, the general atmosphere in Belgium is supportive of euthanasia. The Netherlands and Belgium are liberal societies, with strong emphasis on autonomy. The majority of people in both countries support the idea that patients should be able to decide the time of their death with the help and support of the medical profession.

Many people in many countries, myself included, support this idea. However, I do not think that the Dutch and Belgian public are fully aware of the whole picture in implementing the euthanasia policy, and of the many problematic aspects of the euthanasia practice in their respective countries.

In both countries, the establishment view is pro-euthanasia, and one might be harmed if one takes a contrary view. There is pressure on medical professionals to support euthanasia. In both countries, those who are opposed to euthanasia are tagged and dismissed as “religious fundamentalists” who fail to speak truth to reason.

Some Dutch and Belgian scholars and journalists struggle with my critique of the policy and practice of euthanasia as they cannot tag me as a “Catholic fundamentalist” and because I initially supported euthanasia on moral grounds and changed my mind on practical, policy grounds, restricting my plea to physician-assisted suicide. I changed my mind because of the abuse that is recorded in both countries. A fine line distinguishes between moral reasoning and policy making. I am unable to adhere to abstract moral reasoning while ignoring facts.

To illustrate the societal pressure on those who object to euthanasia let us consider the following example: Carol is an accomplished medical ethicist. She is opposed to euthanasia. In her university there is an opening for the chair in medical ethics. She submits an application. Her chances to be nominated are slim to none because thecChair serves as a consultant in euthanasia cases referred to her by hospitals affiliated with the respective university. If it is known that the professor objects to euthanasia, then there would be no point in consulting with her on this issue at a time when euthanasia does take place in hospitals.

Hence, it is necessary to fill important posts with like-minded people who will maintain the positive climate towards euthanasia. The only exceptions are Catholic universities.

Do Belgians realize that involuntary euthanasia is common in their country? How about the medical profession and the police?

Many Belgian and Dutch scholars and professionals who have reservations about the policy and practice of euthanasia voice their frustration in trying to raise questions, air doubts, and open debates about recorded problems.

The media on the whole are not interested. I recently granted a long interview to a Belgian daily newspaper and, as far as I know, not a word was published. The criticisms are voiced mainly outside Belgium and The Netherlands. These criticisms are dismissed by advocates of euthanasia because “foreigners do not understand us” and, anyway, “the situation is probably worse in other countries”. In Belgium and in The Netherlands, so the claim goes, “we are conducting our affairs in the open, in a candid and transparent way while no data is available for other countries”.

I have heard these arguments again and again. In fact, the Belgian, like the Dutch, actually do not welcome criticism and are quite conservative in their liberal attitude to euthanasia. Both countries are protective of their systems and believe that their euthanasia policy is correct and just.

Curiously, some of the leading Belgian scholars on euthanasia publish only the facts without any interpretation or reflection. I am yet to hear a convincing argument for this so-called “neutral” approach. I say so-called “neutral” because silence is also a stand.

Belgian (and also Dutch) people pride themselves on their openness, on their ability to discuss and debate life-and-death decisions openly. In this same spirit, they should openly debate the more intricate and problematic aspects of the euthanasia policy while having adequate knowledge about the various end-of-life practices.

The full picture of the data should be disclosed to the public. Transparency is indeed of vital importance in promoting and safeguarding patient’s autonomy at the end-of-life.

Does Belgium offer lessons for other countries which are considering euthanasia or assisted suicide? 

There are many lessons to be learned from Belgium, both positive and negative. Let me mention only some of them, and I start of the positive:

The practice of medicine should be deontological rather than utilitarian. Patient’s autonomy and preferences should be respected as much as possible. The Belgian medical system on the whole manifests that.

Belgian palliative care has been developing and continues to develop. This is a great positive in the Belgian medical system. The World Health Organization (WHO) defines palliative care as the “active, total care of patients whose disease is not responsive to curative treatment,” maintaining that control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The medical staff must examine whether it is possible to prevent or to ease the pain by means of medication and palliative care.

Belgian scholars continue to conduct surveys about the euthanasia practice and produce consecutive reports, also in English. This is certainly a good practice. Other countries should also strive to compile extensive reports of their own end-of-life practices.

The practice of a truly independent second opinion to verify the patient’s diagnosis and his/her voluntary wishes is a good example to follow. The Belgian themselves are still challenged to implement this practice in full for all patients but they are constantly trying to improve.

The insistence that the final act should performed by physicians is correct. The Belgian medical establishment is struggling with this directive as well; sometimes the practice is conducted by nurses, but professionals are aware of the problem and trying to remedy this.

Much of the euthanasia practice of ending life in Belgium and in The Netherlands is dependent on general practitioners. Physicians are increasingly aware of the very powerful role their recommendations can play in people's treatment choices, and of the undue ways their recommendations can influence patients. There is growing understanding of the importance of spending time with patients and having a candid conversation with them; getting patients to talk out loud about their values before making treatment recommendations. Quality care requires investing time and attention, opening and maintaining two-dual way physician-patient communication of listening and advising.

Physicians realise that often this type of conversation will make it easier for physicians to determine what recommendation is most appropriate for a patient and whether the patient is comfortable deciding what to do without receiving a recommendation.

The fact that physicians may not demand a special fee for the performance of euthanasia is appreciated.

Physicians should not be coerced into taking actions that conflict with their conscience. No coercion should be involved in the process. Conscientious objection should be respected.

On the negative side, the major lesson to learn from Belgium, and also The Netherlands, is not to legalize euthanasia. Despite the best intentions and the existing safeguards against abuse (which can be improved) both countries record too many instances of abuse.

The final act should be left in the hands of the patient, not in the hands of the physician. Unfortunately, some physicians are abusing the power given to them; they act paternalistically against the best interests of their patients.

About half of euthanasia cases are not reported. This lack of notification of euthanasia cases is worrying. Research reveals that physicians failed to notify the Federal Control and Evaluation Commission because they “had forgotten”; because they did not label cases that should be labelled euthanasia as such; because they found the procedural requirement of notification “burdensome and not useful”; because they felt euthanasia was a private matter, or because they failed to understand the legal requirements. More need to be done to study the differences between Flanders and Wallonia (Roman Catholic Walloon physicians find it more difficult than their Flemish colleagues to report euthanasia cases) and to clarify the logic of the Euthanasia Act to practitioners, explaining why the procedural requirements of the law are no less important than the substantive requirements.

Curiously, little is known about end-of-life practices in Wallonia. There is an urgent need to know how medical professionals in this region are conducting their affairs.

It is revealing that no physician has been charged for malpractice or abuse of power since the Euthanasia Act was introduced in 2002. The system is very protective of its physicians also when they act independently of the patient’s best interests.

Also worrying is the potential pressure on euthanized patients to donate their organs. The fact that euthanasia donors account for a very significant percentage of all lung donors should not go unnoticed.

Research has shown that there is a grey area in end-of-life care between treatments administered to relieve pain and suffering, and treatments aimed to shorten the life of the patient. Transparency and proper documentation are vital. They may serve as a safeguard against potential abuse. Records should be kept of the timing and doses of the drugs in use, and the physician’s intention at each step. Such documentation may reduce the use of inappropriate doses of medication given in the guise of relieving pain and suffering but actually intended to bring about the death of the patient. As a control mechanism, pharmacists should be required to file a report every time lethal medications are sold and records should be kept about their use.

Looking at the short history of the euthanasia laws, policy and practice, in Belgium and also in the Netherlands may lead us to think that there is something intoxicating about the practice that blinds the eyes of decision-makers, leading them to press forward further end-of-life practices without paying ample attention to caution.

In both countries, one cautionary barrier after the other are removed to allow greater scope for euthanasia. The logic of the 2002 Euthanasia Act that spoke of adults or emancipated minors was undermined in 2014 when the Belgians extended the law to all minors.

Although some patients are euthanized without explicit request (as mentioned, 1.7% of all deaths in 2013) the Belgians are not eager to push for more stringent control mechanisms. Quite the opposite: The scope of tolerance towards the practice of euthanasia is enlarged so that yesterday’s red light becomes obsolete today, and as this one is removed practitioners and law-makers are already debating a further step and other groups (patients who are “tired of life”, children, patients with dementia) to be included within the more liberal euthanasia policy.

This is quite astonishing as human lives are at stake. What is required is a careful study, accumulation of knowledge and data, addressing the above concerns, learning from mistakes and attempting to correct them before rushing like frenzy to introduce more liberal ways to euthanize patients. Haste makes waste.

Raphael Cohen-Almagor (DPhil., St. Catherine’s College, Oxford) is Professor and Chair in Politics at the University of Hull, UK. He was Assoc. Professor at the University of Haifa, Israel; Visiting Professor at UCLA and Johns Hopkins; Fellow, the Hastings Center and the Woodrow Wilson International Center for Scholars, USA; Visiting Scholar, Vrije Universiteit, The Netherlands. Raphael established the Medical Ethics Think-tank at the Van Leer Jerusalem Institute (1995-1998) and was among the drafters of Israel’s The Dying Patient Law (2005). Among his many books are The Right to Die with Dignity (2001), Euthanasia in the Netherlands (2004), Editor, Medical Ethics at the Dawn of the 21st Century (2000), Editor, Moral Dilemmas in Medicine (2002, Hebrew), and Confronting the Internet's Dark Side: Moral and Social Responsibility on the Free Highway (2015). Raphael is now writing a book about end-of-life practices in different countries. Twitter: @almagor35. Web: http://www.hull.ac.uk/rca. Blog: http://almagor.blogspot.com  



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June
28
 

Face recognition technology may threaten privacy

Imagine that you are a pastor of an American megachurch. You need to track attendance of your flock for spiritual and financial purposes, but your records are always inaccurate. How about face recognition? Spooky as it sounds, a company called Churchix is marketing software which will track faces in a crowd and add their names to a database.

This is just one of the applications of facial recognition software which has privacy advocates up in arms. “Various applications are traditionally used by security organizations, but in recent years there’s an increasing demand for commercial civic applications,” says one company.

The US government wants to a voluntary, enforceable code of conduct  for commercial purposes, but, according to New Scientist, discussions between privacy advocates and industry representatives broke down almost immediately. They could not agree on the answer to the simple question: “If you are walking down the street, a public street, should a company be able to identify you without your permission?"

One company promises to "boost sales by recognising high-value customers each time they shop" and to send "alerts when known litigious individuals enter any of your locations".

"What facial recognition allows is a world without anonymity," says Bedoya. "You walk into a car dealership and the salesman knows your name and how much you make. That's not a world I want to live in," says Alvaro Bedoya of the Georgetown University Law Centre in Washington DC.

"Companies are already marketing products that will let a stranger point a camera at you and identify you by name and by your dating profile," says Bedoya. "I think most reasonable people would find this appalling."

"This is just the beginning of a very important conversation," Kate Crawford of Microsoft Research told New Scientist. "Facial recognition is one of many remote biometric sensing technologies. There's also gait detection, iris scanning, heartbeat recognition and many others. We need a deeper discussion of the social and ethical implications of these capacities as well as who gets to use them, where and how."



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June
27
 

Dutch paediatricians back euthanasia for under-12s

Dutch paediatricians are backing euthanasia for children aged from 1 to 12. In a position paper released on June 19, the NVK (the Dutch Paediatricians’ Association) recommended that deliberate termination of life be available when palliative care is ineffective.

“We feel that an arbitrary age limit such as 12 should be changed,” said Professor Eduard Verhagen, of Groningen University, a long-time champion of euthanasia for children. “Each child's ability to ask to die should be evaluated on a case-by-case basis.”

Belgium has already removed the age limit on euthanasia and the Netherlands is lagging behind. Under the current rules, children between 12 and 16 must have parental approval, while euthanasia is banned for those under 12 – except for children under 12 months, who can be euthanased involuntarily.

“If a child under 12 satisfies the same conditions, paediatricians are currently powerless. It's time to address this problem,” said Professor Verhagen.

The guidelines suggest that the NVK does not believe that anyone will abuse the proposed protocols. “The NVK considers it a great good that the process of decision-making about the end of life is so careful in our country,” they say. 



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June
27
 

The Economist to campaign on Belgian model of euthanasia

 

Editor-in-chief of The Economist, Zanny Minton-Beddoes   

The world’s most influential news magazine, The Economist, has a new editor-in-chief, Zanny Minton-Beddoes, its former business affairs editor. One of the very first issues on which she has chosen to campaign is the legalization of euthanasia. This week's cover story is "The right to die: why assisted suicide should be legal". It is illustrated by a snuffed candle with a smoking wick.  

In a podcast Minton-Beddoes says that there are three reasons for her stand. First, asssisted dying is  one of the great moral questions of our time, especially in the light of ageing populations around the world. Second, it fits neatly into The Economist’s philosophy of promoting autonomy and reducing government meddling. And third, public opinion can truly make a difference.

So, this week's leader (the editorial) contends that while life may be sacred and suffering may confer its own dignity, autonomy is the truest manifestation of human dignity: 

The most determined people do not always choose wisely, no matter how well they are counselled. But it would be wrong to deny everyone the right to assisted death for this reason alone. Competent adults are allowed to make other momentous, irrevocable choices: to undergo a sex change or to have an abortion. People deserve the same control over their own death. Instead of dying in intensive care under bright lights and among strangers, people should be able to end their lives when they are ready, surrounded by those they love.

The headline on the cover is misleading. Minton-Beddoes and The Economist are not merely backing assisted suicide; they are urging readers to accept the boldest scheme on offer: Belgium’s euthanasia for almost anyone who asks for it. No chronic or terminal illness would be required. Mentally ill and depressed patients whould be eligible. Lonely people would be eligible. Children of any age would be eligible with the consent of their parents. In the words of Minto-Beddoes, this constitutes "the maximum respect for individual liberty".

The Economist has a reputation for asking hard questions and for informed commentary based on deep background research. So it is astonishing how readily it has accepted the paternalistic reassurances of doctors in Belgium that its systems function well. It glosses over the issue of "bracket creep" in eligibility for euthanasia and the increasing number of non-voluntary deaths and the substantial proportion which are never reported to the authorities. In mentioning "terminal sedation", it fails to point out that the patient dies of starvation and thirst. It brushes asides fears of disabled people that they will be pressured to die. 

The fifth-wealthiest person in the world, former Oracle CEO Larry Ellison, once remarked, “I used to think. Now, I just read The Economist.” No doubt that was said tongue in cheek, but there is some truth in it. For opponents of euthanasia and assisted suicide, The Economist's campaign sends an ominous message. As intellectual wetnurse to the global elite, it will help to set the agenda on end-of-life issues around the world. 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
27
 

‘I can see what you’re saying’

Researchers in Germany and the US have managed to interpret the brain activity of epilepsy patients, to the extent that they can reconstruct utterances of words and full sentences.

The fascinating findings were outlined in a recent study published in the journal Frontiers of Neuroscience.

Seven US epilepsy patients voluntarily participated in the study, reading aloud sample texts while an electrode array was attached to their cortices, the outer layer of the brain, which had been exposed for epilepsy surgery.

Scientists were able to observe how the brain planned speech acts and then activated the muscles of the speech organs via the neurones in the cortex, a split second before the speech itself became audible.

The patients were given set texts, such as a speech by former US president John F. Kennedy, so the researchers would know which sounds were being uttered and when. They set up databases containing prototypes of around 50 different speech sounds.

Using algorithms from automatic speech recognition, it then became possible to understand what was being said purely from the brainwaves.

“We demonstrated the first passive hybrid Brain Computer Interface for the detection and discrimination of perceptual activity”, the researchers concluded in their study.

The study, though very limited in its scope, is of relevance to the field of to neuroethics. Neuroethics, as Nita Farahany stated in a recent interview with BioEdge, addresses questions about ‘mental privacy’ and, literally, ‘freedom of thought’:

“Some of the forward-looking questions that we should be deliberating about now are whether individuals have a legal interest to mental privacy that could safeguard against compelled to submit to EEG, fMRI, or other brain-based interrogations? What role could or should neuroscience play in helping to validate eyewitness memory? Should we as a society protect freedom of thought? Does neuroscience challenge any of our existing norms upon which legal and constitutional doctrines are built? As scientific research in neuroscience proceeds, we as a society should deliberate about these issues to ensure that the ethical and societal implications of neuroscience are considered alongside scientific developments”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
27
 

French senators reject ‘deep sleep’ bill

The French senate has rejected a bill that would legalise ‘deep sedation’ – known as passive euthanasia by critics – of patients with a terminal and incurable illness. 

The bill, passed by a significant majority in the legislative assembly in March, would allow doctors to put patients into an irreversible comatose state and withdraw life-sustaining treatment. The bill goes even further, stipulating that doctors would be obliged to follow end-of-life instructions from patients regarding terminal sedation and stopping treatments if they agree the practices wouldn't improve their condition. 

Unlike the lower house, the senate was overwhelmingly against the bill, voting it down 196-87.

Les Républicains (LR) senators attempted to attenuate the bill (removing the clause “continue until death”) and have it passed, but a majority of left and centrist senators rejected the altered bill.  

It will now return to the legislative assembly for a second reading. Minister of Social Affairs and Health Marisol Touraine said she is hopeful the lower house can draft a more palatable revised bill for the senate. 

“The Senate’s overwhelming rejection is good news for ethical medicine–at least for now”, wrote bioethicist Wesley Smith



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
27
 

IVF woes #2: older women

A new study of declining IVF success rates has confirmed the results of previous studies indicating a sharp drop in live births for women in their early 40s. 

The 12-year study, led by Dr Marta Devesa at the Hospital Universitari Quirón-Dexeus in Barcelona, Spain, indicated that the chances of women having a baby through IVF was only 1.3% in those aged 44 and above, but 24% in those aged 38 to 39.

Perhaps more significant, the study found that in a two-year period between 41-43, success rates halved. Among 40 to 41-year-olds the IVF success rate was 15.6%, a number that dropped to 6.6% in those aged 42 and 43.

The results from the large study involving 4,195 women and 5,841 IVF cycles are were presented at the annual meeting of the European Society of Human Reproduction and Embryology (ESHRE).

Reflecting on the results, Dr. Devesa remarked: “women of 44 or older should be fully informed about their real chances of a live birth.”

Professor Adam Balen from the British Fertility Society says the study points to a broader sociological problem:

“It is clear that fertility declines with age as demonstrated in this study of pregnancy rates after IVF treatment. This is not new but a clear message from this and other related studies is that women may not be fully aware of the dramatic decline in their fertility in their mid to late thirties and so we need to better inform our young women about their potential fertility and enable them to both establish their career and have a family… We should put the family back into family planning and support young mothers with their careers at the same time.” 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
27
 

IVF woes #1: Australia

As couples enter pristine Australian IVF clinics with their smiling staff and photos of bright-as-a-button babies, they are usually unaware of the harsh reality of IVF success rates. The statistics are worse than most would think.

Writing in The Conversation this week, lawyer and bioethicist Loretta Houlahan criticised the suppression of clinic success rates by the Australia and New Zealand Assisted Reproduction Database (ANZARD). Each year ANZARD, an initiative of the National Perinatal Epidemiology and Statistics Unit and the Fertility Society of Australia (FSA), releases generalised figures of success rates in clinics. But individual clinics are not named, leaving would-be-parents in the dark about standards at an individual clinic. This is problematic, considering that individual clinic success rates vary wildly (from 4.0% to 30.9% according to the 2012 ANZARD report.

The current system perpetuates a lack of accountability, Houlahan remarks:

“Year after year, the poor performance of Australia’s worst IVF clinics fails to be explained. Yet these figures raise serious concerns about the practices of the clinics responsible. The issue is there is no obvious plausible scientific explanation for IVF success rates in the single digits. On their own, without clarification, these sorts of figures are simply outrageous and unacceptable.”

Incidentally, the growth of Virtus Health, Australia’s largest IVF provider, has slowed dramatically. Analysts attribute this to both fierce competition in the Australian IVF market and flat growth in IVF demand. At the start of this month the company dramatically revised it net-profit growth forecasts for 2014-2015. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
20
 

Only connect: the Pope’s global bioethics

The publication of a document by Pope Francis on the environment on Thursday has created a media storm. Laudato Si’ (Be praised, in Italian) is an encyclical, the most authoritative form of Vatican instruction, and is addressed not just to Catholics but to “every person living on this planet”.

Francis hopes that it will influence a Paris summit on climate change at the end of the year. Given his immense popularity and moral prestige, some pundits believe that his contribution could be a game-changer.

In a sense, Laudato Si’ is also an extended meditation on bioethics. Ever since the birth of the discipline in the 1960s, there has been a tension between freedom bioethics with a focus on autonomy and the limits of human intervention on the body and global bioethics, which integrates human activity into ecology. Francis clearly favours the latter approach. The phrase “Everything is connected” is a constant refrain in the document.

So from his perspective, opposition to embryonic stem cell research and opposition to the destruction of the Amazon rain forest are related; preservation of the natural order is paramount. “The natural environment has been gravely damaged by our irresponsible behaviour,” he writes. “The social environment has also suffered damage. Both are ultimately due to the same evil: the notion that there are no indisputable truths to guide our lives, and hence human freedom is limitless.”

Unsurprisingly, then, he rejects the view that man is defined by dominating and transforming nature. There is a natural order in the environment and in human life which must be respected. Technology, he says, “proves incapable of seeing the mysterious network of relations between things and so sometimes solves one problem only to create others.” “This is a point which he uses to attack abortion:

“Since everything is interrelated, concern for the protection of nature is also incompatible with the justification of abortion. How can we genuinely teach the importance of concern for other vulnerable beings, however troublesome or inconvenient they may be, if we fail to protect a human embryo, even when its presence is uncomfortable and creates difficulties?”

Far from being a Marxist rant, as some US conservatives have alleged, the Pope is deeply theological – as if one would expect anything else. “Here we can add yet another argument for rejecting every tyrannical and irresponsible domination of human beings over other creatures. The ultimate purpose of other creatures is not to be found in us. Rather, all creatures are moving forward with us and through us towards a common point of arrival, which is God.”

Rather than “bioethics”, Francis calls his approach “an ecology of man” which established limits on the exercise of human freedom.  And this is what underlies his hostility towards gender theory: “

The acceptance of our bodies as God’s gift is vital for welcoming and accepting the entire world as a gift from the Father and our common home, whereas thinking that we enjoy absolute power over our own bodies turns, often subtly, into thinking that we enjoy absolute power over creation. Learning to accept our body, to care for it and to respect its fullest meaning, is an essential element of any genuine human ecology. Also, valuing one’s own body in its femininity or masculinity is necessary if I am going to be able to recognize myself in an encounter with someone who is different. In this way we can joyfully accept the specific gifts of another man or woman, the work of God the Creator, and find mutual enrichment. It is not a healthy attitude which would seek “to cancel out sexual difference because it no longer knows how to confront it”

Benedict XVI, despite his reputation as a hard-line conservative, saw that he had much in common with Greens, more perhaps than with many political conservatives. They respected the natural order, even if they did not respect God. Francis seems to be following in B16’s footsteps. 



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June
20
 

What should we do with frozen embryos?

As the number of unused frozen embryos in the US burgeons, policy analysts are questioning how authorities should deal with the hundreds of thousands that have been abandoned or have a disputed legal status.  

Even the New York Times have jumped on the issue, publishing a front-page story on the uncertain fate of frozen embryos in America.   

“…In storage facilities across the nation, hundreds of thousands of frozen embryos — perhaps a million — are preserved in silver tanks of liquid nitrogen. Some are in storage for cancer patients trying to preserve their chance to have a family after chemotherapy destroys their fertility. But most are leftovers from the booming assisted reproduction industry, belonging to couples like the Wattses [a couple that used IVF], who could not conceive naturally…”

The article discusses cases like that of Nick Loeb and his ex-fiance Sofia Vergara, currently in a bitter legal dispute over frozen embryos they created.

“Some cases have landed in court, where there is little guidance or precedent for judges struggling with this new territory, and so far, little consistency in their rulings…”

This appears to be one of the predominating concerns about IVF in the US – a lack of regulation in legal jurisdictions across the country.

In a blog post on the Times lead article, author KJ Dell’Antonia cautioned against a tendency to ‘ignore’ embryos that haven’t been needed by parents.

“When it comes to unused embryos, loving and supporting those who become children is the easy part, and the happy personal stories almost a distraction from the harder questions about the embryos that are not donated, are abandoned or become the subject of litigation, as well as decisions about how embryos can be created or change hands. Even the language surrounding those questions is difficult, and the choice of noun or pronoun in describing an embryo speaks volumes.”


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
20
 

Sperm from ovaries

This one’s a little technical, but may very well have significant implications for scientist’s ability to influence sex determination in mammals.

Japanese researchers have discovered a way to influence the sexual fate of germ cells in medaka (rice fish).

The Scientist reports:

“Somatic cells in the gonads of a developing vertebrate provide germ cells with cues, such as hormones, to develop into sperm or eggs. Studying the ways these cues affect a germ cell’s commitment to become sperm or eggs, Toshiya Nishimura from the laboratory of Minoru Tanaka at the National Institute for Basic Biology in Okazaki, Japan, and colleagues uncovered a single gene that, when missing from female embryos of the Japanese rice fish, or medaka (Oryzias latipes), leads the fish to produce functional sperm soon after hatching.”

According to the researchers, the gene foxl3, is the sole determinant in the sexual fate of the rice fish. Foxl3 appears to allow female germ cells to react to environmental signals while the mutant is shielded from these gonadal somatic cell cues. 

Researchers disrupted the foxl3 gene in some of the female specimens, and in these fish sperm began to generate in the ovaries. 

It’s unclear whether the results in medaka will have any impact on the study of sex determination in mammals, said Allan Spradling, a developmental biologist at the Carnegie Institution for Science in Baltimore, Maryland.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
20
 

Peter Singer ‘disinvited’ from German philosophy festival

Peter Singer is in hot water in Germany again over his controversial views.

The Australian utilitarian philosopher began his royal progress through Europe well. In late May he added another two honorary doctorates -- from the Universities of Athens and of Bucharest -- to his extensive collection of awards and distinctions. From there he went to Berlin to receive the inaugural “Peter Singer Prize for Strategies to Reduce the Suffering of Animals”. He was introduced in glowing terms by Maneka Gandhi, Indian Minister of Women and Child Development, who is president of People for Animals in her own country. A German politician explained why he was so popular: “Peter Singer's ideas are logical, free from religion and easy to understand”.

However, these encomiums were lost on a gathering outside where about 250 people had assembled to protest the invitation. Their message was that Singer believes in killing babies.

The protest may have unnerved the organisers of an eight-day (only in Germany!) philosophy festival in Cologne called phil.Cologne. Singer’s invitation to speak on May 31 was cancelled -- a bit odd, considering that he had been described in the conference programme as “one of the world’s most influential philosophers”. "How can you call yourself a philosophy festival, if you are too afraid to discuss issues that bother some people?" an exasperated Singer told the Kölner Stadt-Anzeiger afterwards. "Hasn’t that always been the role of philosophers since the days of Socrates?"

What happened?

While the organisers were aware of Singer’s stark views on infanticide and euthanasia, they must have hoped that the public would focus on his role as the foremost theorist of animal liberation. The title of his session was to have been “Will vegans save the world?”

Unfortunately, on May 26 a Swiss newspaper published an interview with Singer in which, under aggressive questioning, he expressed his views with characteristic frankness. Whatever else may be said about Peter Singer, he is no equivocating trimmer. Here are some selections. (Thanks to a reader of the Leiter Reports blog for the translation.)

Neue Zuricher Zeitung: You do not consider an infant to be more worthy of protection than an embryo. On the other hand, you do not necessarily ascribe a higher status to humans than to animals.

Peter Singer: Belonging to the human species is not what makes it morally wrong to kill a living being. Why should all members of the species homo sapiens have a right to life, whereas other species do not? This idea is merely a remnant of our religious legacy. For centuries, we have been told that man was created in the image of God, that God granted us dominion over the animals and that we have an immortal soul.

NZZ: If you were standing in front of a burning house with 200 pigs and one child inside, and you could choose to save either the animals or the child, what would you do?

PS: At a certain point, the animals' suffering becomes so great that one should choose to save the animals over the child. Whether this point occurs at 200 or two million animals, I don't know. But one cannot let an infinite number of animals burn to save the life of one child…

NZZ: How about yourself: are you useful enough?

PS: Considering the influence I've had, my choice of profession is justified. I have motivated people to think about reducing animal suffering and helping people who live in extreme poverty…

NZZ: Would you go as far as to torture a baby if this were to bring about permanent happiness for the whole of mankind?

PS: This question is from Dostoevsky's "The brothers Karamazov"; Ivan poses it to his brother Alyosha. I may not be capable of doing it, as it is in my evolutionarily developed nature to protect children from harm. But it would be the right thing to do. Because if I didn't, thousands of children would be tortured in the future.

This is not the first time that Singer has been “disinvited” in Germany. Back in 1989, 1990 and 1991 engagements in Germany, Switzerland and Austria were cancelled after vehement protests from disability groups. 



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June
20
 

Nepalese surrogacy unearthed

The devastating earthquake in Nepal last April unearthed many harsh realities of life in the poverty stricken country – including the alleged exploitation of young Indian migrants by surrogacy agents in Kathmandu.

After the 2013 Indian government ban on the use of local surrogates by non-married, gay or single parents, surrogacy agents have turned to Nepal where the procedure is less regulated.

While Nepalese locals tend not to act as surrogates, there is no official government ban and scores of migrant women rent their wombs in cities like Kathmandu.

Surrogacy agencies in Nepal lure clients on the Internet with rates that are about a fourth of the prices in the United States. The packages cost between $35,000 and $65,000. The mothers earn between $5,000 and $6,000 of that, the price of a house in that part of Asia. The rest goes into the pockets of doctors and agencies.
SE Asia surrogacy activist group Surrogacy Laws India has expressed concern about the treatment of the women, who are effectively detained in local hotels for the duration of their pregnancy. Surrogacy agents want to avoid criticism from the socially conservative Nepalese community, who are largely ignorant of the science behind IVF and see pregnancy out of wedlock as taboo.

Despite the questionable treatment of surrogates, Nepalese businessmen are excited about the growing surrogacy trade.

"Surrogate mothers can help develop our medical tourism," said Roop Jyoti, the owner of a new surrogacy clinic at Kathmandu’s Grande hospital. "It's good for our economy and our health care system. Agencies have brought us a know-how that it would have taken us years to acquire. Now it's up to the government to decide whether they want surrogate motherhood to develop."



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
20
 

The Rachel Dolezal controversy

In the past two weeks the US media has been in a frenzy over allegations that civil rights activist Rachel Dolezal is really ‘white’. Dolezal has gone on the defensive, claiming that she identifies as ‘black’ – but these claims have in turn been met with criticism from all quarters of American society.

So what does this debate really hinge on? In an Op-Ed in the Washington Post,  Pulitzer-prize winning report Amy Ellis Nutt claims that cultural identity has a strong biological substrate in different areas of the brain. This somehow should inform the way we view the Dolezal controversy.

“Individuals contain different selves, often contradictory selves, according to neuroscientists. There is no clump of grey matter or nexus of electrical activity in the brain that we can point to and say, “this is me, this is where my self is located.” Instead, we are spread out over our brain, with different areas of cortex controlling different aspects of who we are, from what we see and hear to how we think and feel.”

Ellis Nutt quotes Carolyn Yoon, a cognitive psychologist at the University of Michigan’s Institute for Social Research. Yoon says she doesn’t “see what the big controversy is” regarding Dolezal’s claim to identify as a black person.

“Identity is highly malleable and is a function of what she comes in contact with, what she spends her time doing, is interested in and motivated by. Over time that will change your brain.”

Another Washington Post journalist, Jonathan Capehart, had no time for Dolezal’s antics:

“A white person identifying strongly with African Americans and African American culture is not a problem at all. The more the merrier in understanding who we are and our place in this nation’s history. A white person running a chapter of the NAACP is not a problem, either. That’s someone so down with the cause that they are putting their time, energy and clout into public activism on behalf of fellow Americans. But a white person pretending to be black and running a chapter of the NAACP is a big problem…

Blackface remains highly racist, no matter how down with the cause a white person is…”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
20
 

Where is Belgian euthanasia headed, asks The New Yorker

The long-drawn-out case of a woman who asked for euthanasia in 2012 may eventually reach a criminal court in Belgium. The European Court of Human Rights wants a Belgian court to hear allegations that there were serious irregularities in the euthanasis of Godelieva De Troyer by  Dr Wim Distelmans.

Ms De Troyer’s son, Tom Mortier, a university lecturer, claims that her own doctor denied his mother’s request for euthanasia because she was depressed. However, Dr Distelmans, who had no psychiatric expertise, readily agreed. Ms De Troyer made a 2,500 Euro donation to Dr Distelman’s Life End Information Forum, which suggests that there may have been a conflict of interest.

Ms De Troyer’s death was just one of 1,432 registered euthanasia deaths in Belgium in 2012. But a careful examination of the details of the case in America's foremost literary magazine, The New Yorker, this week raises serious doubts about the wisdom of legalising assisted suicide and euthanasia in the United States and elsewhere. It is essential reading for anyone interested in end-of-life issues.

“In the past five years, the number of euthanasia and assisted-suicide deaths in the Netherlands has doubled, and in Belgium it has increased by more than a hundred and fifty per cent. Although most of the Belgian patients had cancer, people have also been euthanized because they had autism, anorexia, borderline personality disorder, chronic-fatigue syndrome, partial paralysis, blindness coupled with deafness, and manic depression.”

Astonishingly, at least to people in an Anglophone tradition, Dr Distelmans is both Belgium’s leading practitioner  of euthanasia and the chairman of the board which regulates it and oversees its ever-expanding boundaries. Patients can request euthanasia simply because they are tired of living. Dr Distelmans told The New Yorker.

 “We at the commission are confronted more and more with patients who are tired of dealing with a sum of small ailments—they are what we call ‘tired of life.’ ” Although their suffering derives from social concerns as well as from medical ones, Distelmans said that he still considers their pain to be incurable. “If you ask for euthanasia because you are alone, and you are alone because you don’t have family to take care of you, we cannot create family,” he said.

Although most coverage of Belgium’s euthanasia culture in the media has focused on bizarre incidents like euthanasia for person who was unhappy with a sex-change operation, The New Yorker investigates its spiritual and philosophical roots. One psychiatrist attributes it to a kind of nihilism:

[Dirk De Wachter, a professor of psychiatry at the University of Leuven] believes that the country’s approach to suicide reflects a crisis of nihilism created by the rapid secularization of Flemish culture in the past thirty years. Euthanasia became a humanist solution to a humanist dilemma. “What is life worth when there is no God?” he said. “What is life worth when I am not successful?” He said that he has repeatedly been confronted by patients who tell him, “I am an autonomous decision-maker. I can decide how long I live. When I think my life is not worth living anymore, I must decide.” He recently approved the euthanasia of a twenty-five-year-old woman with borderline personality disorder who did not “suffer from depression in the psychiatric sense of the word,” he said. “It was more existential; it was impossible for her to have a goal in this life.” He said that her parents “came to my office, got on their knees, and begged me, ‘Please, help our daughter to die.’ ”

Inside the euthanasia culture, The New Yorker suggests, most Belgians are puzzled by complaints and criticism. The system is functioning well and has public support. What’s the big deal? But to an outsider, the country where people desperately want to die seems weirder by the day. 



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June
20
 

Repeat clients prefer same sperm donors

Despite a prevalence of anonymous sperm donation in European countries, the use of the same sperm donor for subsequent conceptions is of paramount importance to those couples needing sperm donation to have children.

According to research presented at the annual meeting of the European Society of Human Reproduction and Embryology in Lisbon this month, couples are far from indifferent about genetic links. They  felt that the genetic link between children encouraged better sibling relations, and that visible and other resemblances between the children would reinforce family ties.

The investigators acknowledged the paradox of their findings - that, while sperm (and egg) donation necessarily imply the genetic detachment of the child from one of its parents, couples themselves seem determined to do as much as possible to ensure genetic bonds between their children.

"Donor offspring are increasingly seeking their genetic half siblings through online registries," said Ms Somers. "It's relatively uncharted territory, but it's clear that a genetic link among donor-conceived children is important for aspiring parents." According to findings from this study, full siblings were described by the parents as having "real" and "unambiguous" kin connections.

Some couples talked about their need to use a new sperm donor if the one they had used for their first child was no longer available. This was described for instance as "a problem". When this situation became reality for one couple, they were really "disappointed" and blamed the hospital for "making the mistake of not informing them about the limited 'stock' of sperm".



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June
13
 

Dutch man cleared after helping mother commit suicide

The Arnhem Court of Appeal has cleared a 74-year-old Dutch man who helped his mother commit suicide, despite strict prohibitions on assisted suicide in federal leglislation. The man, Albert Heringa, admitted in 2010 documentary that he had helped his 99-year-old ailing mother Moek to overdose on medication. Dutch law allows euthanasia if carried out in strict conditions by a physician, but assisted suicide by a friend or relative of the person who wants to die remains illegal.

Heringa was brought before a court in 2013 and found guilty of assisting in his mother’s death; the court of appeal rejected this decision.

In a written verdict, the appeals court said Heringa had to decide between obeying the law against assisting suicide and his “unwritten moral duty” to help his mother achieve her wish for “a painless, peaceful and dignified death.”

Heringa "could not lean back and do nothing, while watching her suffer," the verdict said. "This would have caused him life-long feelings of guilt."

Heringa’s mother was suffering from a variety of physical and psychological ailments. The prosecution did not try to question Heringa’s motives, but was simply calling on the court to uphold the legal prohibition on assisted suicide in the country.

Assisted dying advocates see the ruling as very promising. "This is a step in the direction we want to go," said Fiona Zonneveld of the Dutch Association for Voluntary Euthanasia. "Many people who consider their lives completed want to be helped by their loved ones. We think that should be allowed."

 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
13
 

Baby born from ovary frozen in mother’s childhood

A Belgian woman has given birth using transplanted ovarian tissue that she had removed when she was a child.

The 29-year-old woman, who wishes to remain anonymous, suffered from severe sickle cell aenemia since a young age, and had to undergo strong chemotherapy. Doctors chose to remove her right ovary and surrounding ovary tissue before it was damaged by the chemotherapy; her remaining ovary failed following the treatment, meaning that she was extremely unlikely to conceive without a transplant.

As an adult, the woman asked doctors to restore the frozen ovary. The patient started menstruating spontaneously five months later, and became pregnant naturally at the age of 27. She gave birth to a healthy baby boy in November last year.

The gynaecologist who led the treatment to restore the patient's fertility, Dr Isabelle Demeestere, told the BBC the patient was very stressed during the procedure because it was her only option to have a child, but that now she "is of course very happy and is enjoying her new life".

The treatment could potentially allow many other young women with similar ovarian damage to conceive. Doctors did however note that the procedure itself carries risks such as damaging the removed healthy ovary or reintroducing malignant cells at the time of transplant.

About 40 babies have already been born across the world using frozen ovarian tissue taken from older women.

There are, however, many ethicists who have offered a note of caution about the enthusiasm surrounding ovarian tissue transplantation. In a recent article in The Journal of Reproductive Biomedicine Online, Art L. Caplan and Pasquale Patrizio cautioned about the use of ovarian transplants as a treatment for menopause. In another article discussing the ethics of ovarian transplants, Catholic bioethicist Reneé Mirkes argues that it is difficult to justify the procedure using a personalist and teleological ethical paradigm. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
13
 

New Down syndrome test could be more “efficient”

UK researchers are hailing the development of a "safer" and more "cost-effective" test for Down syndrome. The newly developed procedure, which involves screening the blood of a mother for foetal DNA, is a far less invasive alternative to the current procedure (amniocentesis) used to detect Down’s syndrome.

The new method was recently trialled on 2500 expectant mothers at Grand Ormond Street Hospital in London, and researchers say it is both less risky and cheaper.  

The current method, amniocentesis, involves the sampling of amniotic fluid obtained through the insertion of a hollow needle into a mother’s uterus. This procedure significantly increases the chance of a miscarriage, aside from being quite frightening and often painful for pregnant women.

The new procedure involves one simple blood test. "Instead of taking an invasive sample, we can take a sample of the mother's blood, and we can look at the levels of DNA in mum's blood and, if there's a little bit more chromosome 21 than we expect, that will be an indication that he baby has Down's syndrome”, explained Lucy Jenkins, director of Genetics at Great Ormand Street Hospital.

The test does not, however, totally eliminate the need for amniocentesis. Mothers who ‘test positive’ on the blood test still need to undergo amniocentesis for confirmation.

"We have approached women to be involved in this study who maybe have a more moderate risk associated with Down's syndrome, so there are women having access to the test who wouldn't previously have had," Dr. Jenkins said.

"Also, women who would never consider having an invasive test, maybe would access this test because it's less invasive."

Disability rights groups are concerned that the new test will increase the number of disabled children being aborted.

But experts claim this will not necessarily happen. “It may offer parents more choices, but I don't think all of those parents are necessarily going to choose to terminate the pregnancy”, said UCL Professor and trial co-ordinator Lyn Chitty. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
13
 

Planning for a world with LGBT bioethics

With same-sex marriage and the transformation of Bruce Jenner into Caitlyn Jenner in the world headlines, it’s time to ask what LGBT bioethics would look like. Timothy Murphy, of the University of Illinois College of Medicine,  foreshadows some of the major themes in the journal Bioethics.

Bioethics benefits. “Bioethics is better than it would otherwise have been, because people queer in their sexual interests and identities have challenged misconceived concepts of health and disease, challenged obstacles to access and equity in healthcare, and forced attention to professional standards in clinical care, among other things.”

Defending LGBT parenting. To show that the battle is not completely over, Murphy cites Oxford philosopher John Finnis’s implacable opposition to adoption by male and female homosexuals as “intrinsically evil”. Putting “skepticism about LGBT people as fit parents fully behind it” will be one of the first tasks of fully developed LGBT bioethics.

Promoting new reproductive technologies. In the not-too-distant future it may be possible to use stem cell technology to create synthetic gametes for gay and lesbian couples. This will allow them to raise their own genetic children. “This option would go a long way in helping transgender people express and consolidate their gender identity,” writes Murphy. Another development could be “male pregnancies”. Now that it is possible to transplant a uterus, why couldn’t males bear children?

Paying for them. Shouldn’t insurers and the government pay for these very expensive technologies, if they already cover costs for heterosexual couples? “We need to begin asking these LGBT-centric questions.”

Clarifying the scope of conscience exemptions. Denying legitimate medical services to LGBT patients should not be protected by the law. “If clinicians may turn patients away because of their perceived sinfulness or immorality, it would be difficult to set any limit on the exercise of that right … If we go that way, healthcare would be a moral bazaar, undercutting its overall value by reducing its efficiency.”

Achieving status equality. “A strong presumption in theory that LGBT people are the equals of everyone else is one very good starting point for working toward the achievement of that exactly that equality in practice.”

This particular article only hints at the panorama of changes and challenges for LGBT bioethics. But there could be many others, some quite unexpected. For instance, in a previous article in Bioethics, Murphy argues in favour of sex selection of infants. While one objection to this is the possible distortion of the sex ratio, Murphy points out that from an LGBT perspective “Complications about who qualifies as ‘male’ and ‘female’ complicate judgments about the ratio”. He concludes that “The natural sex ratio cannot be a sound moral basis for prohibiting parents from selecting the sex of their children.”



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June
13
 

European court allows “vegetative” patient to be starved to death

Doctors have been given permission to remove food and water from Vincent Lambert, a severely brain-damaged, 38-year-old Frenchman. After a long legal battle, the European Court of Human Rights ruled last week that  ending artificial nutrition and hydration did not violate Article 2 of the European Convention on Human Rights, which guarantees the right to life.

Like the Terri Schiavo case, the fate of Mr Lambert, who was injured in a car accident seven years ago, has pitted his parents against his wife. In this case, his wife Rachel says that he would not want to be kept alive in a vegetative state. She is supported by six of his siblings. His parents, however, deny that he is in a vegetative state and are supported by two of Lambert’s sisters and a half-brother, have vowed to fight on to keep him alive. They claim that he is responsive.

This week the controversy erupted again when a supporter of the parents released a video which purported to show Vincent responding to his mother’s voice. Doctors were outraged. His former doctor said that this proved nothing. "These patients in a vegetative state react to their environments but it is a vegetative response," he said. "This video is an attack on his dignity and his right to privacy - it's manipulative and plays on people's emotions."

In 2013 a lower court allowed doctors to discontinue treatment. Lambert lasted 31 days without food and very little water before a judge ruled that this breached his right to life. The present judgement overturns this ruling. Euthanasia is currently illegal in France, but the court reasoned that withdrawing “life-sustaining treatment” was not directly causing his death and that therefore this could not be regarded as euthanasia.

Twelve of the judges in the ECHR voted to allow Lambert to be starved to death. However, there were five who strongly dissented. They pointed out that he is not brain-dead, can breath on his own without a life-support machine, can digest food, is not in pain and is not in a terminal situation. “What is the overriding reason, in the circumstances of the present case, justifying the State in not intervening to protect life?... Is it because the person is of no further use or importance to society, indeed is no longer a person and has only ‘biological life’?” They concluded:

“In 2010, to mark its 50th anniversary, the Court accepted the title of The Conscience of Europe when publishing a book with that very title … We regret that the Court has, with this judgment, forfeited the above-mentioned title.”

According to the European Centre for Law and Justice, tens of thousands of other patients in Europe are in the same situation as Mr Lambert. It says that this decision puts their lives at risk. 



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June
13
 

Germanwings pilot had seen 41 doctors in 5 years

Further revelations about the co-pilot of the Germanwings crash in which 150 people died have raised questions about medical confidentiality. A prosecutor in Paris said this week that Andreas Lubitz had seen 41 doctors in five years. Further investigations have uncovered the fact that he suffered from psychosis and was terrified of losing his sight.

In a letter to a doctor written on March 10, for instance, Lubitz said he was sleeping only two hours a night even though he was taking a double dose of antidepressants. “He consulted private doctors and these doctors were clearly aware of his health problems, which were both psychological and psychiatric,” said the French official. However, due to strict medical privacy rules, the doctors could not pass this information to the pilot’s employers. The Wall Street Journal says:

“The French probe goes to the heart of a broader discussion over whether stringent privacy laws in Germany and other parts of Europe should be relaxed when it comes to aviation safety. Laws aimed at protecting privacy and doctor-patient privilege allowed Mr Lubitz to conceal his condition from Germanwings, the budget airline of Deutsche Lufthansa , and ignore at least one doctor’s opinion that he shouldn’t have flown the day of the crash.”



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June
13
 

Looking back: Daniel Callahan

The dominant view of bioethics frames issues in terms of autonomy and individual rights. A retrospective in the Cambridge Quarterly of Heathcare Ethics, by Daniel Callahan, one of the grand old men of American bioethics, is a reminder of a broader and more communitarian view of the discipline.

Callahan is a restless thinker who did his undergraduate study at Yale and his PhD at Harvard. But the academic life did not suit him and he turned to journalism and for several years edited Commonweal, an influential Catholic journal. After splitting with the Church over abortion, in 1969 he co-founded The Hastings Center, a leading bioethics think tank.

Here are a few paragraphs:

I became known as an autonomy-basher, not because I objected to autonomy as an important human value but because I objected to an undercurrent trend that seemed to reduce ethics itself to nothing but individual free choice disconnected from an even more important question: what counts as a good or bad choice, a good or bad person, or a good or bad society? Those questions seem to make Tea Party–like autonomy zealots acutely uncomfortable …

I wanted to directly challenge what I take to be the present “reigning goals” of medicine, its de facto working agenda: (1) that death is an inherent evil to be pursued relentlessly and without limits—and by this I mean the search for cures for lethal disease, not end-of-life care when a cure is no longer possible (an important distinction); (2) that the royal road to curing disease is medical research and technological innovation; (3) that meeting healthcare needs trumps other societal needs when they clash; (4) that the notion of limits to progress and innovations is heretical, a threat to all the values bequeathed to us by the Enlightenment; (5) that nature is to be dominated and manipulated to human ends; and (6) that it is individual good and autonomy that takes priority over the common good …

My latest book project, and probably my last ambitious one, is a comparative study of five global crises (so labeled by the World Health Organization): global warming, food shortages, water quality and shortages, obesity, and chronic illness. I call them the five horsemen, and I chose them for their unique common feature: after some 30–40 years of international government and private efforts and research, and after the spending of billions of dollars, they are all getting steadily worse, with little progress of any serious kind being made. Perhaps there is a certain masochism (or maybe hubris) in going after such a difficult and often depressing topic, but there was another reason for my choice as well: in every case there is agreement that dealing with the problem requires massive changes in deeply embedded cultures, behavior, and ways of life. It is our industrial societies that have given us prosperity but also global warming, our extended life spans that have brought with them huge increases in chronic illness, and the improvements in our diets that, ironically, have brought about the cheaper food that also gives us obesity, which is on the rise in poor countries (where citizens can now afford meat). How do we change the ways of life that turn the initially good into the bad?

Is that a bioethics problem? Not quite, by the usual notions of what bioethics is all about. But if bioethics is what people in bioethics do, and I am in bioethics, then why not? Some of us who started the field can perhaps introduce some new possible directions. The fact that I am utterly over my head, with no background at all in the case of three of my five horsemen, is part of the charm for those of us who seek variety and adventure.



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June
13
 

A “mercy killing” outside the law

One issue that seldom surfaces in discussions about the legalization of assisted suicide and euthanasia is the message it may send to unbalanced people. A snapshot of what could happen is the death in February of 81-year-old David Paterson, who was dying of cancer in a nursing home in Yorkshire, in the UK. Mr Paterson was a regular church-goer and a firm opponent of euthanasia. However, in his last days, he became emaciated and weak, although his pain was controlled with morphine.

A fellow parishioner with alcohol problems, 54-year-old Heather Davidson, befriended the widower and became very concerned about his health. One day she rang a cancer support organisation to ask whether smothering her new friend would make her a murderer. “If he was a dog he would have been put down months ago,” she said. Although she was clearly told that it would be murder, Ms Davidson took matters into her own hands and smothered Mr Paterson. She regarded this as a “mercy killing”.

Ms Davidson, it turns out, knew a thing or two about dogs, as she had a previous conviction for attempting to smother her neighbour’s pet. She was sentenced to life imprisonment after pleading guilty to Mr Paterson’s murder. “You were only were saving him a few hours of suffering. In so doing you deprived him of what he wanted most, a natural death. This private man did not in death have a private ending,” the judge said. 



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June
13
 

German parliament to debate assisted suicide

Two bills authorising assisted suicide have been presented to the German Parliament ahead of a debate in July. One of them bans assistance for a fee, which is legal in Switzerland, Belgium and the Netherlands; the other would grant the right to die to any competent adult who has been counselled by a doctor. In Germany it is currently illegal for a doctor to prescribe and administer a lethal medication. According to Deutsche Welle, the Bundestag hopes to pass new legislation on assisted suicide by November this year. 



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June
06
 

Surrogacy law a child of our times

A British lawyer has slammed Britain’s “inhumane surrogacy laws”, following a decision in the High Court to take a one-year-old girl from her surrogate mother and give her to her gay parents.

The case in question involved a 43-year-old Romanian woman who two years ago struck a deal with a male gay couple. The woman conceived via IVF using sperm from one of the men, only to decide during the pregnancy that she wanted to keep the child. Following the birth the case escalated to the courts, and ended just last month with a judge of the high court ordering the woman to hand over the child to the gay father.

Well-known British solicitor and legal analyst Jon Holbrook says that “something is seriously wrong with the moral compass of our policymakers.”

Holbrook argues that bearing a baby in utero is a morally significant fact that courts should take into account. It is a gross injustice, he argues, to ignore the intense psychological and emotional bond that arises from childbearing:

“The fact that the mother has carried the baby for nine months and given birth to it gives her no right to resist a residence application from the commissioning father … The law on surrogacy now treats the birth mother as little more than a vessel – and that is inhumane…”

Holbrook sees the current state of the law as “the product of a discourse of misplaced equality and contractual rights that flattens the moral landscape”:

“The notion that a mother can have rights is anathema to today’s policymakers, who have been schooled in the discourse of equality, as now ratified in the Equality Act, to reject instinctively any form of differential treatment on the grounds of sex.”

He argues that we need to rethink the contractualism of surrogacy laws like those in Britain to take into account the emotional complexities of surrogacy. 

“Given that the mother had not caused her child any serious harm, shouldn’t the law have accepted the mother’s right to raise her child? Is it now the case that a surrogate mother faces the possibility of enduring emotional anguish unless she is wealthier, more articulate, more composed, more politically correct and more in touch with the latest views on parenting than the commissioning parents?”

Holbrook closes by arguing for a return to moral and philosophical approach to surrogacy, rather than a clinical and contractual legal approach. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
06
 

The bioethics of genetic diversity

The latest issue of the American Journal of Bioethics examines the topic of new reproductive technologies and genetic diversity. A series of articles discuss the ethical issues surrounding the protection of genetic variation in a population.

Monash bioethicist Robert Sparrow’s ‘Imposing Genetic Diversity’ – the target article for the discussion – considers the radical implications of arguments against the new eugenics that focus on the importance of diversity. 

Sparrow, though himself no friend of eugenic logic, questions whether arguments about the value of diversity could potentially have authoritarian implications. If we desire to conserve genetic variation and naturally occurring instances of disability in our world, then why shouldn’t we protect disability and – in extreme cases where disability begins to disappear – impose disability on populations.  

“Diversity clearly makes the world a more interesting place and the idea that we should conserve genetic diversity is therefore tempting. Yet when we imagine imposing genetic diversity to secure this same good, its value is revealed as elusive, especially if we concede that it must be achieved at the cost of the well-being of some individuals whose existence has been used to produce a benefit enjoyed mainly by others.”

In a response to Sparrow’s article, bioethicist and disabilities advocate Rosemarie Garland-Thompson argues that the very project of trying to design “the future people we want” (viz. the use of reproductive technologies to produce the best possible babies) is inherently problematic, as we do not have the power to predict all the contingencies of the future world. Hence we should neither impose disability nor attempt to eradicate it:

“All present actions shape the future, but we cannot predict or control all of the outcomes. History confirms the liabilities of this Promethean enterprise…Our shared present is filled with the unintended consequences of our predecessors’ design limitations. Our presents of nuclear disaster, global warming, endangered and invasive species, environmental degradation, toxic waste, ethnic cleansing, and “perfect” Aryans are the unanticipated consequences of past designs intended to make a better future”.

The journal issue also features a response from Oxford bioethicist Julian Savulescu, who defends his theory of procreative beneficence – viz. the supposed moral obligation of parents to have the healthiest children through all natural and artificial means available. Savulescu introduces a nuance into his theory, saying that it is not necessarily health that matters, but rather the prospective quality of life of a child (which involves not just health but also socio-cultural factors):

“When one makes procreative choices, one must predict not only the natural but also the social environment. Our nature as social animals ensures diversity in value of life. Whether this means that lives with deafness, blindness, or intellectual disability are likely to be among the best lives is a question I cannot address in this short commentary.” 


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
06
 

How can we combat science fraud?

A recent editorial in the New York Times raised the question of cheating in academia. This year alone there have been at least three major cases of academic fraud:

“the journal Environmental Science & Technology corrected a March paper on fracking because the lead scientist failed to disclose funding from an energy company. In May, The Journal of Clinical Investigation retracted a paper on cancer genetics from a young researcher at the National Cancer Institute because the data was fabricated.”

And a study in Science on attitudinal change and same-sex marriage was retracted last week due to serious problems with reproducibility.

The Times suggests that there is a need for greater scrutiny of papers being submitted to publications, particularly those submitted by young researchers:

“The scientific community clearly needs to build a better safety net… It can start by ensuring that scientists, especially peer reviewers, are allowed to see the underlying data of a paper, which researchers are typically reluctant to share.”

The editors also called for increased funding for independent regulatory bodies:

“The federal Office of Research Integrity should be given ample funds and sufficient independence to investigate all major cases that come to its attention. Another answer to the problem of fraudulent research, though, might be more research. The federal government could sponsor studies to determine how much cheating goes on, how much harm it causes and how best to combat it.”

The Times editorial quickly drew media attention. The conservative Power Line blog mocked it for oversimplification and for recommending “more money and more power for the federal government.” A Vox.com posting declared that “focusing solely on scientists’ cheating ways misses a bigger issue here. It’s not just bad apples themselves who are to blame. The scientific process itself has serious structural flaws.”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
05
 

California moves closer to passing assisted suicide bill

California Senate   

California is now one step closer to legalising assisted suicide after a bill passed in the State Senate by a vote of 23 to 14 on Thursday evening. SB-128 now moves to the State Assembly (the lower house). Governor Jerry Brown, who once trained as a Jesuit priest, has given no indication of how he will vote.

It is hard to tell what the outcome will be. Similar measures failed in 2005 and 2007. Opponents of the bill are determined to lobby hard against it. “This bill ... tells people with disabilities who face a terminal diagnosis, that may well prove inaccurate, that there is no dignity in our lives,” said Marilyn Golden of the Disability Rights Education & Defense Fund. “Assisted suicide is dangerous, and we are going to bring that message loud and clear to every member of the state Assembly and the governor.”

The 90-minute debate before the vote was deeply emotional. The author of the bill, Senator Lois Wolk told the Senate:  “I was 17 when my vibrant young mother ended a three-year struggle with metastatic cancer, and it was frankly brutal. “Her suffering was prolonged and unbearable – for her, certainly, and also for her family,” she said. “It does not have to be this way.” Senator Ted Gaines, on the other hand, argued that “Doctors should kill disease. They should kill pain. They should not kill their patients.”

The California bill is modelled on Oregon’s statute.  Two doctors must confirm that a patient has six months or less to live and his mental competence. He must make two verbal requests to a doctor for help in dying in the presence of witnesses, at least 15 days apart. The medication must be self-administered. There will be penalties for pressuring a patient to make a request or for forging a request.

Two factors almost certainly influenced the vote. California resident Brittany Maynard moved to Oregon last year in order to take her life legally. Videos of the 29-year-old’s plea for a change in the law – financed largely by Compassion & Choices, America’s leading assisted suicide lobby group – went viral.

And the California Medical Association has dropped its long-standing opposition to assisted suicide. “The decision to participate in the End of Life Option Act is a very personal one between a doctor and their patient, which is why CMA has removed policy that outright objects to physicians aiding terminally ill patients in end of life options,” said the CMA President.

The CMA is the first state medical association in the nation to change its stance on physician aid in dying. (Oregon’s medical association never opposed it.) Since 1987, the CMA opposed any law that would require a physician to aid in the death of a patient. In the 1990s, it also condemned voluntary active euthanasia by physicians and opposed physician-assisted suicide clinics. However, a CMA resolution to remain open to the multiple views and perspectives of various participants was also passed during that time, leaving the door open to the latest decision.



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June
05
 

The other California girl in a video about assisted suicide

Brittany Maynard’s story continues to reverberate in California’s debate about assisted suicide. However, opponents of bill SB-128 also have stories. Stephanie Packer, another California resident, was also 29 when doctors told her that her illness was terminal. They gave her three years, three years ago, so she feels that she is doing well.

Her disease is scleroderma, a hardening of tissue. In her case it has settled in her lungs. According to NPR, “Packer's various maladies have her in constant, sometimes excruciating pain, she says. She also can't digest food properly and feels extremely fatigued almost all the time.” However, she is buoyed up by the love and support of her four rambunctious children and her husband.

"Wanting the pain to stop, wanting the humiliating side effects to go away — that's absolutely natural," Packer says. "I absolutely have been there and I still get there some days. But I don't get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn't have to be."



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June
05
 

Belgian euthanasia under fire again

A leading academic has published a stinging critique of how Belgium administers its euthanasia law. Writing in the Journal of Medical Ethics, Rafael Cohen-Almagor, an Israeli professor of politics at the University of Hull, says that Belgians should be alarmed by the deliberate shortening of lives of some patients without their explicit voluntary request.

Consent is supposed to be a cornerstone of Belgium’s euthanasia act, but Cohen-Almagor, after surveying reports and articles, believes that the number of patients who are killed outside of the law is disturbing. “Ending patients’ lives without request is more common than euthanasia,” he says. He urges the Belgian medical profession to place reform high on their agenda.

Euthanasia has taken root in the culture of Belgium, he observes. Support for euthanasia among doctors is over 90%. “Social and peer pressure makes it difficult for those who oppose euthanasia to uphold their position in the liberal culture that has been developing,” he says. About 90% of the public also support it.

In this atmosphere, consent seems to have become optional for a particularly vulnerable group, “80-year-old patients or older who were mostly in coma or suffered from dementia”. Killing them is clearly against the law, but Belgian physicians are ignoring its letter and observing its spirit – as they interpret it. “Whether deliberately or not, the physicians were disguising the end-of-life decision as a normal medical practice,” he says, citing a 2010 study.

Cohen-Almagor highlights last year’s position paper by the Belgian Society of Intensive Care Medicine Council. This document says that “shortening the dying process with use of medication may sometimes be appropriate, 'even in the absence of discomfort'”. Furthermore, the final decision for terminal treatment lies in the hands of the medical care team, not necessarily the relatives. He criticizes the paternalism of the statement and points out that it fails to mention the word “consent”.

He concludes by asking: “If Belgium has been unable to control abuse—and does not seem to have tried very hard—what reason is there to believe it will be controlled in the future?” 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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June
05