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July
12
  6:10:00 PM

Lord Falconer’s assisted suicide bill under attack

Criticism of Lord Falconer’s assisted suicide bill is mounting as the proposed legislation returns to the House of Lords. Various public figures have spoken out against the bill, arguing that it would put elderly citizens at risk and may escalate to a Netherlands-style euthanasia epidemic.

Professor Theo Boer, University of Utrecht bioethicist and member of a review committee monitoring euthanasia deaths in the Netherlands, warned the UK parliament on Wednesday about legalising the procedure.

Professor Boer recounted how euthanasia deaths in the Netherlands have doubled in the past six years, and may reach a record 6000 in the year 2014.

Boer is concerned that, as in the Netherlands, the law will be manipulated and existential suffering will become a common reason for AS:

‘Cases have been reported in which a large part of the suffering of those given euthanasia or assisted suicide consisted in being aged, lonely or bereaved. 

“Some of these patients could have lived for years or decades. Pressure on doctors to conform to patients’ – or in some cases relatives’ – wishes can be intense.” “Don’t do it”, professor Boer tersely stated.

Archbishop of Canterbury Justin Welby published an article in the Times on Saturday expressing his opposition to the bill. He warned that the legislation could be abused and elderly pressured into taking their own lives.

“Abuse, coercion and intimidation can be slow instruments in the hands of the unscrupulous, creating pressure on vulnerable people who are encouraged to “do the decent thing”.

He continued,

“Even where such pressure is not overt, the very presence of a law that permits assisted suicide on the terms proposed by Lord Falconer of Thoroton is bound to lead to sensitive individuals feeling that they ought to stop 'being a burden to others'”. 

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July
12
  6:00:00 PM

Dutch doctor challenges informed consent regulations

A new article in the Journal of Medical Ethics suggests that medical authorities lessen informed consent requirements for perinatal sterilization. Dr. Douwe Verkuyl of Refaja Hospital, the Netherlands, argues that tubal occlusion (TO) should be offered to women after a traumatic birth, even if they haven’t previously been consulted during pregnancy.

Under current International Federation of Gynaecology and Obstetrics (FIGO) regulations doctors can provide a TO at the time of birth provided the patient has been consulted during pregnancy. If there has been no early consultation doctors are prohibited from performing the procedure.

FIGO is concerned that vulnerable women will rashly chose sterilization at the time of birth and later regret it.

Dr. Verkuyl questions the ‘vulnerability’ of women at the time of birth. He claims that there is no empirical evidence to support the belief that regret is higher in cases of ‘belated consultation’ perinatal TO. The risk, he asserts, is “possible but unproven”.

Verkuyl argues that, in developing countries, the benefits of perinatal TO for a women’s health outweigh the possible drawbacks:

“Doctors should always consider whether the costs of not offering the TO option are likely to outweigh the possible but unproven additional risk of TO regret after belated, as compared with early, TO counselling.”

Verkuyl asserts that in developing countries alternative contraceptive methods are often hard to come by and perinatal TO might be the only contraceptive option. It may be the only means of preventing “unsettling” and “dangerous” future pregnancies.

Many see Verkuyl’s new article as a worrying challenge to informed consent regulations. It flies in the face of prudent advice found in FIGO guidelines: “Even if a future pregnancy may endanger a womans life or health, she will not become pregnant immediately, and therefore must be given the time and support she needs to consider her choice.” 

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July
12
  5:43:00 PM

Nitschke under investigation yet again

Pro-euthanasia campaigner Phillip Nitschke is being investigated for his involvement in the death of 45 year old West Australian man. The Medical Board of Australia is concerned that Nitschke advised Mr. Nigel Brayley to commit suicide without first suggesting formal psychiatric assessment. It appears Brayley was suffering from depression after the death of his wife and loss of his job in the mining industry.

In an interview with the ABC, Nitschke said Brayley was “not at the level” of severe depression.

Others are doubtful. “[Nitschke] gravely misinterprets how life events figure in depressive decision making”, said Monash bioethicist Paul Biegler. “Stresses such as job loss, money trouble, relationship breakdown and indeed criminal investigation figure in two-thirds of depressive episodes”.

At the time of Brayley’s suicide police were investigating his wife’s death as a possible murder.

Beyond Blue chairman Jeff Kennett was furious at Nitschke. “I was appalled…

what I can't understand is a medical professional actually supporting them to go out ... to leave us”, Kennett said.

The Australian Medical Board refused to comment on the matter. 

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July
12
  4:42:00 PM

Questions over wireless-controlled contraceptives

New ethical dilemmas may be coming if a Massachusetts company succeeds in developing a contraceptive chip which could be activated and deactivated with wireless technology.

MicroCHIPS will begin preclinical testing of its device next year. If it passes safety and efficacy tests, it could be on the market by 2018. According to Technology Review, “the device would be more convenient for many women because, unlike existing contraceptive implants, it can be deactivated without a trip to the clinic and an outpatient procedure, and it would last nearly half their reproductive life.”

The chip measures 20 x 20 x 7 millimetres and would be implanted under the skin of the buttocks, upper arm, or abdomen where it would dispense daily doses of the hormone levonorgestrel. To conceive, women would turn the dosage off with a remote control. To resume contraception, they would log in to the system and turn it back on. It is designed to dispense contraception for 16 years. The device could dispense other drugs, but the company is initially using contraceptives.

The idea originated with philanthropist and billionaire Bill Gates, who is keen to develop new methods of birth control as part of his foundation’s programs for the developing world.

Even if the chip is safe and effective, wireless control raises a host of issues which need to be addressed. Any device which is controlled wirelessly can be hacked. Absolutely watertight solutions would be needed to prevent angry ex-boyfriends, the NSA, snooping journalists or controlling governments from manipulating women’s fertility.

Dr Robert Farra, of MIT, believes that these scenarios are unrealistic. He told the BBC: "Communication with the implant has to occur at skin contact level distance. Someone across the room cannot re-programme your implant. Then we have secure encryption. That prevents someone from trying to interpret or intervene between the communications." 

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July
12
  3:38:00 PM

Oldest Down syndrome skeleton found in France

Earlier cultures may not have stigmatized people with Down syndrome as much as we do, archaeologists have suggested after examining a site in France. In an article in the International Journal of Paleopathology, says Maïté Rivollat at the University of Bordeaux in France and colleagues comment on a skeleton of a 5–7 year old child from Saint-Jean-des-Vignes in north-eastern France from the 5th or 6th century. It appears to be the earliest and youngest skeleton of its type ever discovered.

The child almost certainly suffered from Down syndrome, but he or she was not treated any differently from other members of her community when buried. He was placed on her back and oriented east-west with the head at the western end, just like most of the others found in the necropolis.

"[we] infer that this Down syndrome child was not treated differently at death than others in the community. We interpret this as meaning that the child was maybe not stigmatized during life, the first time a Down syndrome individual has been so viewed in the context of the ancient community."

Although some archaeologists believe that there are depictions of Down syndrome in painting and sculpture as old as 1500BC, only two “sub-adult” skeletons have been discovered.  

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July
12
  2:47:00 PM

Government responds to Canadian bioethicists’ complaint

Last week BioEdge reported that Canadian bioethicists were angry at the Harper Government’s refusal to appoint a strong and formally credentialed leader to oversee ethics in the Canadian Institutes of Health Research (CIHR). This week a spokesman for the CIHR, David Coulombe, responds.

BioEdge: Just for background: What has provoked the call for more and closer ethics oversight?  Have there been incidents in the recent past which were deemed unethical behaviour?

David Coulombe: In 2012, CIHR Governing Council directed CIHR to undertake a review of the approaches the organization currently uses to meet its mandate in the area of ethics.  What provoked the review was Governing Council’s wish to ensure effective alignment of internal efforts, as well as to achieve optimal impact vis-à-vis CIHR’s direction and processes and those of the newly created Tri-Council (CIHR, NSERC, SSHRC) Secretariat for the Responsible Conduct of Research.  The result was the establishment of the Task Force on Ethics Reform at CIHR, which conducted the review.

As far as I can see, what Canadian bioethicists want is one of their fraternity in the organisational structure with some clout.  Why is it impossible to have a VP for ethics?

CIHR Governing Council based its final decision on an international scan of health research funders.  These organizations were the Medical Research Council (UK), National Health and Medical Research Council (Australia), National Institutes of Health (USA), and the European Commission.  The international scan revealed that several models are used for incorporating ethics at the core of research funding organizations.  For example:

  • NIH in the USA has a mechanism for cross-organization coordination of ethics activities involving clinical research;
  • NHMRC in Australia has a statute-based Health Ethics “Principal Committee” of its Governing Council, and can establish ad hoc working group(s) with ethics expertise as needed.

The scan also revealed that leaders of the ethics functions within health research funding organizations are not typically ethics experts.  Rather, they have experts throughout the organization and their committees to support them.  CIHR Governing Council was convinced that the proposed new leadership model, championed by CIHR’s Chief Scientific Officer/VP-Research and Knowledge Translation – and with an enhanced Governing Council Standing Committee on Ethics – will lead to a cohesive and integrated approach to ethics at CIHR.

Why doesn't the "ethics champion" have a degree in bioethics or ethics?  Could not someone else have been found who had the credentials?

CIHR’s Chief Scientific Officer/VP-Research and Knowledge Translation, Dr Jane Aubin, believes in the importance of ethics and has made a formal commitment to championing ethics at CIHR.  This commitment has been fully endorsed by the President, Governing Council and Scientific Directors.

Dr Aubin has had many opportunities to learn about ethics in her past professional experience as an end user:

  • as a basic scientist having to deal with the ethical use of animals in research;
  • as a researcher submitting research protocols to the Research Ethics Board;
  • as a researcher and administrator within the University of Toronto, including  integrity committees; and
  • as a Scientific Director of one of CIHR’s Institutes, fully integrating the Ethics Designate of the Institute’s Advisory Board into discussions and decisions, and championing ethics initiatives in the Institute.

More recently, in her role as Chief Scientific Officer and VP-Research and Knowledge Translation here at CIHR, she has had the opportunity to build on this knowledge through her participation in meetings of the Standing Committee on Ethics, discussions with Institute Advisory Board Ethics Designates, and discussions with the committee advising on CIHR’s Strategy for Patient-Oriented Research streamlining of ethics review.

Finally, Dr. Aubin can count on extensive ethics expertise at CIHR, beginning with the new Standing Committee on Ethics, as well as from the Ethics Office and the Tri-Council Secretariat on Responsible Conduct of Research.

Is this controversy an example of credentialism gone mad?

The ethics community is engaged and passionate.  While we disagree on how the CIHR ethics mandate can best be achieved, we agree that CIHR must continue to play a leadership role.

We are committed to playing a strong leadership role by integrating ethics at the core of CIHR and encouraging interdisciplinary, innovative, and integrative research on ethical issues pertaining to health.  We believe that our new structure with a strong shared leadership will create an environment where ethics is at the forefront of what we do and that it will gain the reassurance and recognition that it deserves.

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July
12
  2:14:00 PM

Remembering Nikola Tesla, eugenicist

Billionaire entrepreneur Elon Musk celebrated Nikola Tesla’s birthday this week with a US$1 million donation to set up a Tesla museum in Long Island. The Serbian-American inventor, who died in 1943, was a prodigious inventor and is regarded by some of his admirers as the greatest geek who ever lived. With time, he has become a cult figure, which explains his appearance in the Oscar-nominated film The Prestige

Apart from inventing alternating electric current, Tesla was a futurist. In 1935 he gave an interview to the American magazine Liberty (now defunct) in which he peered 100 years into the future. Of interest to readers of BioEdge is his enthusiastic endorsement of eugenics, a common feeling before World War II.

“The year 2100 will see eugenics universally established. In past ages, the law governing the survival of the fittest roughly weeded out the less desirable strains. Then man’s new sense of pity began to interfere with the ruthless workings of nature.
“As a result, we continue to keep alive and to breed the unfit. The only method compatible with our notions of civilization and the race is to prevent the breeding of the unfit by sterilization and the deliberate guidance of the mating instinct.

“Several European countries and a number of states of the American Union sterilize the criminal and the insane. This is not sufficient. The trend of opinion among eugenists (sic) is that we must make marriage more difficult. Certainly no one who is not a desirable parent should be permitted to produce progeny. A century from now it will no more occur to a normal person to mate with a person eugenically unfit than to marry a habitual criminal.”

Tesla is a hard man to pigeonhole. But perhaps his views were driven by his mechanistic view of human nature. In the same interview he asserted that “Man, like the universe, is a machine”. And rather than technology adapting to human needs, humans need to adapt to technology:

“At present we suffer from the derangement of our civilization because we have not yet completely adjusted ourselves to the machine age. The solution of our problems does not lie in destroying but in mastering the machine.”

Tesla's admirers lament the fact that many of his ideas died with him. Perhaps this is one which is better off forgotten.

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July
05
  3:57:00 PM

Canadian bioethicists sunk in dejection over government inaction

The bioethics community in Canada is enraged at the Harper Government’s refusal to appoint a strong and formally credentialed leader to oversee ethics in the Canadian Institutes of Health Research (CIHR).

In a report last year a government-appointed task force reminded the government that “CIHR is obligated legally to ensure that ethics has a central place within the organization. This is not optional; it is legally required.” Subsequently, an open letter to parliamentarians signed by 50 bioethicists and health law experts has demanded “strong leadership” from a person “recognized nationally and internationally as a leading scholar and researcher in ethics”.

It was not to be. Instead the CIHR’s Governing Council snubbed the bioethicists by appointing a so-called “Ethics Champion” in the CIHR. Taking the fall for the Governing Council is Dr Jane Aubin, who is a highly respected expert in medical biophysics. But she had to confess to a hostile audience at the Canadian Bioethics Society Conference in Vancouver that she had no formal qualification in ethics. In the blog Impact Ethics Juliet Guichon, of the University of Calgary, wrote:

“We were all exceedingly polite; yet we were sad. In our respective workplaces, we teach the ethics equivalents of the Empress of Ireland and the Titanic. Obviously, trouble can arise in health research because of lack of understanding or inattention to ethics.
“We didn’t (and still don’t) get it. Why would Ottawa not want a person with ethics expertise at the helm to avoid trouble, and to foster research in best practice? It is false economy to do otherwise, as the cruise industry knows. Should we wait for another Costa Concordia before valuing prevention experts?”  

* The text incorporates a correction to the original version.

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July
05
  3:00:00 PM

What are the issues in post-mortem sperm retrieval?

In 2010 21-year-old Niklas Evans was assaulted outside a bar in Texas. He ended up in a coma and died after 10 days. His heartbroken mother, Missy Evans, requested the hospital to retrieve her son’s sperm so that she could create a grandchild with a surrogate mother. The case was too controversial for American fertility clinics so she ended up travelling to South Africa.

Did Missy and her doctors act ethically in removing sperm from Niklas’s dead body without his consent? This is the question that Anna Smajdor, of the University of East Anglia, tackles in the Journal of Medical Ethics, based on a discussion of some cases which have occurred in England. Like many other bioethicists, she opposes it.

The dead still have interests. The logic of post-mortem sperm retrieval without explicit consent could be extended to many other issues,  like organ extraction, exhibition of the body, probate law and so on. Legally speaking, much more than a child is at stake.

The validity of inferred consent is a dangerous principle. “In medicine generally, consent for procedure X cannot be inferred from someone's previous beliefs about situation Y,” she writes. If men knew what was involved in electro-ejaculation, they might well refuse their consent, even if they did express a wish to have children.

Proxy consent for one’s own benefit is a dangerous principle. She writes: 

Relatives can agree to donate a loved one's tissue, but they cannot demand access to that tissue for themselves. The reasons for this are straightforward. Human tissues and organs are valuable commodities. This means that the bodies of dead and dying patients are vulnerable to exploitation. If the person testifying as to the patient's wishes and providing proxy consent is alsothe one who stands to gain from the tissue that is made available, there is a clear conflict of interest.

The desire for offspring is not sufficient reason. From a woman’s ardent desire for a child one cannot infer consent. “Couples’ reproductive decisions are not necessarily based on symmetrical and equally held desires … It is risky and unjust to assume that one partner's reproductive desires can be inferred from those of the other. And if this is the case in the living, it is still more so in the case of the dead or dying, who cannot articulate their dissent.”

Smajdor makes two specific recommendations. First, that the rules for posthumous gamete donation be tightened. Second, that the discretionary authority of the UK’s fertility watchdog, the Human Fertilisation and Embryology Authority, be rescinded so that it cannot permit the export of gametes obtained without consent. 

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July
05
  2:49:00 PM

Court orders France to recognise surrogacy children

Surrogacy may be banned in France, but it must recognise children born to surrogate parents abroad, the European Court of Human Rights has ruled.

This may have brought to an end a long-running case brought by two French families who had both used an American surrogate mother to gestate a child conceived with the father’s sperm. The ECHR said that refusal to recognise the children’s parentage “undermined the children’s identity within French society”.

Courts in California and Minnesota had recognised the couples as the legal parents more than 10 years ago. However, French authorities, suspecting that the cases involved surrogacy arrangements, refused to enter the birth certificates in the French register of births, marriages and deaths. the register. The children were living in a legal limbo – residents of France, but not citizens or legally-recognised offspring.

An appeal to the French Court of Cassation in 2011 failed. That court ruled that recording the births in the register would give effect to a surrogacy agreement that was null and void on public-policy grounds under the French Civil Code.

“This is a great relief,” declared one of the fathers, Dominique Menesson, after the judgement and called on French authorities not to appeal against it. The lawyer for the two couples has claimed that 2,000 children are in the same situation as his clients’ children.

The case may have broader implications. If children of overseas surrogate mothers will automatically become French citizens, it will be easier for gay couples to create families. Dean Hutchinson, a lawyer for Circle Surrogacy, an international agency which specialises in gay clients, observed:

“Countries that are members of the European Court of Human Rights must recognize the parentage of parents who have a genetic connection to their children born through surrogacy abroad, as this is in the best interests of the child. Our analysis of the case shows that, as long as at least one parent has a genetic connection to the child, the authorities must recognize parentage and grant citizenship— even if the country does not allow surrogacy. This is a blessing to intended parents from countries like France, Italy, Spain, and Germany that do not recognize surrogacy and have placed impediments to parents returning home with children born through surrogacy.”
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