Friday, September 04, 2015

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Twitter has just expanded its character limit from 140 to 10,000 for direct messages. Yay Smile. However, this is only for DMs, not for public tweets Frown. Which means that for the foreseeable future, Twitter will not be the ideal medium for debating contentious bioethical issues. In 140 characters there is not much room for nuance or complexity. 

Which means that bioethics journals, which have a much bigger characer limit, still have a role to play. In our lead story today Xavier Symons interviews the editor of the Journal of Medical Ethics, Julian Savulescu, who is also a professor at Oxford. He says that the internet has made his job harder. 

"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."

It's a fascinating conversation. Check it out. 

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Michael Cook
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This week in BioEdge

2015-08-24 11:08 PM
Interview: Julian Savulescu, editor of JME
by | Aug 26, 2015
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tags: interviews, Journal of Medical Ethics, Julian Savulescu

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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Australia to ponder sex selection
by | Aug 29, 2015
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tags: Australia, 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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Children contest will of Nitschke follower
by | Aug 29, 2015
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tags: assisted suicide, Australia, euthanasia, Exit International, Philip Nitschke

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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Scepticism greets new stem-cell regulations in China
by | Aug 29, 2015
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tags: China, stem cell business, stem cell tourism

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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Bioethics on US campaign trail
by | Aug 29, 2015
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tags: abortion, Down syndrome, US

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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The risks of freezing
by Xavier Symons | Aug 29, 2015
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tags: egg freezing, fertility

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

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Scores of depressed patients euthanised in Belgium
by Xavier Symons | Aug 29, 2015
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tags: assisted dying, euthanasia, existential suffering, mental illness

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. 

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He’s got the brains, but…
by Xavier Symons | Aug 29, 2015
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tags: neuroethics, new frontiers

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.”

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Trust in the system
by Xavier Symons | Aug 29, 2015
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tags: doctor-patient relationship, informed consent, learning healthcare system, trust

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.” 

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New book chronicles history of British bioethics
by | Aug 29, 2015
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tags: bioethics, book reviews, UK

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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