Why should we respect conscientious objectors?


A powerful debate over conscientious objection is brewing in Canada. The Canadian parliament is drafting a law to implement a Supreme Court order to allow assisted suicide and euthanasia. Some doctors fear that they will be forced to perform the procedures or refer patients to more compliant doctors.

Writing in the Canadian Family Physician, Dr Nancy Naylor, a general practitioner, declared that she had decided to retire:

"I refuse to let anyone or any organization dictate my moral code. For this reason I am not renewing my licence to practice medicine . I have practiced full scope family medicine , including palliative care for the past 37 years and solely palliative care for the past 3 years. I have no wish to stop. But I will not be told that I must go against my moral conscience to provide standard of care."

Appeals to conscience are emotionally powerful. But do doctors have a right to appeal to their “moral conscience” to refuse to carry out legal procedures?

Today one of Canada’s most influential bioethicists and a colleague present the case for ignoring conscience claims in the Journal of Medical Ethics. Professor Udo Schuklenk, who is also co-editor of the journal Bioethics, and Ricardo Smalling, both of Queen’s University in Ontario, contend that “Forcing patients to live by the conscientious objectors' values constitutes an unacceptable infringement on the rights of patients.”

In a nutshell their argument is that medical professionals have made a contract with society. In return for a lucrative monopoly on the provision of an essential service, patients have a right to demand that they provide socially acceptable and legal services. By withholding their services, they are exploiting the power differential between them and patients. They cite American bioethicist R. Alta Charo, who says:

“claiming an unfettered right to personal autonomy while holding monopolistic control over a public good constitutes an abuse of the public trust—all the worse if it is not in fact a personal act of conscience but, rather, an attempt at cultural conquest”.

In Schuklenk and Smalling’s view, conscientious objection, based as it is on indemonstrable premises, is arbitrary and fickle. “Today it might be abortion and assisted dying, tomorrow it might be the use of the tools of personalised medicine or something else altogether.”

There might be a psychological cost to doctors whose conscientious beliefs are not accommodated by the state, but denying services to patients in need of services like abortion or euthanasia is more costly still. If a doctor feels (like Dr Naylor) uncomfortable, he or she should leave the profession. Ultimately, what matters is what society has declared to be legal, not the inscrutabale dictates of an individual conscience. Quoting the great British 17th century philosopher Thomas Hobbes, Schuklenk and Smalling argue: “the law is the public conscience by which [a citizen] hath already undertaken to be guided”. If the law changes, consciences must change as well. Otherwise there would be anarchy.

This is a stimulating essay which is sure to be influential for the future of conscientious objection in Canada. 





This article is published by Michael Cook and BioEdge 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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Donor anonymity is dead


from the Australian documentary, Sperm Donors Anonymous   

Guaranteeing the anonymity of sperm and egg donors is a controversial topic. On the one hand children may want to connect with their biological parents; on the other, the parents may have agreed to donate only because the transaction was anonymous.

However, as three British academics point out in an article in the journal Human Reproduction, the walls of secrecy have already been breached and there is nothing to protect any more. The growing popularity of personal genetic testing means that it is becoming possible for children to track down their genetic parents without any assistance from the records of IVF clinics. There are already a number of websites which help people connect with half-siblings fathered by anonymous sperm donors. As the databanks grow, it will be possible to link them to the father as well.

“All parties concerned must be aware that, in 2016,donor anonymity does not exist,” write the authors.

“Whether they are donating in a country that uses anonymous donation or not, donors should be informed that their anonymity is not guaranteed. They may be traced if their DNA, or that of a relative, is added to a database. There will also need to be consideration of any children that a donor might have, as they might find out their parent was a donor from such publicly available information.

“Together, these concerns highlight the importance of a wide-ranging societal conversation about how to best safeguard and promote the interests of donor-conceived offspring and protect the rights of donors. Specifically, there is a need to ensure that new genetic information is communicated in a way that promotes both the safety and privacy needs of offspring and donors.”





This article is published by Michael Cook and BioEdge 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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Fallout from Chernobyl continues 30 years on


Does environmental ethics form part of bioethics? If yes, then surely one of the world’s worst environmental disasters – Chernobyl – is of grave significance.  

30 years ago this year, the Soviet Union scrambled to contain the fallout of a reactor meltdown in the town of Pripyat, the Ukraine. 31 people were killed directly by the incident; it is unclear how many have been affected by the radioactive waste released into the atmosphere.

Three decades on authorities are still working to stabilizing the collapsing reactor. It is unclear just how long it will take until the Chernobyl area can be reinhabited; most estimates are in the hundreds of years.

A recent study published in the journal Frontiers in Ecology and the Environment appears to indicate the evacuated region is not as toxic for animals as was previously thought.  The study, which attempted to correlate radiation levels with the movement of animal populations, found that despite the lingering impact of the nuclear disaster, "Radiation did not negatively affect occupancy probability for any species," and that "the current distribution of wildlife within the CEZ is unaffected by [cesium-137] contaminant densities."

Despite the note of optimism to the study, the 30-year anniversary has brought attention to the potential long term effects yet to be felt. According to the Canadian-based NGO The Chernobyl Foundation, “the overall effect on future generations is not clear yet, since only 10% of overall problems can be observed in the first generation. It is estimated that, by 2050, new debilitating health problems will appear that are linked to the Chernobyl nuclear disaster.”

Nuclear regulatory bodies need to integrate a ‘safety culture’ in their organisational structure and ethos, argues University of Southern California Engineering professor Najmedin Meshkati. In light of the relatively recent Fukushima Nuclear Disaster, it seems that such an approach has not yet been taken. 




MORE ON THESE TOPICS | environmental ethics

This article is published by Xavier Symons and BioEdge 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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Illegal organ trade burgeoning in Iraq


In the face of continuing economic hardship Iraqis have turned to the illegal organ trade.  

According to a BBC report, gangs in the country are offering up to $10,000 US for a kidney, and have been increasingly targeted the country's poor. Almost a quarter of the country’s population live in abject poverty – according to World Bank statistics – and some destitute families are actively seeking out organ traders.

"The phenomenon is so widespread that authorities are not capable of fighting it," said Firas al-Bayati, a human rights lawyer, told the BBC.

"I have personally dealt over the past three months with 12 people who were arrested for selling their kidneys. And poverty was the reason behind their acts," he said.

Under Iraqi law only relatives are allowed to donate organs their organs to one and other. The trafficking of organs is strictly prohibited, with penalties ranging from three years in prison to death.

In July last year the Iraqi English-language news service NIQASH published a feature on the organ trade in Iraqi Kurdistan, a semi-autonomous region of the country. Displaced persons have flooded into region since the beginning of the Syrian civil war, and opportunistic organ traffickers have been very active in the sprawling refugee camps. 

According to NIQASH, organ ‘donors’ typically receive around $4000 for a kidney; traffickers will on-sell the kidney in other regional centres for up to $20000.

The regional government has been slow to implement laws outlawing the trade.  




MORE ON THESE TOPICS | organ procurement, organ trafficking

This article is published by Xavier Symons and BioEdge 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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IVF experts divided over mosaic embryos


Debate is intensifying among fertility specialists about the use of mosaic embryos in IVF.  

Mosaic embryos – embryos that are characterized by irregular numbers or arrangements of chromosomes in some cells – have typically not been used by fertility specialists (at least in the US) due the likelihood that any resulting foetus will suffer from genetic disorders.

Yet some experts believe the embryos are safer than popular opinion suggests; others are going as far as to advocate the routine use of mosaic embryos in IVF clinics.

One reproductive medicine expert recently claimed that preimplantation genetic screening processes used to detect abnormal embryos are inaccurate and that many of what are known as ‘mosaic embryos’ are actually gametes that will lead to healthy babies.

Dr. Norbert Gleicher, the director of the Center for Human Reproduction in New York, recently tested PGS by tranferring seemingly abnormal embryos into women seeking IVF. Gleicher has reported four normal pregnancies since he began his test.

“I think the biological hypothesis that you can, from a single biopsy, determine whether an embryo is normal or chromosomally abnormal — that is flawed,” he recently told the New York Times.

Gleicher’s view is controversial, with many PGS specialists arguing that new diagnosis techniques allow for very low rates of false-negative readings.

Three researchers from the world’s largest genetics laboratory, Reprogenetics, recently published a paper in the journal Fertility and Sterility arguing against Gleicher’s view. The paper ostensibly shows clinical value of HR-NGS for detecting mosaicism and as a selection tool to assist in identifying embryos with the greatest likelihood of viability; the authors also claim to have established that mosaic embryos can be considered a distinct category in terms of viability.

“Previous embryo selection methods had limited possibility of detecting mosaic embryos”, said the lead author of the article, Santiago Munne. “Now…we can detect mosaic embryos, which miscarry more frequently and implant less frequently, allowing the most viable embryos to be prioritized for transfer”. 




MORE ON THESE TOPICS | clinical ethics, IVF

This article is published by Xavier Symons and BioEdge 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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Nascent concerns about womb transplants


Bioethicists have sounded a note of caution about womb transplants after a failed attempt at the procedure in a US fertility clinic.

In late March a participant of an American trial had to have her recently transplanted womb removed. Ironically, the reverse-transplantation was necessitated by a common uterine infection unrelated to the initial operation.

Still, Some have used the failed operation as an opportunity to question the merits of the research. Southampton Law School lecturer Natasha Hammond-Browning doubts that the procedure has a net benefit for the women involved:   

“…I do not deny that for women without wombs who desire a uterus transplant, and receive one as part of one of the clinical trials that are happening, may well argue that their quality of life has been improved through the ability to experience one or two pregnancies. However, I believe that we need to ask: at what cost?...”

Other academics have enumerated various potential negative consequences that the procedure could have, and some suggest that even the ostensible benefits of the transplant have been misconstrued. As early as 2011 a group of researchers from Australia’s Macquarie University, discussed ethical problems surrounding the practice, noting, for example, that the limited nerve connections between the uterus and the recipient’s body may in fact entail an absence of the typical positive feelings experienced by a woman during pregnancy. The authors of that study did, however, note a certain inconsistency that would result from deny womb transplants to infertile women:

“Where a woman does not have a functioning uterus, it is far from clear how we might legitimately encourage use of a surrogate (with all its attendant difficulties) but withhold the opportunity to employ an (in principle) established surgical technique – namely, organ transplantation – in order to allow her to achieve a pregnancy ‘of her own’.”

US Researchers remain positive about the uterine transplant trials, despite the setbacks already encountered. The surgeon who is leading trials at the Cleveland Clinic, Dr. Goran Klintmalm said he and his doctors had discussed their failed transplant with his team. “What they experienced is something that helps us to fine tune our protocol and approach, to hopefully avoid having the same situation,” Dr. Klintmalm said.




MORE ON THESE TOPICS |

This article is published by Xavier Symons and BioEdge 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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Horrific abuse case raises questions over international surrogacy


An Australian case of sexual exploitation of infants has raised questions about international surrogacy. An unnamed 49-year-old man in rural Victoria has pleaded guilty to abusing not only two young nieces, but twins whom he fathered with the help of a donated egg from a woman in Ukraine at an IVF clinic in Asia.

The case came to the attention of police when they were alerted to images which were circulating on the internet.

His abuse of his daughters began when they were 27 days old and continued for seven months. Amongst the 13,000 images and videos in his possession when he was arrested were 300 of his own daughters.

The man has been married for 26 years but his wife was unaware of his illegal activities. The court was told that he had asked his wife to have an abortion in the early 1990s and appeared to be uninterested in having children. However, after he began abusing his nieces in 2009, his interest revived. After natural conception and IVF failed, his wife suggested surrogacy. He agreed although his intention was to produce children whom he could abuse.

The twins are now in state care.

The House of Representatives Standing Committee on Social Policy and Legal Affairs is to report on the regulatory and legislative aspects of international and domestic surrogacy before June 30.

Another Australian surrogacy case about an “abandoned” Down syndrome baby which attracted international attention has been settled in a West Australian court. In 2014 it was alleged that David Farnell and his wife Wendy spurned Gammy, a Down syndrome baby, which a Thai surrogate mother had gestated for them, but did take home Pipah,  his a healthy twin. The ensuing outrage increased when it emerged that Mr Farnell was a convicted sex offender.

However, after a lengthy investigation, Stephen Thackray, chief judge of the West Australian Family Court,  has determined that the Farnells had tried to take Gammy home but that the Thai surrogate, Pattaramon Chanbua, had bonded with him and wanted to keep him. 

He also ruled that Mr Farnell’s past was behind him and that he could be a good father to Pipah and declared that the Farnells had "suffered great humiliation and enormous stress for things they did not do".

However Judge Thackray had some harsh words for the surrogacy industry:

“ … surrogate mothers are not baby-growing machines, or 'gestational carriers'. They are flesh and blood women who can develop bonds with their unborn children. The appalling outcome of Gammy and Pipah being separated has brought commercial surrogacy into the spotlight.

"Quite apart from the separation of the twins, this case serves to highlight the dilemmas that arise when the reproductive capacities of women are turned into saleable commodities, with all the usual fallout when contracts go wrong."





This article is published by Michael Cook and BioEdge 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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Where to publish your bioethics articles


Two Swedish bioethicists have compiled a list of the English-language bioethics journals which are “reputable, trustworthy and have real impact” – together with a companion list of journals by predatory publishers which sound reputable, but probably aren’t. It appears on The Ethics Blog, a publication at Uppsala University.

Here is the list of reputable journals from Stefan Eriksson, at Uppsala, and Gert Helgesson, at the Karolinska Institute. The number in parentheses is the journals’ five-year impact factor.

  • Accountability in Research
  • American Journal of Bioethics (4.0)
  • Bioethics (1.5)
  • Biology & Philosophy (1.2)
  • BMC Medical Ethics (1.7)
  • Cambridge Quarterly of Health Care Ethics
  • Clinical Ethics
  • Developing World Bioethics (1.7)
  • Ethics (1.8)
  • Ethics and Information Technology (1.1)
  • Hastings Center Report (1.4)
  • Health Care Analysis (1.2)
  • Journal of Academic Ethics
  • Journal of Agricultural & Environmental Ethics (1.1)
  • Journal of Clinical Ethics
  • Journal of Empirical Research on Human Research Ethics (1.4)
  • Journal of Law, Medicine and Ethics (1.1)
  • Journal of Medical Ethics (1.4)
  • Journal of Medicine & Philosophy
  • Kennedy Institute of Ethics Journal (1.1)
  • Medicine Health Care & Philosophy
  • Milbank Quarterly (6.3)
  • Neuroethics (1.2)
  • Nursing Ethics (1.6)
  • Public Health Ethics (1.1)
  • Research Ethics
  • Science & Engineering Ethics (1.1)
  • Science, Technology and Human Values (2.5)
  • Social Science and Medicine (3.5)
  • Theoretical Medicine and Bioethics

Eriksson and Helgesson admit that their list is far from complete. In the comments on their blog post, other bioethicists suggested the addition of the Journal of Bioethical Inquiry, the Indian Journal of Medical Ethics, and the International Journal of Feminist Approaches to Bioethics.

As the long list of where not to publish, consult their post!




MORE ON THESE TOPICS | bioethics journals, publication ethics

This article is published by Michael Cook and BioEdge 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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Summer school in bioethics


A Manhattan-based NGO, Global Bioethics Initiative (GBI), has organized two bioethics summer schools, one in New York City and one in Dubrovnik, Croatia, in July and August.

The program in NYC is open to everyone from senior high school students to professionals. The program in Dubrovnik is aimed especially at undergraduates and post-graduates planning to work in academia, biomedical and health-related industries.

The lectures and discussions deal with the ethics of contentious issues ranging from end-of-life care, to organ donation, to mental illness and addiction and to HIV surveillance.

Both programmes include a series of lectures and seminars by notable faculty, field trips, film screenings, evening events with guest speakers open to public and a mini conference prior to the graduation ceremony.

Partial scholarships for low-income country residents and Continuing Medical Educatiom credits are available.

Students can apply to intern with GBI this summer but also to attend the programs. For further information, contact Dr Ana Lita.

GBI is a not-for-profit international educational organization founded in 2011. GBI is associated with the United Nations Department of Information and  enjoys special consultative status with the United Nations Economic and Social Council.

It keeps the international community, policy decision-makers, the media, and the public informed about important bioethical issues through educational activities, like the summer school. Many of the issues addressed by GBI are relevant to the work of the United Nations, including hot-button topics like human organ trafficking, and the ethics of population ageing.




MORE ON THESE TOPICS | bioethics, bioethics education

This article is published by Michael Cook and BioEdge 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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Chinese scientists modify human embryos in second experiment


A year after the first genetically-engineered human embryos were created in China, a different Chinese team has repeated the experiment, with much the same results: failure.

Researchers from Guangzhou Medical University gathered 213 surplus IVF embryos which were not viable because they had an extra chromosome. Using the CRISPR–Cas9 technique, they spliced into the genome of 26 embryos a mutation that protects people against the HIV virus. After three days they destroyed the embryos.

The experiment was published in an obscure outlet, the Journal of Assisted Reproduction and Genetics.

The results were by no means spectacular. The technique only worked in 4 embryos. And the modification was not present in all of the chromosomes and in some cases, other mutations were introduced.

Harvard stem-cell scientist George Q. Daley told Nature, “This paper doesn’t look like it offers much more than anecdotal evidence that it works in human embryos, which we already knew.”

Some scientists were uneasy about the ethics of the experiment. Even the authors concluded that “We believe that any attempt to generate genetically modified humans through the modification of early embryos needs to be strictly prohibited until we can resolve both ethical and scientific issues.” One scientist asked why experiments like this were not being done on primates first. Another said that even though the ethics paperwork had been done, “Introducing [a gene] and trying repair, even in non-viable embryos, is just playing with human embryos.”

Dr Daley also questioned the need for the experiment: “the science is going forward before there’s been the general consensus after deliberation that such an approach is medically warranted."

However, Nature News says that scientists believe that similar research in going on in several labs in China.





This article is published by Michael Cook and BioEdge 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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Gendercide becomes an issue in Canada


The problem of gendercide has spread from India to Canada, researchers claim in the Canadian Medical Association Journal (CMAJ). A statistical analysis of births in Ontario found that the male-to-female sex ratio at birth -- which ranges between 1.03 to 1.07 naturally -- is as high as 1.96 if an Indian-born woman already had two daughters.

The researchers believe that over the past 20 years, there are 4,472 “missing” girls in Canada as a result of a preference for males amongst Indian immigrants. This happens mostly when both parents were born in India.

Researchers looked at data on more than 1.2 million births in women with having a third child in Ontario between 1993 and 2012. Of these, 153,829 (12.6%) were immigrant women from Asia.

Among women born in India who already had two girls, the ratio of male to female babies for the third birth was almost double the average, with 196 boys born for every 100 girls. If an Indian-born mother with two daughters had had an abortion before the third child, the sex ratio increased to 326 boys for every 100 girls and to 409 boys if the mother had had multiple abortions.

If a woman had an abortion at or after 15 weeks, when ultrasound can determine sex of the fetus, the sex ratio rose further, to 663 boys for every 100 girls.

"Among some Indian immigrants, the practice of induced abortions is associated with subsequently having a boy, especially at the third birth and among women with two previous girls," says Dr Marcelo Urquia, St. Michael's Hospital, Toronto, Ontario.

Birth ratios fell within the natural range for Canadian-born women and immigrant women from most other countries.

Previous studies of male-female birth ratios have relied on indirect evidence, and most have not considered the sex of the existing siblings or the number of abortions as factors.

In a related commentary, Drs Abdool Yasseen and Thierry Lacaze-Masmonteil, from the Children's Hospital of Eastern Ontario, Ottawa, Ontario, write, "The real question is not whether the practice of prenatal sex selection exists -- it is clear from the results of this study and numerous others that it does -- but why this practice persists, particularly in a Canadian society that espouses sex equality."

One problem is that Canada has no law on abortion at all. Professional associations frown on the use of ultrasound to detect the sex of a foetus and sex-selective abortions, but they have no power to stop them.

Amrita Mishra, project director of the Indo-Canadian Women’s Association in Edmonton, told the Globe and Mail that “existing legal loopholes allow anyone to use abortion for infant sex selection. I see Canada as enabling as such practices. And I refuse to have this turn into an Indian issue that’s been imported like vegetables or fruit into Canada.”

She would like to see a law against sex-selective abortion. “When one says Indians or Chinese, Koreans or Philippines have brought this problem to a country, we really need to take a good solid look at ourselves and ask ourselves what are the laws in this country that allow this to happen?” she said.




MORE ON THESE TOPICS | Canada, gendercide, India, missing girls

This article is published by Michael Cook and BioEdge 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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‘Genetic sexual attraction’ could become issue for kids of sperm donors


The British press is a fathomless mine of lurid but thought-provoking, strange-but-true explorations of the dark side of the human condition. Last week's revelation was published in a magazine called The New Day -- a passionate incestuous romance between a 51-year-old British woman and her 32-year-old American son.

Kim West was studying in California when she had a child out of wedlock. She gave him up for adoption and turned to England. Nearly 30 years later she learned that her son Ben Ford wanted to contact her. When they met, they immediately felt an overwhelming sexual attraction. Ben ended up abandoning his wife and moving in with his mother. They live together and are considering having children.

Post-adoption romance is a poorly-understood but well-documented phenomenon. In 1980s an American adoption counsellor, Barbara Gonyo, coined the term “genetic sexual attraction”(GSA) for these passionate feelings. Two British psychologists interviewed several people in the grip of GSA who all described “a romantic ‘falling in love’, intense and explosive, sudden and almost irresistible”.

Since incest is not only taboo but illegal in most jurisdictions, people are reluctant to discuss it. However the psychologists estimated that such feeling are present about 50 percent of the time when siblings and parents are reunited. Their article was published 20 years ago in the British Journal of Medical Psychology (later renamed Psychology and Psychotherapy), so it is possible that the number of cases has increased.

In fact, as a sympathetic columnist for The (London) Telegraph pointed out, the use of anonymous sperm donation could cause a huge increase in the prevalence of GSA. Children can contact their biological parents as soon as they turn 18 in the UK, so numbers are bound to grow as “genetic orphans” seek out the parents they have never seen. She concluded that:

 She writes:

Perhaps one of the biggest causes for concern is egg and sperm donation. Over the last few decades, it has never been easier for organisations – and individuals - to dish out large quantities of eggs and sperm to different locations. The last Human Fertilisation & Embryology (HFEA) report shows that sperm donations, especially, have been rising since 2005 – with many coming from the US and Denmark.

This seed sprinkling will essentially mean lots of children go through life without ever knowing their biological father and/ or mother, and other important close relatives, in the time where the desensitisation effect should happen.

Should they never meet with their (unknown) biological family, then they will never put themselves at risk of GSA. But such reunions have become much easier – especially as new rules brought out by the HFEA mean that any child conceived on or after April 2005 can now seek information on their parents when they turn 16 years old. This will inevitably mean more children discovering their biological relatives in adulthood, with the potential for hundreds, if not thousands, of more GSA cases

Legal arguments are already being rolled out. In an article in the journal Criminal Law and Philosophy, an academic at Rutgers School of Law, Vera Bergelson, has argued that the traditional reasons for banning incest are over or under-inclusive, inconsistent or clearly inadequate. For instance, when pressed, opponents of incest argue that children are harmed. But she responds that science does not bear this out:

“ … it is far from clear that inbreeding presents a threat to society. The number of serious genetic disorders associated with inbreeding is quite limited. Moreover, some scientists believe that, in the long run, populations may suffer from the prevention of consanguineous marriages …”

In any case, a higher probability of genetic defects is hardly a reason to ban marriage. If that were the case, society would ban IVF, which has an elevated rate of birth defects. She concludes, as supporters of homosexuality did in the 1970s:

“the true reason behind the long history of the incest laws is the feeling of repulsion and disgust this tabooed practice tends to evoke in the majority of population. However, in the absence of wrongdoing, neither a historic taboo nor the sense of repulsion and disgust legitimizes criminalization of an act.”





This article is published by Michael Cook and BioEdge 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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Sperm donor scandal rocks US


Parents of donor-conceived children are suing a US sperm bank after it was discovered that one of the bank’s donors was a convicted criminal and schizophrenic.

Georgia-based Xytex Corp, the company at the centre of the lawsuit, advertised donor 9623 as a dream biological father, boasting a high IQ and impressive professional accomplishments (including being a PhD candidate in neuroscience engineering). After the man’s sperm was used to produce 36 children, one customer who had used the sperm accidentally stumbled across donor 9623’s true identity.

According to the claimants, the man has been diagnosed with schizophrenia, narcissistic personality disorder and grandiose delusions. They also allege the 39-year-old from Georgia spent eight months in jail after a residential burglary in 2005 and graduated with a bachelor’s degree just last year, 20 years after enrolling.

The information “made my heart sink like a lead ball into my stomach,” said Angela Collins, a parent who had used the man’s sperm.

Collins, who is one of the claimants, wants sperm banks to better screen donors, including carrying out medical and criminal background checks. She also hopes to push Xytex to create a medical fund for children affected by Donor 9623, to be used for intervention and treatment should any of them show signs of mental illness at a later date.

In a public statement Xytex has denied any wrongdoing.

“In this case, the donor underwent a standard medical exam and provided extensive personal and health information,” wrote Xytex president Kevin  M. O’Brien. “He reported a good health history and stated in his application that he had no physical or medical impairments. This information was passed on to the couple, who were clearly informed the representations were reported by the donor and were not verified by Xytex.”




MORE ON THESE TOPICS | clinical ethics, donor anonymity, US

This article is published by Xavier Symons and BioEdge 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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Treatment disagreement gets ugly in Western Australia


The parents of a six-year-old West Australian boy have spoken of their distress after a Perth hospital obtained a court order to force chemotherapy on the child.

Angela Kiszko and Colin Strachan – the parents of Oshin Kiszko, who has been diagnosed with advanced brain cancer – believe that their son should not have to undergo chemotherapy, as it is not worth the suffering and risks, which can include long-term intellectual impairment. Instead they asked for palliative care.

Yet earlier this month, a West Australian Family Court ratified the decision of a Princess Margaret Hospital (PMH) ethics committee to enforce the treatment, despite Kiszko and Strachan’s refusal.

Doctors said that the child’s brain tumour was on the cusp of an "irretrievable progression", and that the PMH peadiatric oncology team needed to commence treatment immediately.

The ethics committee, though initially divided, decided that the 'burdens and benefits equation' clearly fell in favour of active treatment.
Ms Kiszko had requested that doctors take a palliative option with reduced chemotherapy, but this was rejected by doctors at PMH.

Australian Medical Association WA president Michael Gannon has defended the hospital, saying the oncology unit at PMH was an outstanding one in a global context and he said no doctor would move to see such a treatment enforced without significant consultation.

"This is rare, extremely unusual and would weigh heavily on the individual clinicians involved," he told a local radio station. "It is something they would almost certainly discuss with their colleagues."

 




MORE ON THESE TOPICS | Australia, clinical ethics, informed consent

This article is published by Xavier Symons and BioEdge 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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Genetic diagnosis should be a government priority: Savulescu


Julian Savulescu, together with Monash IVF stakeholder Kelton Tremellen, has called on the Australian government to subsidise preimplantation genetic diagnosis, arguing that genetic screening is in the interests both of children and of future generations. In an article that forms part of The Conversation’s series on ‘big ideas’ for the 2016 Australian federal election,  Savulescu and Tremellen list what they see as strong reasons to fund genetic testing for prospective IVF parents. 

Savulescu and Tremellen suggest that, insofar as we “count the value of the life of a child produced by IVF as a benefit”, it is very cost effective to screen children for congenital conditions like cystic fibrosis.

“While the Australian government does pick up the tab for the majority of IVF costs, it pays absolutely nothing towards the costs of genetic testing, which are borne by the prospective parents. This appears to be a strange position when one considers the costs associated with care for a child born with cystic fibrosis, estimated to be over A$30,000 a year.”

They also suggest that there are ‘impersonal reasons’ that count in favour of government subsidies for prenatal genetic diagnosis:

“…we also feel intuitively that a world without cystic fibrosis is a better world… Sometimes these reasons are called “impersonal reasons”, reasons that are unconnected to harm and benefit to persons… The implication of this for IVF and genetic selection is that we have some direct impersonal reasons to support these.” 

Savulescu and Tremellen conclude their article with suggestion that it would be in the government’s interest to support genetic testing for “non-disease traits”:

“These arguments suggest much more funding should be put into IVF and genetic selection to avoid serious disease. But they also extend to other non-disease traits. It is better if people have talents and gifts, are happy, co-operative, empathetic, altruistic and so on… Genetic selection should be supported to have children who will have better lives, not merely healthier lives. It ought to be a priority.”

The argument advanced in the article reflects Savulescu’s general bioethical theory of procreative beneficence – the view that parents have an ethical duty wherever possible to bring into existence healthy children.





This article is published by Xavier Symons and BioEdge 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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Should students learn about declining fertility?


Is this a straw in the wind? After decades of educating students in the fine art of suppressing their fertility, the British Fertility Society sponsored a seminar this week about the controversial notion of teaching high school students about preserving it.

This was a concern of the late Lisa Jardine, the former head of the Human Fertilisation & Embryology Authority, the UK’s fertility watchdog. She once said:

If one in seven of us in the modern world is going to have problems with infertility then instead of all the teaching at school being about how to stop getting pregnant someone had better start teaching about how you do get pregnant, because there are going to be a lot of extremely disappointed people out there.

At the moment, British schools are obliged to refer to Sex and Relationship Education Guidance, a Government document which has not been updated since its publication in 2000.

The only reference to fertility in the 2000 guidance is to “some medical uses of hormones, including the control and promotion of fertility”. The organisers of the seminar pointed out that the topic of fertility decline with age is “Conspicuous by its absence”.  

Mentioning the topic of declining fertility is surprisingly controversial -- partly because of political arguments over sex education in schools. But there are also different ideas about whether a policy priority of avoiding teenage pregnancy clashes with teaching students how to preserve their fertility.

As well, some experts feel that discussion of fertility might add to pressure on women to have children early in life. It might also serve the commercial interests of IVF clinics who are beginning to market egg freezing as a way to have a successful career and to postpone childbearing.

Adam Balen, chairman of the British Fertility Society, told the Daily Mail that sex-ed classes should include information on the best age to have a child. Many girls, he said, are unaware how quickly their fertility declines with age and they are dazzled by the babies of ageing celebrities who neglect to mention that they used IVF, donor eggs or surrogacy.

Norman Wells, of the Family Education Trust, told the newspaper: “So much sex education has placed such a strong emphasis on how to avoid pregnancy, that it has frequently presented a very negative image of childbearing … and some, to their cost, are leaving it too late.”




MORE ON THESE TOPICS | fertility, fertility education, IVF, UK

This article is published by Michael Cook and BioEdge 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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Former Australian PM Bob Hawke backs euthanasia


Former Australian Prime Minister Bob Hawke   

Former Australian Prime Minister Bob Hawke has emerged as a strong supporter of legalised euthanasia. In an interview on ABC Radio, he said that some people were dying in terrible pain and should be able to schedule their own deaths. In his judgement, it is an “inarguable case”:

“In my judgement, there's no moral or ethical grounds for the absurdity of having a position where a person is in terrible pain and for some quasi-religious or moral reason you're going to make them suffer and suffer and suffer.”

For Hawke, a Rhodes Scholar who became the longest-serving Labor PM since Federation in 1901, the prospect of “losing his marbles” is unbearable, although he says that he has always been in favour of euthanasia. He even backs euthanasia for teenagers. "A 15-year-old can be in a position where he's got very limited life expectancy and the only certainty is excruciating pain," he said. "The principle is generally valid, I believe."

Hawke claims that many politicians are too cowardly to speak in favour “assisted dying” even though some opinion polls show 60 to 70% of Australian are in favour of it.

Paul Russell, a well-known Australian anti-euthanasia campaigner, observed that “losing my marbles” is a kind of vilification of patients with dementia. “He is saying, in a shorthand way, that he doesn't want to be like them. It is a pejorative; an unwelcome slight that reinforces discrimination.”




MORE ON THESE TOPICS | assisted dying, Australia, euthanasia

This article is published by Michael Cook and BioEdge 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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Racism and bioethics


A new edition of the American Journal of Bioethics considers the role that bioethics can play in addressing racism in healthcare, education, and general society.

Contributors cover a broad range of topics, including justice and racism, the treatment of undocumented immigrants in the healthcare and education systems, ethics education in medical schools, and ‘intersectional’ approaches to addressing racial inequalities.

Loyola University bioethicist Kayhan Parsi argues in his guest editorial that bioethics should have as a predominant concern the elimination of structural racism in medical schools, healthcare organisations, and, indeed, the discipline itself:

“If we want to eliminate structural racism, we have to change the structures… leadership in bioethics should strive to be more diverse and inclusive. The American Society for Bioethics and Humanities has never had a president of color…we need to cultivate more leadership opportunities for people of color in the field of bioethics.”

In a commentary, Abbas Rattani notes that “The bioethics discipline lacks a firm presence in HBMSs [historically black medical schools]” in the US. Rattani argues for the establishment of bioethics programs in all of these schools.

Melissa Weddle of Oregon Health and Science University argues that bioethicists have a limited role and scope for addressing institutional injustice, and that a concerted social effort is needed to adequately deal with entrenched racism:

“Addressing the racial injustices of our society is a mission that belongs to educators, journalists, policymakers, legal professionals, spiritual leaders, legislators, funders of research, law enforcement workers, hospital administrators, public health professionals, and all who participate in provision of medical care. Racism permeates every level of our society, and significant societal change will require sustained efforts within many disciplines by those with diverse experience and training.”




MORE ON THESE TOPICS | bioethics, bioethics discourse, racism

This article is published by Xavier Symons and BioEdge 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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No monkey business: pig to baboon organ transplants increasingly successful


A team of researchers in the US have performed a series of remarkably successful interspecies organ transplants. Specifically, they transplanted genetically modified pigs hearts into baboons and kept the ‘graft organs’ alive for a median of 300 days.

The researchers, led by Muhammad M. Mohiuddin of the National Heart, Lung and Blood Institute (NHLBI) in Maryland, published a paper detailing their findings in Nature Communications this week.

Mohiuddin and his colleagues transplanted genetically modified ‘human-like’ pigs hearts into the baboons while administering a series of special drugs to prevent rejection. Importantly, the researchers didn’t remove the baboon’s own heart, but rather connected an additional heart to the circulatory system of the animals, allowing their own hearts to beat as normal.

With their targeted interventions, the researchers managed to keep the hearts (and the baboons) healthy for many months, and one survived for 945 days.

The researchers say that new-targeted interventions, such as the blocking of communication between immune cells and the administering of blood thinners, allowed for greatly increased organ survival.

"These hearts could have gone even longer, but we wanted to test to see if the animals had developed some kind of tolerance to the organs," Mohiuddin told science magazine The Verge.

Several research teams around the world are conducting similar research into xenotransplantation – the transplantation of tissue or organs from one species to another – in a bid to address the ubiquitous problem of organ shortages. 





This article is published by Xavier Symons and BioEdge 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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More changes to donor law considered in NSW


The State government New South Wales is considering tightening rules regulating embryo donation after a woman who received donor eggs allegedly lied to doctors and the embryo donor about the fate of her pregnancy.  

The donor recipient, who has remained unidentified by the media, received embryos from Mrs. Natalie Parker in late 2014. The woman and her partner agreed to stay in contact with Parker once the baby was born. Yet late last year the donor recepient contacted Parker over the phone saying that implantation had failed.

Parker was suspicious of the woman, and tracked her down via Facebook. She discovered that the woman had indeed given birth to a child, and the child looked strikingly like Parker’s own children. Parker feels certain that that the child is hers, though IVF Australia are still investigating the matter. "I feel taken advantage of, and incredibly sad”, Parker said.

NSW health minister Jillian Skinner said that authorities are considering whether they should further strengthen donor law in the state. "A case made public [on Sunday] raises issues which the NSW Ministry of Health will look into to determine if any further strengthening is required," Ms Skinner said. Late last month the State Government considered new legislation that will give all donor conceived children the opportunity to access limited identifying information about their fathers. The proposed bill was narrowly defeated. 




MORE ON THESE TOPICS | Australia, donor anonymity, embryo donation, law

This article is published by Xavier Symons and BioEdge 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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Absolute morality garners trust, says new study


In an innovative empirical study, researchers from Oxford and Cornell universities have found that people who hold to moral absolutes in certain ethical dilemmas are more trusted among their peers than those who engage in situational analyses. 

Jim A.C. Everett, Oxford PhD student and Fulbright Scholar at Harvard University, worked with Molly Crockett from Oxford and David Pizarro from Cornell University to test whether our default reliance on moral rules has an evolutionary basis. 

The researchers asked participants to consider several variations of moral dilemmas where one must decide whether or not to sacrifice an innocent person in order to save the lives of many others. 

They then asked each participant a question about the others who took place in the study: did they prefer as social partners those who took a rule-based approach, or those who made cost/benefit moral judgements.

“Across 9 experiments, with more than 2,400 participants, we found that people who took an absolute approach to the dilemmas (refusing to kill an innocent person, even when this maximized the greater good) were seen as more trustworthy than those who advocated a more flexible, consequentialist approach”, said senior author Dr. Molly Crockett.

When asked to entrust another person with a sum of money, participants handed over more money, and were more confident of getting it back, when dealing with someone who refused to sacrifice one to save many, the researchers found.

However, simply deciding whether or not to sacrifice an innocent person was not the only thing that mattered: how the choice was made was crucial. Someone who had decided to sacrifice one life to save five but had found that decision difficult was more trusted than someone who had found the decision easy.

The scenarios used by the researchers included the famous Trolley Problem, as well as a thought experiment known as ‘the soldier’s dilemma’.




MORE ON THESE TOPICS | ethics, moral psychology, trust, utilitarianism

This article is published by Xavier Symons and BioEdge 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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Testing anti-paedophilia drugs


How do you run an ethical randomised trial to stop paedophilia? This is the question that hovers over research into drugs which are intended to stop unwanted sexual impulses.

Swedish doctors at the Karolinska Institute are investigating the effectiveness of a prostate cancer drug called Firmagon, which blocks the production of testosterone in the testes. It is effectively a form of chemical castration.

Other drugs are already in use, but there is very little hard evidence of how well they work. One of the reasons for this is the legal and ethical issues surrounding paedophilia. Doctors are supposed to report patients if they discover that they have committed a criminal offence like downloading child pornography, so men are understandably reluctant to volunteer for trials. The ethics of giving some patients who are at risk of offending a placebo are also murky. One of the goals of the study is to clarify the ethics of the methodology, in view of the social importance of the topic.

Swedish regulators have approved a trial for Firmagon. Half of the participants will receive a placebo and the other half will receive the drug. They will be tested over three months for three markers of risk: high sexual arousal, self-regulation, and empathy. They hope to recruit 60 volunteers through Preventell, a Swedish website for men who are troubled by unwanted sexual impulses.  

A novel feature of the trial is that the Swedish scientists are raising money through a UK website for crowd-funding science, Walacea. (See promotional video above.) The principal investigator, Dr Christoffer Rahm, says he does not want to rely upon drug company funding. He hopes to raise  £38,000 ($53,000).

The researchers’ broader goal is achieving an understanding of the genetic, neurological, and hormonal markers of paedophilic behaviour. Dr Rahm says: "It's important we have evidence-based treatment. We need to shift the focus away from what to do when the damage is already done on to preventing the sexual abuse happening in the first place."





This article is published by Michael Cook and BioEdge 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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Can we slim down the welfare state without eugenics?


The restless rent-a-crowd of British university protesters has a new enemy: Adam Perkins, a lecturer in the neuroscience of personality at King’s College London, who is accused of being a eugenicist.

Dr Perkins published a book called The Welfare Trait in December which almost settled quietly into the obscurity of dusty academic controversy. However, someone discovered what a radical threat it posed to the welfare state and marshalled the troops. In February he had to cancel a talk at the London School of Economics because of threats to disrupt it. He has been reviled on a minor Twitter storm with tweets like “He's a bitter little man with a huge chip on his shoulder, here's hoping he continues to stay out of future gene pools.”

His offence? Espousing Malthusian ideas as a solution to the ailments of the welfare state in the UK.

Perkins’s central argument is that “the welfare state increases the number of children at risk of developing personality profiles that make them less likely to get a job … Individuals with aggressive, rule-breaking and antisocial personality characteristics are over-represented among welfare claimants.”

After crunching the numbers he claims that women on welfare have more children, leading to ever-increasing generations of people with “employment-resistant personalities”.

However, Perkins is an economist and he notes that people on welfare still act rationally. If welfare decreases, they respond with lower fertility. Studies have shown that “ claimants used less contraception when there were increases in the amount of benefits available and the number of children born to welfare claimants rose by 1% for every 3% rise in benefit generosity.”

Critics, especially disability groups, have accused Perkins of being a eugenicist who wants to “breed out” welfare claimants. He denies this, saying that offering economic incentives to decrease the number of welfare-dependent children is not the same as manipulating genetics. He summarises his policy as follows:

“ … instead of getting bogged down in arguments over whether the benefit cap should be £26,000 or £25,500 per year it is better to set the cap at whatever level causes the number of children born to welfare claimants to start falling. Once a downward trend has begun, then the benefit cap can be tweaked to continue that trend down to whatever level of reproduction is judged by the government to be appropriate for disadvantaged households. In this way, year by year, the number of children who suffer personality damage due to being born into disadvantaged households will gradually be reduced.”

Perkins finds some support for his views in biologist Richard Dawkins who wrote in The Selfish Gene that contraception was a necessary element of the welfare state: “otherwise the end result will be misery even greater than that which obtains in nature”. 




MORE ON THESE TOPICS | eugenics, nudging, welfare state

This article is published by Michael Cook and BioEdge 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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The very rich are different from you and me


Olga Mirimskaya  

“Let me tell you about the very rich,” wrote American novelist F. Scott Fitzgerald. “They are different from you and me. They possess and enjoy early, and it does something to them, makes them soft, where we are hard, cynical where we are trustful, in a way that, unless you were born rich, it is very difficult to understand.”

This is an educational tale about how much Russian oligarchs love their IVF children. Its lesson is that IVF creates bad problems which oodles of money make worse.

Olga Mirimskaya and Nikolai Smirnov were a happy newly-married couple in Moscow. But not a typical couple. Olga had recently divorced one of Russia’s richest men in a London court, to the delight of Britain's lurid tabloids. She is the chair of Russki Produkt, Russia’s largest domestic producer of grocery goods. Nikolai, a Stanford graduate, is the chair of Zolotaya Korona, a Russian answer to PayPal.

According to Pravda, “Like many other couples these days Olga and Nikolai decided to take advantage of modern medicine and engaged the services of an in vitro fertilization (IVF) clinic.”

Olga, who already had three children from her first marriage, was 50 and unable to conceive. The couple engaged a surrogate mother from Crimea, Svetlana Bezpyataya, a woman with one child of her own and an unemployed husband. She had been a surrogate several times before. The pregnancy went well and the baby was born on May 15 last year, but the marriage of the two tycoons did not. They split up and everything went south -- including Svetlana, who fled to Cyprus with Sofia, her husband and her other daughter. Nikolai apparently financed their stay there.

Svetlana ignored the contract and refused to hand over baby Sofia to Olga. On the baby's birth certificate Svetlana and her husband Andrey are listed as the biological parents. It is possible that he knew nothing about his wife's surrogacy contract and thought that the child was his. A legal tussle ensued. Things got very messy.

Pravda depicts Svetlana as a criminal. From Moscow she was charged with numerous counts of fraud and human trafficking and was placed on Interpol’s “most wanted” list. Olga’s lawyers beavered away. In late March the Supreme Court of Russia declared her the legitimate mother of Sofia (although biologically she is her grandmother).

Other media, less understanding of the inner suffering of oligarchs, paint a picture of the best justice money can buy. Under Russian law, the birth mother of a child is deemed the mother, regardless of a purported surrogacy contract. "This is the ridiculous legal practice of modern Russia, when a woman who was not even a donor of biological material, whose egg has not been used, all of a sudden the trial court declared her the mother,” said children's ombudsman Pavel Astakhov.

A fair bit of confusion surrounded the surrogacy contract, which apparently required some sort of endorsement from a doctor. His testimony would have been helpful during the court hearing, which ran from September 16 to 21. Sadly, on September 8, like other inconvenient persons of interest in modern Russia, he committed suicide in his office under mysterious circumstances. Of Nikolai the media has had nothing to say. 

And baby Sofia? She is still on the run with her birth mother. 

NB -- The exact facts about this story are difficult to obtain on the internet and articles in local newspapers are tainted by prejudice and misinformation. Comments would be welcome. 




MORE ON THESE TOPICS | IVF, Russia, surrogacy

This article is published by Michael Cook and BioEdge 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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Ban on embryo research survives challenge in Italy


Italy’s Constitutional Court has reaffirmed the legitimacy of a ban on human embryo research. In a decision late last month the Court declared that Article 13 of Law 40, a 2004 law on assisted reproduction, was constitutional. 

The legislation was challenged by a couple who had created several embryos in an IVF clinic. They requested that the defective ones be made available for genetic research, although this obviously clashed with Law 40.

Geneticist Bruno Dallapiccola, of the Bambino Gesù Children’s Hospital, was scathing in his comments to the L’Avvenire newspaper:

“The embryo is not simply a mass of cells, but something more which deserves to be respected. The Constitutional Court’s ruling, by maintaining the ban on using frozen embryos for research, confirms this principle."

He also expressed scepticism about the usefulness of human embryonic stem cells, in the wake of recent developments in stem cell research:

"We have not achieved the results that many hoped. The idea that research on embryonic stem is helpful in treating serious diseases today is, in my opinion, only a slogan that is not reflected in reality. While adult stem cells have led to tangible results which are transferable to clinical work, and while induced pluripotent cells have led to the creation of experimental models of diseases, embryonic stem cells have led nowhere.”  




MORE ON THESE TOPICS | embryo research, Italy

This article is published by Michael Cook and BioEdge 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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The company they keep


“Europe’s superlab”, a £700 million research institute, the Francis Crick Institute, opens this year. It is Europe’s largest biomedical research centre, a partnership between six of the UK’s best known scientific and academic organisations – the government funded Medical Research Council (MRC), Cancer Research UK (CRUK), the Wellcome Trust, UCL (University College London), Imperial College London and King’s College London.

It has been named after Sir Francis Crick, who shared the 1962 Nobel Prize for Physiology and Medicine with James Watson and Maurice Wilkins.

But in times when universities are being battered for naming building and institutes after colonialists and racists, why has the UK’s science establishment named its “altar to biomedical science” (in the words of The Guardian) after an outspoken eugenicist?

This is a question posed by Philippa Taylor in her blog on Christian Medical Comment.

Crick was so convinced of the power of genetics that he even questioned the equality of “Negros”. In February 1971 he wrote in a letter to members of the American National Academy of Sciences that:

“more than half the difference between the average I.Q. of American whites and Negroes is due to genetic reasons, and will not be eliminated by any foreseeable change in the environment. Moreover I think the social consequences of this are likely to be rather serious unless steps are taken to recognize the situation…”

In 1970 he told Dr Bernard Davis, of Harvard Medical School, that people who were “poorly genetically endowed” should be sterilised:

“…My other suggestion is in an attempt to solve the problem of irresponsible people and especially those who are poorly endowed genetically having large numbers of unnecessary children. Because of their irresponsibility, it seems to me that for them, sterilization is the only answer and I would do this by bribery. It would probably pay society to offer such individuals something like £l,000 down and a pension of £5 a week over the age of 60. As you probably know, the bribe in India is a transistor radio and apparently there are plenty of takers.”

The name is doubly unfortunate, she suggests, because the focus of the new Institute is precisely developing the biomedical tools which will make do-it-yourself eugenics possible. Some people might forgiven for being sceptical of oaths taken never to engage in eugenics.




MORE ON THESE TOPICS | eugenics, Francis Crick, UK

This article is published by Michael Cook and BioEdge 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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Playing the bioethical Trump card


What do bioethicists think of Donald Trump?

Probably not much. Trump views on bioethical issues are either ill-defined or extreme: He flip-flopped on abortion this week, appearing to change position three times in the space of a day. And after the Brussell’s terrorist attacks he called for a liberalisation of US laws on torture of terrorist suspects.

Yet there’s perhaps more to the story than these off-the-cuff remarks. Leading US bioethicist and former presidential advisor Johnathan D. Moreno believes Trump implicitly represents a certain attractive moral conservativism; at least, a conservativism attractive to Republican voters.

In a recent article in the Huffington Post, Moreno discussed the evolution  of GOP rhetoric on bioethics in the past ten years. According to Moreno, many Trump supporters are protest voters reacting to the weakened social conservativism of the party. 

The GOP establishment made a decision following the 2012 elections to soft-pedal controversial social issues. As Moreno recounts,

“…after President Obama’s reelection the post-2012 Republican ‘autopsy’ report specified that ‘on messaging, we must change our tone - especially on certain social issues that are turning off young voters.’”

Moreno believes this turn away from social issues –including cloning and stem research – damaged the party’s prospects and alienated their conservative voter base. Trump, Moreno believes, represents a reaction to the soft approach to social and bioethical issues.

“both [Ted] Cruz’s appeal and Trump’s rise demonstrate that many conservative voters want their politicians to be seriously committed to moral values.

“What all this will finally mean for the party or for the American conservative movement no one can tell, but in the aftermath of the Trump cycle conservative elites would do well to revisit the role of bioethics in appealing to their most sympathetic voters.”

Interestingly, Princeton Professor Robert George, a member of George W. Bush’s President’s Council on Bioethics, has publicly chastised Trump for his “oafishness” and “demagoguery”. George co-signed a letter published in The National Review last month that labelled Trump “manifestly unfit to be president of the United States.” 




MORE ON THESE TOPICS | abortion, politics, politics and bioethics, US

This article is published by Xavier Symons and BioEdge 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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Everybody’s a winner when euthanasia combines with organ donation, say doctors


Several Dutch and Belgian doctors have proposed legal reforms to increase the popularity of combining euthanasia and organ donation in the Netherlands and Belgium.

Writing in the Journal of Medical Ethics, they report valuable unpublished information about the prevalence of the procedure. So far, it has been performed only about 40 times in the two countries. However, there is “a persisting discrepancy between the number of organ donors and the number of patients on the waiting lists for transplantation” – which euthanasia patients could help to balance.

The authors stress that euthanasia is not a cure-all for the organ shortage. Most euthanasia patients suffer from cancer, which is a contraindication for organ transplantation. However, 25 to 30% of them do not, so there is obviously a real possibility of expanding the supply.

Furthermore, the authors say, public perception of this formerly abhorrent practice is increasingly positive:

“transplant coordinators in Belgium and the Netherlands notice a contemporary trend towards an increasing willingness and motivation to undergo euthanasia and to subsequently donate organs as well, supported by the increasing number of publications in popular media on this topic.”

Ethically, the procedure is basically uncontroversial as long as the patient is not pressured to donate, they contend.

“In the context of organ donation after euthanasia, the right of self-determination is a paramount ethical and legal aspect. It is the patient's wish and right to die in a dignified way, and likewise his wish to donate his organs is expressed. Organ donation after euthanasia enables those who do not wish to remain alive to prolong the lives of those who do, and also—compared with ‘classical’ donation after circulatory death—allows many more people to fulfil their wish to donate organs after death.”

However, there are some legal hitches in both countries. In the Netherlands, unlike Belgium, euthanasia is regarded as an “unnatural death” which has to be reported to the public prosecutor. This could delay donations. If the law were changed to allow the cause of death to be reported as the underlying condition, the procedure would be more expeditious. And “In Belgium, the current policy of determination of death by three independent physicians could be abandoned, facilitating a more lean procedure with only one physician.”

Public perceptions need to be managed as well. At the moment, it is necessary to maintain a strict separation between the request for euthanasia and the need for the organ. Partly this is needed to ensure that the donor is not being pressured. But the public also needs to have confidence that physicians will give objective advice. 

Finally, there is the tradition of the dead donor rule “that donation should not cause or hasten death”. The authors imply that this could be scrapped for euthanasia volunteers:

“Since a patient undergoing euthanasia has chosen to die, it is worth arguing that the no-touch time (depending on the protocol) could be skipped, limiting the warm ischaemia time and contributing to the quality of the transplanted organs. It is even possible to extend this argument to a ‘heart-beating organ donation euthanasia’ where a patient is sedated, after which his organs are being removed, causing death.”

The article’s proposals were not received with great enthusiasm in the UK where there is a simmering debate on assisted dying. Tory MP Fiona Bruce told the Daily Mail: “The paper confirms the worst fears expressed by Parliament when the House of Commons conclusively voted to stop the legalisation of assisted suicide in this country. The possibility of euthanasia achieved through live organ donation, such as by removing a patient's beating heart, as posited in this paper is shocking and chilling.”

And Lord Carlile of Berriew, a Liberal Democrat peer who is a leading lawyer, said: “I have extreme concerns about the ghoulish nature of the combined euthanasia and organ donation systems in the Netherlands and Belgium. Both can result in unbearable and irresistible pressure on an individual to die, and on a doctor to encourage death.”




MORE ON THESE TOPICS | Belgium, euthanasia, Netherlands, organ donation

This article is published by Michael Cook and BioEdge 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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That euthanasia stuff… does anyone remember what we decided?


Catherine Fonck (l) and Health Minister Maggie De Block in Parliament  

Despite – or perhaps because of – scathing criticism of their 2002 law by foreigners, Belgians approach legalised euthanasia with a certain nonchalance. “We’re in charge. We know what we’re doing. Life’s good. So get … um … lost!” seems to sum up the official approach.

However, a question posed by a member of Parliament, Dr Catherine Fonck, early last month, must have rattled that complacency.

Dr Fonck, a renal physician who was a minister in the government of Elio di Rupo, queried Health Minister Maggie De Block about why the full text of the country’s euthanasia law has never been published.

It turns out that the original text was amended in 2005 with the intention of controlling the lethal drugs used in euthanasia cases better. Both chambers of Parliament agreed that extensive information about the drugs and the pharmacist should be included in the official report submitted by the physician. The amendment received royal assent. It was therefore the law of Kingdom of Belgium.

But it was never published in the official gazette of December 13, 2005 -– so no one knew about it. Corrections were published in the gazette of September 25, 2006, but the amendment did not appear there, either. Dr Fonck raised the unsettling possibility that promulgation of the amendments had been sabotaged by an unknown individual.

“I find this completely surreal,” Fonck told the Minister. “Could you enlighten me on why this surreal situation, namely that legislation passed in both chambers, in committee and in a Plenary session of the House and Senate was - twice - not included in the Moniteur Belge [the official gazette]?” 

The terseness of the Minister’s reply suggests that she did not welcome the liberation of this fragment of law from the dungeons of oblivion. Understandable, perhaps, for it is not as though euthanasia is something important, like terrorism legislation, where a mistake means that innocent people die unnecessarily.

But she patiently ate her full meal of humble pie. “Ten years later, no one can explain what happened,” she told Dr Fonck. She agreed to correct the gazette.

Thanks to the bulletin of the European Institute of Bioethics




MORE ON THESE TOPICS | Belgium, euthanasia

This article is published by Michael Cook and BioEdge 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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Is disability a disadvantage or a mere difference?


 

Philosophical reflection on disability has a history, yet it is only in the past fifteen years that the contemporary Anglophone philosophical world has given it much attention. 

The renewed interest in the topic has culminated in a number of significant papers and books, among which is the 2015 book The Minority Body, by University of Virginia philosopher Elizabeth Barnes. Barnes argues for a social constructivist conception of disability. This means that the disadvantages that accompany disability are the result of social injustice, rather than physiological or psychological disadavantages.

Barnes suggests that, were the social injustices of the modern world to be remedied, the perceived disadavantages of disability would disappear. As she wrote in a 2014 essay, the overall disadvantage associated with disability would be removed if society were “fully accommodating of disabled people.”

Yet Barnes’s view is highly controversial, and has garnered widespread criticism. In an article published in the latest edition of the Journal Ethics, Guy Kahane and Julian Savulescu argue against Barnes’s “mere difference view”. According to Kahane and Savulescu, disabilities are objectively disadvantageous to an individual (they label their position the “detrimental difference view”). Kahane and Savulescu present a series of cases that seem to show that it would be impermissible to cause disability in an individual. And yet, it would seem that the mere difference view would permit  causing disability. Kahane and Savulescu argue that Barnes fails to adequately respond to this objection. For the two authors, this is sufficient reason to reject Barnes “mere difference” position.

Elsewhere, in a paper that appeared earlier this year as part of a Journal of Medical Ethics symposium on philosophy and disability, Stockholm University ethicist Greg Bognar provides an alternative critique of Barnes’s thesis.

Like Kahane and Savulescu, Bognar believes that disability is “no mere difference”. Bognar considers a series of arguments made by disability advocates in favor of the mere difference view. Some of the views he critiques include claim that disability is sufficiently similar to other mere differences that aren’t disadvantages, like race or gender; the claim that disability helps other people to cultivate other talents and aptitudes; and the view that disability is valuable because it is valued by those who are disabled.

Bognar suggests that none of these arguments sufficiently demonstrate that disability is not physiologically or psychologically disadvantageous for people. If he is right, then disability as such is detrimental and not just a trivial “difference”. Despite their arguments, Kahane, Savuesculu and Bognar go to some length to distinguish their criticisms from prejudice against disabled individuals. It is not a question of discrimination against a person, but rather a consideration of the moral/medical status of a condition. 




MORE ON THESE TOPICS | disability, discrimination, justice

This article is published by Xavier Symons and BioEdge 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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Are minors capable of informed consent?


In an article recently published (online-first) in the Journal of Medical Ethics, two UK-based doctors call for a sweeping review of adolescent consent protocols in British hospitals.

According to Dr Joe Brierley and Dr Victor Larcher of Great Ormond Street Hospital for Children, there is a disconnect between the complex case law on adolescent consent to treatment and the actual practice of considering the wishes of a minor.

“…Apparent distinctions between competence and capacity, consent and refusal may be difficult for clinicians to comprehend in their daily practice…The apparent divergence between the articulation of the common law and the daily experience of those providing healthcare to young people is troubling.”

Brierley and Larcher contrast a 2014 case that came before the High Court – An NHS Foundation Trust Hospital v P – with a famous case on adolescent consent from 1985 – Gillick v West Norfolk and Wisbech Area Health. In the former the Court ruled that a depressed yet certifiably capable 17-year-old could not refuse life-saving treatment deemed to be in her “best interest”.  This contrasts with Gillick, where a 16-year-old minor was deemed capable of consenting to the administering of contraceptives by doctors, even without parental consent.

Brierley and Larcher suggest there is a certain inconsistency in the way the law allows adults to make apparently irrational treatment decisions, yet limits what would appear to be more rational decisions by children:

“In adult medicine, sufficient importance is attached to the duty to respect the wishes of competent adults, even if they are held irrationally and run counter to an objective view of their welfare, that those choices will be honoured. Thus, an adult in P’s circumstances could have a refusal of rescue treatment honoured even if the consequences were an unpleasant death from liver failure. But unlike adults, in whom competence is presumed, children have to demonstrate capacity and achieve higher levels of competency than those required for adults. However, appeals to principles of fairness, justice and respect for persons would lead to the conclusion that young person who is competent to make a choice, whether voluntary informed consent or refusal, should have their choice honoured.”

The authors reference a highly influential 2003 paper by University of Manchester bioethicist John Harris, where Harris argues vigorously in favour of respect for adolescent autonomy. 




MORE ON THESE TOPICS | consent, informed consent, law, UK

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Doing the right thing by transgender kids is not easy


A US$5.7 million study of the long-term outcomes of medical treatment for transgender youth begins recruiting in May. But knotty ethical questions remain unanswered.

The study will be located at four academic medical centres with dedicated transgender youth clinics and will include 280 young people with gender dysphoria in two age groups.

Younger children in early puberty will receive hormone blockers, called GnRH agonists, to suspend the process of puberty - preventing the development of undesired secondary sex characteristics.

Older adolescents will begin use of masculinizing or feminizing cross-sex hormones that allow them to go through the “right” puberty - consistent with their gender of identification.

Feelings about the ethics of gender dysphoria run high, although little is really known about the condition. “People are making declarations of knowledge that are their belief systems, that aren’t also backed up by empirical research,” Jack Drescher, a psychiatrist at the William Alanson White Institute in New York City, told Nature. In this case, a number of ethicists regard hormone treatment itself as unethical, while those directing the study assume that it is.

Some studies say that 80% of children under with gender dysphoria abandon the idea by the time they enter puberty. However, it appears that children who identify as transgender in adolescence seldom change. Therefore, denying them the ability to transition is unethical, bioethicist Simona Giordano of the University of Manchester, UK, told Nature. “Not treating adolescents is not being neutral,” she says. “It means exposing children to a lot of harm.”

However controversial Giordano’s view is, even more controversial is how to treat younger children. The number in early childhood who identify as the opposite sex seems to be rising almost exponentially. The trend among doctors is to encourage them to live as if they were the opposite sex, an approach which is called “social transitioning”. Trans activists claim that any other approach is equivalent to the reviled “gay-conversion therapy”.

What Nature’s article did not cover is the ethical complications of treating children with powerful drugs for a condition which is poorly understood. The research project involves give 14-year-olds puberty blockers when the current position of the Endocrine Society is to wait until they are 16. 

“There are people within the transgender community who are pushing to do things even more quickly. And patients are requesting irreversible treatments at younger and younger ages,” says endocrinologist Courtney Finlayson. “We’re walking this line in between. This is the forefront of medicine, and we can’t go too fast.”

Even the lead doctor in the study, Rob Garofalo of Lurie Children’s Hospital, in Chicago, has some misgivings.

“The pushback in my own mind is my Hippocratic oath: ‘Do no harm.’ How can I know that I’m doing no harm in the absence of scientific data to support these interventions? I wish we had generations of outcomes research to fall back on, but right now we don’t. We ask these families questions that they can’t really know the answer to. No one can.”




MORE ON THESE TOPICS | informed consent, transgender children

This article is published by Michael Cook and BioEdge 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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The Netherlands is normalising euthanasia, says Dutch ethicist


A former member of a euthanasia review board in the Netherlands has written a stinging attack on the policy he once formed part of.

Dr Theo de Boer, professor of health care ethics at the Theological University in Kampen and associate professor of ethics at the Protestant Theological University in Groningen, speaks from a unique perspective. Not only was he involved in the adminstration of legalised euthanasia, he is also intimately familiar with arguments put forward by some Christian theologians to justify it.

Writing in the American Protestant magazine Christian Century this week, Dr de Boer says that  from 2005 to 2014, he reviewed nearly 4,000 cases of assisted dying as a member of one of the five Dutch regional committees. He thought it was a “robust and humane system” and defended it at ecumenical gatherings.

However, in 2007, he says that the pace of euthanasia began to accelerate, rising by 15 percent each year. As the numbers soared, the criteria expanded. Even children became eligible. The biggest change was the reason for requesting death. Originally defenders of assisted dying described heart-breaking stories of tormented patients  who just wanted to die peacefully. But this changed. Nowadays, many people simply want to take an early exit from loneliness or bereavement or meaninglessness.

Although some patients still request assisted dying out of fear of ineffective palliative care, an increasing number see euthanasia as the form of a good death after a trajectory of good palliative care. The unbearable suffering that they refer to increasingly consists of meaningless waiting rather than physical suffering. The “burning truck” example no longer applies to most cases. The issue now is autonomy—the patient’s right to a swift death, brought about by a doctor.

Dr de Boer’s words are sobering. They suggest that once euthanasia has become established it becomes a normal treatment.

With overall mortality numbers remaining level, this means that today one in 25 deaths in the Netherlands is the consequence of assisted dying. On top of these voluntary deaths there are about 300 nonvoluntary deaths (where the patient is not judged competent) annually. These are cases of illegal killing, extracted from anonymous surveys among physicians, and therefore almost impossible to prosecute. There are also a number of palliative sedation cases—the estimate is 17,000 cases yearly, or 12 percent of all deaths—some of which may involve shortening the life of a patient considerably. Furthermore, contrary to claims made by many, the Dutch law did not bring down the number of suicides; instead suicides went up by 35 percent over the past six years.

A shift has also taken place in the type of patients who seek assisted dying. Whereas in the first years the vast majority of patients—about 95 percent—were patients with a terminal disease who had their lives ended days or weeks before a natural death was expected, an increasing number of patients now seek assisted dying because of dementia, psychiatric illnesses, and accumulated age-related complaints. Terminal cancer now accounts for fewer than 75 percent of the cases. Many of the remaining 25 percent could have lived for months, years, or even decades.

In some reported cases, the suffering largely consists of being old, lonely, or bereaved. For a considerable number of Dutch citizens, euthanasia is fast becoming the preferred, if not the only acceptable, mode of dying for cancer patients. Although the law treats assisted dying as an exception, public opinion is beginning to interpret it as a right, with a corresponding duty for doctors to become involved in these deaths. A law now in draft form would oblige doctors who refuse to administer euthanasia to refer their patients to a willing colleague.

This is obligatory reading for anyone interested in the debate over euthanasia and assisted suicide.




MORE ON THESE TOPICS | euthanasia, Netherlands

This article is published by Michael Cook and BioEdge 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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LGBT rift over surrogacy?


It’s not just bio-conservatives who are troubled and puzzled by the growth of surrogate motherhood. Writing in the Huffington Post, Keston Ott-Dahl, the lesbian co-mother of a Down syndrome daughter, confesses that there is conflict in the LGBT community as well.

Keston’s partner Andrea was the surrogate mother (with her own eggs) of Delaney Skye.  The commissioning couple, also lesbians, were distraught when the foetus was diagnosed with Down syndrome and asked Andrea to abort her. The Ott-Dahl’s refused and have lived happily ever after – a journey they have chronicled in a blog, a book, and a video (above).

But there are problems. Clearly, with the legalisation of same-sex marriage, more gay and lesbian couples will want children. They need surrogacy. Banning it “would be devastating for the LGBT Community,” writes Keston.

However, many couples want a perfect baby and specify in contracts that defective babies should be aborted or that multiple foetuses should be “reduced”. But this is wrong, she says:

Intended parents need to be mindful ahead of time that there is no such thing as a designer baby, you get what you get — be open-minded (hearted) and grateful.

It is also wrong to force a surrogate mother into aborting a child:

In my opinion, “terminating” should always be at the discretion of the surrogate who is responsible for the growing inside of her. The right to choose doesn’t necessarily mean choosing to terminate. She can choose life as well and no one should attempt to take away her choice regardless of any business arrangement or biological link. It is her body.

Notwithstanding the boilerplate about women’s autonomy, for the Keston the most powerful argument seems to be love for a child obliterates fears of disability:

If intended parents are lucky, they may learn the lesson Delaney taught me; that “imperfect” child may open their hearts and pride to a love they would never have known and their lives may change for the better. I, for one cannot imagine a world without Delaney in it.





This article is published by Michael Cook and BioEdge 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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Nurses have a human right to be good Catholics


Florence Nightingale

In a provocative guest post on the Journal of Medical Ethics blog, a young Cambridge PhD candidate has reiterated his challenge the British medical establishment to change their restrictive stance on conscientious objection.

John Adenitire – who is currently completing a doctorate in law at the University of Cambridge – recently published a lengthy article in the JME criticizing the British Medical Association’s strict limits on conscientious objection. We reported on that recently.

Adenitire this week presented his argument more forcefully, writing that “nurses have a human right to be good Catholics”.

“I don’t think nurses should refuse to provide legal abortions because the Catholic Church tells them not to.  I am not a Catholic and I don’t think anyone should be a Catholic.  But what I think people should or should not be is irrelevant when it comes to the matter of what they have a legal right to be.  Whether I like it or not, nurses have a human right to be good Catholics.”

As Adenitire observes, the BMA restricts conscientious objection to three specific scenarios: “…conscientious objection should ordinarily be limited to those procedures where statute recognises their right (abortion and fertility treatment) and to withdrawing life-prolonging treatment from patients who lack capacity, where other doctors are in a position to take over the care.”

The language of the BMA policy statement would suggest that more remote instances of conscientious objection – such as where a nurse wishes not to take place in administrative or supervisory tasks associated with the provision of abortions – are impermissible. Yet Adenitire suggests that the UK Human Rights Act mandates that hospitals consider a medical professional’s right to object even where the perceived evil is remote. 

“Under the Human Rights Act, individuals have a right to freedom of conscience and religion.  That right may, in appropriate circumstances, entail the right for nurses to object to being involved in administrative and supervisory duties connected with abortion services.”  

Referring to a 2014 Supreme Court judgement, Adenitire comments:

“If you ask me how the Supreme Court avoided having to consider the nurses’ human right to freedom of conscience and religion I couldn’t tell you.  I bet neither could any of the Law Dons at Oxford.”

 





This article is published by Xavier Symons and BioEdge 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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The unsettled status of conscientious objection in the UK


What are the rights of doctors who have a conscientious objection to certain procedures in the United Kingdom? The slightly confusing status quo is the subject of an article in the Journal of Medical Ethics by a Cambridge University academic, John Adenitire.

Dr Adenitire sketches a gradation of hostility towards conscientious objection.

1. At the very top there are Julian Savulescu and others who have argued that conscientious objection is “a door to a Pandora's box of idiosyncratic, bigoted, discriminatory medicine” and has little place in modern medical practice. This is not a widely shared view.

2. Then there is the British Medical Association (BMA), the profession’s “trade union”, which defends conscientious objection only in three specific scenarios. It “should ordinarily be limited to those procedures where statute recognises their right (abortion and fertility treatment) and to withdrawing life-prolonging treatment from patients who lack capacity, where other doctors are in a position to take over the care.”

3. And then there is the General Medical Council (GMC), the profession's regulator in the UK, which allows conscientious objection, albeit with a number of caveats. According to its 2013 policy statement, Personal beliefs and medical practice: “You may choose to opt out of providing a particular procedure because of your personal beliefs and values, as long as this does not result in direct or indirect discrimination against, or harassment of, individual patients or groups of patients. This means you must not refuse to treat a particular patient or group of patients because of your personal beliefs or views about them.‡ And you must not refuse to treat the health consequences of lifestyle choices to which you object because of your beliefs.”

4. Most accommodating of all is a ruling of the European Court of Human Rights (ECtHR) in the British case of Eweida in 2013. It applied Article 9 of the European Convention on Human Rights to several cases of discrimination in the UK. Article 9 guarantees “the right to freedom of thought, conscience and religion”, “subject only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others”.

It is Dr Adenitire’s contention that the Eweida ruling “effectively provides that medical professionals have the right to conscientiously object to providing certain healthcare services well beyond the scope endorsed by the BMA”.

This implies that “Given the unsettled nature of the law on the topic, [National Health Service] employers will have to proceed very cautiously as it will not always be clear whether denying a request will be considered lawful by a court. This entails that NHS bodies may be at risk of expensive legal challenges by medical professionals whose requests have been denied.”

Dr Adenitire therefore believes that the BMA’s policy should be changed to align more closely to the Eweida ruling.

However, the law is still unsettled and Dr Adenitire is not necessarily hostile to proposals for legalised assisted dying which are currently being debated in the UK. In an unpublished paper he goes on to argue that in certain circumstances doctors already have a “conscience-based right to provide assistance in dying”. 




MORE ON THESE TOPICS | conscience, conscientious objection, UK

This article is published by Michael Cook and BioEdge 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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Euthanasia activist posthumously confesses to killing eight people


A now-deceased Canadian assisted dying activist has admitted to breaking Canadian law and killing eight people seeking euthanasia.

John Hofsess, 78, died in an assisted suicide clinic in Switzerland last month. The day after his death the Canadian magazine Toronto Life published a memoir he had written.  

In the article, Hofsess describes his subversive activity in Canada before euthanasia was legalised.

Hofsess set up an underground assisted suicide service that helped eight people to die – including renowned Canadian poet Al Purdy.

“I created an underground assisted death service that offered innovative non-medical ­methods of dying to [Right to Die Society of Canada] members …Following Jack Kevorkian’s example, we didn’t require clients to pay for our services…Between 1999 and 2001, we provided eight members of the Society with assisted deaths.”

Hofsess offers an extended account of the last days of Purdy, and discusses the different means by which he euthanized members of the Society.

Hofsess admitted that what he did was first-degree murder, which carries a mandatory life sentence, or assisted suicide, which carries a maximum 14-year sentence.

"Under current Canadian law, there's no apparent difference between me and killers such as Robert Pickton, Paul Bernardo and Clifford Olson”.

Jan Goddard, a well-known Canadian attorney specializing in elder law, described Hofsess’s story as an example of why euthanasia should be legal.

“It felt to me like it would have been so much better if he and his patients didn’t have to take on all that risk and fear.”

James Downar, a critical care and palliative care physician, was more circumspect:

“I think it’s always hard to condone somebody taking the lives of others, whatever the motivation. That’s a tough one to call. I won’t judge him, but at the same time it’s not the kind of thing I would encourage.” 




MORE ON THESE TOPICS | Canada, euthanasia, law

This article is published by Xavier Symons and BioEdge 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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Unilateral ‘do not resuscitate’ orders: what doctors think


In an article published online this week in the Journal of Medical Ethics, three US-based researchers discuss the results of a survey of neonatologists’ opinions regarding Do Not Attempt Resuscitation (DNAR) orders.

Unilateral DNAR decisions – decisions about resuscitation made by doctors without patent or surrogate consent – are highly controversial. Some see them as usurping patient autonomy.  

The authors of the article are sympathetic to the view that unilateral DNAR orders are in certain circumstances ethically permissible. What’s more, they found that most American pediatricians agree with them.

The authors emailed an anonymous survey to 3000 members of the American Society of Pediatrics Section of Perinatal Medicine, and had a response rate of 16% (490 respondents).

Of those who responded, 77% said it was ethically permissible to issue a unilateral DNAR order where doctors were treating an infant for whom survival was felt impossible. 61% said it was ethically permissible when survival was felt ‘unlikely’.

Interestingly, only 51% said they would enter the order if they found themselves in such a situation. The authors attempted to explain the discrepancy between judgements of ethical permissibility and personal practice.

“The discrepancy…should also be considered in light of the professional climate in American medicine. It has been reported that physicians in the USA commonly initiate and continue treatment until it is virtually certain that the patient will die, taking a ‘waiting for near certainty’ approach to end of life.”

The physicians had a similar attitude toward patients with a poor neurological prognosis. 57% said a unilateral DNAR would be permissible if no curative treatment was available.





This article is published by Xavier Symons and BioEdge 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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Donor anonymity legislation – a moral quagmire


Ethicists and doctors have slammed recently passed legislation in the Australian state of Victoria that will revoke the anonymity of sperm donors.

Under new regulations specified in the The Assisted Reproductive Treatment Amendment Act, children of sperm donors born before 1998 can access the information about their donor, including their name, date of birth or ethnic background, without the donor's consent.

No anonymous donations were permitted after the 1st of January 1998; before then donors could chose to donate on the condition that their information would be withheld from potential children.

Guido Pennings, professor of ethics and bioethics at Ghent University, decried the changes, calling them ‘disrespectful’, ‘unfair’ and ‘immoral’:

“Retrospective legislation on donor anonymity is morally wrong because…it implies that the donor is solely used as a means to serve someone else’s interests…in essence, it is a form of abuse of power by the government…the autonomy of donors and recipients is expressed in their informed consent. Unilateral changes afterwards violate the donors’ and the recipients’ autonomy. It makes their consent null and void.”

Tony Bartone, the Victorian president of the Australian Medical Association, said the new legislation undermines patient confidence in informed consent procedures:

“These patients underwent a medical procedure – donating sperm and eggs – and were given explicit and implicit assurances that their donations would be anonymous”.

Victorian health minister Jill Hennessy said information about identity could make a huge difference in the lives of donor-conceived Victorians.

"We believe all donor-conceived people should have the right to know about their genetic heritage, no matter when their donors donated. This information can make a huge difference to the lives of donor-conceived Victorians. If this information is available, it shouldn't be kept from them."




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Only in Sweden


Ernada Hidanovic and her son Armando, refugees in Sweden / Paul Madej      

The political and policing problems of allowing hundreds of thousands of refugees from Africa, the Middle East, and Afghanistan to plod into Western Europe tend to overshadow the difficulties of settling them into a new and alien society.

On the medical front countries in Western Europe are well prepared to cope with the massive influx, according to the World Health Organization. But inevitably there are exotic health issues. Female genital mutilation is one that has made headlines. One that hasn’t is “resignation syndrome” in refugee children and adolescents in Sweden.

This must be one of the most bizarre medical stories of the past decade, although it has received almost no publicity outside of Sweden. Hundreds of children and teenagers, aged 7 to 19, have been diagnosed with a mysterious ailment which leaves them unable to eat, speak and move. According to an article by Dr Karl Sallin and colleagues in Frontiers of Behavioural Neuroscience, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.

Unless they are given intensive nursing care, they will die.

And it happens only in Sweden.

In 2014 Swedish medical authorities started calling the phenomenon “resignation syndrome”, but this is just a label, not a solution. All of the affected children are members of ethnic minorities, many of them from former Soviet republics, with a disproportionate share being Uighurs. Many of them have been traumatised by experiencing domestic abuse, witnessing violence or being harassed. But only children from refugee families are affected; unaccompanied children are not.

None of the conventional explanations hold water. It could be a reaction to stress and trauma. It could be a projection of the anxieties of traumatised mothers. But there are 50 million traumatised refugees scattered all over the world. Why does “resignation syndrome” happen only in Sweden?

Dr Sallin proposes a two-fold diagnosis in his article. He argues that the affected children are actually suffering from an old and well-studied ailment: catatonia. They are conscious, but unable to move or respond, even to painful stimuli.

His second point is more controversial. He maintains that it is a kind of mass hysteria. Jean-Martin Charcot, a French neurologist in the late 19th century, was the first to characterise this phenomenon. The symptoms of his patients, mostly women, were recurring fits, often quite bizarre, which seemed to follow a standard path of growing severity.

After ruling out a physical cause, he concluded that the cause was psychological, and the ailment was transmitted by imitating other people’s hysterics. When the symptoms became “unfashionable”, the hysterical fits declined. Sallin believes that symptoms of hysteria evolve over time “through the continuous negotiation between physicians and patients immersed in cultural context”. This leads him to suggest that the refugee children are suffering from a mass psychogenic illness tailored for people in their community, just as in past outbreaks.

So this leads us to the bioethical angle to this strange phenomenon. Publicising the illness in the media may make the public more aware of a pressing public health issue, but it may be spreading it at the same time. And indeed it appears that there was a peak in cases of “resignation syndrome” when it was given extensive coverage in the media.

So Sallin concludes with a morose reflection upon the dilemma that doctors find themselves in. As physicians they are bound to tube-feed their catatonic patients, but caring for them may cause the syndrome to spread even further: “The appeal to culture-bound psychopathology raises an ethical dilemma … by offering treatment, to which there is no alternative, we are also, on another level, causing new cases.” 

Thanks to a post on the Ethics Blog of Pär Segerdahl, of the University of Uppsala




MORE ON THESE TOPICS | refugees, resignation syndrome, Sweden

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Legal abortion for men – not even in Sweden




Why limit abortion rights to women? A Swedish political group aligned with the country’s centrist party has proposed that men be given the right to ‘abort’ responsibility for their unborn children.

At a recent meeting, the LUF West – a regional branch of the youth wing of the centrist Liberal Party – backed a proposal to give men the opportunity to abdicate responsibility for a child up to the eighteenth week of a woman’s pregnancy.

The branch’s members believe that current legislation is vague and does not allow for the possibility of a man to jettison paternity early on if they so wish.

According the branch’s chairman, Marcus Nielsen, there are many men who are afraid to say they don’t want children or don’t want to play a part in the parenthood when their partner becomes pregnant.

“It is important that men are honest with their intentions”, Nielsen told the newspaper Aftonbladet. “There should be no sloppy legislation”.

Politicians from all sides of politics have criticized the group’s proposal.

Even Nilsen’s own party has rejected the proposal, saying the extant law is sufficient. "We think that the current legislation is good as it is," Eric Aronsson, press officer for the Liberals, told the website Nyheter24.

Carl B. Hamilton, a former Liberal Party politician, labeled the LUF members libertarian "idiots". 




MORE ON THESE TOPICS | abortion, discrimination, libertarianism, Sweden

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The forgotten history of Australian POWs, victims of Nazi doctors


German soldiers parachuting into the Battle of Crete   

It is small beer compared to other World War II atrocities but an historian has uncovered the story of five Australian POWs who were experimented on by an SS doctor.

About 3,000 Australians were amongst the 30,000 Allied troops captured after a massive airborne invasion by the Wehrmacht in May 1941. Recently records relating the fate of five of these men were discovered in Australian government archives by the historian of the Sydney Jewish Museum, Konrad Kwiet, and orthopaedic surgeon and medical historian George Weisz.

They were spotted in a prison camp by a bacteriologist working in the SS, Dr Friedrich Meythaler, who was investigating how humans become infected with hepatitis. None of the POWs gave their consent, of course. Mr Kwiet explained to the ABC:

“He selected five healthy Australian POWs. He examined them, took their blood, they were X-rayed, and then he injected them with the blood of hepatitis-infected German soldiers …

“He injected the infected blood into the Australian prisoners of war and then he again examined them, and what he found is that after a few days they responded with an enlargement of the liver, then an increase of temperature and other symptoms …

“He was engaged in experiments that the Nazi regime offered him, enhancing his career and moving into an area of research that he normally would not have achieved in a more civilised or democratic society.”

The soldiers were luckier than many victims of experimentation at the hands of Nazi doctors (some of who survived and moved to Australia, including twins under the care of the infamous Dr Josef Mengele). None of them died as a result of the treatment. One escaped to Egypt where he informed authorities; one was killed attempting to escape; and the three others were repatriated at the end of the war. But nothing was ever reported about their experiences. Now all of the soldiers have passed away.

Dr Meythaler’s research was published in a medical journal in 1942. As a member of the Nazi Party, he was banned from the medical profession for two years. But eventually, he became a highly-respected hepatitis expert, a director of medicine at Nuremburg Hospital and a professor at Erlangen University in Nuremberg. He was never prosecuted for his experiments. 




MORE ON THESE TOPICS | Australia, Nazi doctors, World War II

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Crispr will lead to designer babies, says geneticist


It’s worthwhile knowing what the scientist behind the deveopment of CRISPR, the revolutionary gene-editing technology, thinks about the ethics of using it.

In an interview with the Wall Street Journal, geneticist Jennifer Doudna, of the University of California Berkeley, believes that designer babies are only a decade away.

But for the moment, she believes that there should be a moratorium on editing the human genome, especially for traits like eye colour and IQ. “It should not proceed until we have a chance to understand better how the technology operates in those kinds of cells, as well as to provide time for societal consideration,” she says. But she does believe that CRISPR should be used to cure genetic diseases such as cystic fibrosis and muscular dystrophy. When the wrinkles are ironed out, CRISPR will become as common as IVF is nowadays.

“I wonder if over time people will get comfortable with the idea of human genome editing in embryos, at least if it were going to correct a mutation that would otherwise give rise to a debilitating lifetime disorder and maybe to even remove some kinds of debilitating bad diseases from the human genome completely.”

Tinkering with the genome is a momentous step, she acknowledges:

“It’s kind of a profound thing because if you really think about it; it really means altering human evolution on some level.”




MORE ON THESE TOPICS | CRISPR, genetic engineering

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Brazilian bioethicist murdered


Although their field deals with immensely controversial life-and-death topics, most bioethicists do not die a violent death. 

However, prominent Brazilian bioethicist Antonio Moser, 75, was murdered earlier this month by two men on a motorcycle who shot him as he was driving his car in a suburb of Rio de Janeiro. Three days of official mourning in his honour have been declared by the mayor of Petropolis, where Moser lived and worked. The murderers escaped, but they may have been trying to steal his car.

Dr Moser was a Franciscan friar, a specialist in bioethics and head of Brazil’s biggest Catholic publishing house, Editorial Vozes. He was the author of 27 books and countless articles. As a moral theologian he published extensively on issues relating to bioethics, biotechnology and sexuality. He appeared regularly on a Catholic TV station and was on his way to the studio when he was killed. 




MORE ON THESE TOPICS | bioethicists, Brazil

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UK health service may harvest organs from babies with lethal defects


The UK’s National Health Service is to encourage pregnant women whose children have a fatal birth defect to bring them to term so that their organs can be harvested. This shocking story was reported by the Mail on Sunday, so it must be taken with a grain of salt. However, the newspaper quotes a number of doctors who support the idea  and cites plans being studied by the NHS.

The proposal was apparently mooted at the annual conference of the British Transplantation Society in Glasgow. 

Transplant surgeon Niaz Ahmad, of St James's University Hospital in Leeds, said: “We are looking at rolling it out as a viable source of organ transplantation nationally. A number of staff in the NHS are not aware that these organs can be used. They need to be aware. These can be transplanted, they work, and they work long-term.”

Apparently anencephalic babies are ideal for this purpose. These are children who are born without a brain, or with very little brain tissue. In today’s UK hospitals 230 are aborted annually and only 12 brought to term. However, more and more women are deciding not to abort the child, according to Dr Joe Brierley, a specialist at Great Ormond Street Hospital for Children in London. Women who have made this decision could be counselled that their child’s organs could benefit other patients. Near the time of birth the child would be pronounced brain-dead and its organs removed.

However, the newspaper reports that NHS Blood and Transplant said: “Under no circumstances would our staff or anybody else within the NHS pressure women to continue with a pregnancy solely for the possibility of organ donation.” 

Dr Brierley defended the plans vigorously:

Given that three people a day die waiting for an organ transplant, I welcome anything that improves the number of donors. Helping the families of those dying in intensive care to have the best information to make this decision is vital. With anencephaly, such discussions occur with a woman who has been told her pregnancy may result in stillbirth, or – if the baby is born alive – it will die as a newborn.

Whilst provision of such information is the cornerstone of good care, my view is that this should not be used to persuade a woman not to undergo termination. However, if a decision is made to continue the pregnancy for other reasons, then all palliative care options – including donation – ought to be discussed.

Bioethicist Dr Trevor Stammers told the Mail on Sunday that the suggestion was “abhorrent”. “It is a ghoulish suggestion that can only undermine public confidence in transplantation – one of the greatest medical advances of my lifetime. The concept reduces the baby to nothing more than a utilitarian means to an end – a collection of spare parts – rather than respecting life for its own sake.”




MORE ON THESE TOPICS | infant organ donation, transplant ethics

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More bracket creep in Belgian euthanasia


Three bills which could significantly expand the scope of euthanasia in Belgium have been proposed by Laurette Onkelinx, the leader of the Belgian Socialists and a former Deputy Prime Minister.

The first (PDF) would remove a five-year sunset clause for advance declaration of a patient’s willingness to accept euthanasia. This would mean that a document written 20 or 30 years before would be valid, no matter what a patient might have thought in recent times.

The second (PDF) would force doctors to give a rapid turn-around to requests for euthanasia. They would have to answer within seven days. If they refused, they would have to transfer the patient’s file to a doctor who would be willing to give a lethal injection. This threatens to remove physicians’ right to conscientious objection to euthanasia. It would also force doctors to treat a request as a matter of urgency, even though it might have come during a psychological crisis which would soon pass.

The third (PDF) would remove the right of institutions like hospitals or nursing homes to refuse to allow euthanasia on their premises. Ms Onkelinx insists that institutions have no right to conscientious objection; only doctors do. Her bill affirms a doctor’s right to follow his conscientious belief in the practice of euthanasia. In an explanatory memorandum, she invokes the principle that “a doctor can be neither forced to nor prevented from practicing euthanasia in legal conditions, wherever he might be.”

Although the proposals are radical, they have hardly been reported, even in the Belgian media. 




MORE ON THESE TOPICS | Belgium, euthanasia

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Controversial report to support legalisation of surrogacy in Europe


 

With a range of inconsistent statutes amongst member states, surrogacy is becoming a political football in Europe. Accusations of conflict of interest are being raised in the lead-up to a debate next week in a committee of the Parliamentary Assembly of the Council of Europe (PACE).

(Non-Europeans will have to concentrate very hard to track the Byzantine layers of bureaucratic acronyms. Sorry.)

On March 15, in Paris, the Social Affairs, Health and Sustainable Development Committee of PACE will consider a draft report on “human rights and ethical issues related to surrogacy” and probably vote on a draft resolution and recommendations.

The report has been written by a Belgian member of the European Parliament, Dr Petra de Sutter, who made fact-finding visits to the UK and the Ukraine last year. If the report is adopted, it will be debated by the 324-member plenary Assembly, which brings together parliamentarians from all 47 member States of the Council of Europe.

Dr de Sutter is a controversial choice as a rapporteur. She is a member of the Belgian Greens and head of the Department of Reproductive Medicine at Ghent University Hospital. She is a partner with an Indian surrogacy clinic, Seeds of Innocence. The clinic boasts that she had made its service “unique” in a highly competitive market for international patients.

She is also an openly transgender politician. Her autobiography (Over)leven: Mijn strijd als transvrouw, arts en politica ((Over) life: My struggle as a trans woman, doctor and politician) was only published a few weeks ago.

She was criticised in the French edition of the Huffington Post over an apparent conflict of interest over her association with Seeds of Innocence. In a strongly-worded response, she said that her colleagues had found that there was no conflict of interest. She rejected commercial surrogacy and even thought that it should be banned. However, Europe has to accept that surrogacy exists and that vulnerable children and mothers should be supported.

Dr de Sutter faces stiff opposition. A number of official EU documents  take a very dim view of surrogacy as a solution for infertility.

The Annual Report on Human Rights and Democracy in the World 2014 and the European Union’s policy on the matter (which was voted on in December 2015) stated that it: “Condemns the practice of surrogacy, which undermines the human dignity of the woman since her body and its reproductive functions are used as a commodity; considers that the practice of gestational surrogacy which involves reproductive exploitation and use of the human body for financial or other gain, in particular in the case of vulnerable women in developing countries, shall be prohibited and treated as a matter of urgency in human rights instruments.”





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Sharapova’s stumble revives doping debate


Maria Sharapova in the quarter-final of the Australian Open  

Top-ranked Russian tennis pro Maria Sharapova has admitted that she failed a drug test at the Australian Open after taking a banned substance called mildonium (mildronate). The consequences for her career and her income are likely to be substantial.

The incident has revived the debate about the wisdom of banning more and more performance-enhancing drugs. Sharapova had been taking the drug for years for a magnesium deficiency, irregular electrical activity in the heart, and a family history of diabetes. It was only placed on the list of forbidden substances in January. Her excuse is that she overlooked an emailed warning.

But whether or not she took it deliberately, haven’t we created a bureaucratic monster, asks Oxford bioethicist Julian Savulescu. He says that “a hidden clause in WADA’s [World Anti-Doping Agency’s] code is that something will be banned if it is both performance-enhancing and artificial, either in preparation or delivery.” But is there a reasonable basis for the distinction between “natural” and “artificial”? Savulescu says No.

But what moral difference does it make whether something is natural or artificial? Outside of drugs, sport is full of artificial enhancers: running shoes are artificial, aero helmets are artificial, chlorinated swimming pools are unnatural.

Instead of taking an intuitive approach of “knowing it when we see it”, we should ban substances or practices that are clearly or probably unsafe. And we should ban specific substances that corrupt the spirit of a particular sport – that is, that substantially reduce the human element, on a sport-by-sport basis.




MORE ON THESE TOPICS | drug doping, drugs in sport, sports

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Panel on infant lives meets in Washington


Professor G. Kevin Donovan of Georgetown University testifying before the Panel

The US Senate Select Investigative Panel on Infant Lives met for the first time last week, in a heated session that saw several experts testify against the procurement of fetal tissue for research. The panel was convened following the release of several videos apparently capturing Planned Parenthood employees negotiating the sale of tissue to private research firms.

Tensions on the panel were evident even before testimony began. Democrat and Republican representatives clashed over the subpoenaing of the names of researchers, technicians and medical personnel working in a select number of abortion clinics.

Referring to a shooting late last year at a clinic in Colorado, Democratic representative Jan Schakowsky said, “Linking individual’s names to an investigation that the Republicans describe as examining the ‘harvesting of baby body parts’ and the ‘horrific practices’ of abortion providers puts people in danger”. The chair of the committee, Republican Marsha Blackburn, replied that  the panel is “entitled to the information,” and a Democratic motion to quash the three subpoenas issued thus far was defeated on a party-line vote.

Bioethicists and scientists with a variety of perspectives appeared before the panel.

Professor G. Kevin Donovan of Georgetown’s Pellegrino Center for Clinical Bioethics said that said that tissue might be harvested from spontaneous miscarriages, thus avoiding the moral implications of using aborted fetuses. “If we cannot act with moral certainty regarding the appropriate respect and dignity of the fetus, we cannot morally justify its destruction. Alternatives clearly exist that are less controversial, and moral arguments exist that support our natural abhorrence at the trafficking of human fetal parts. Surely we can, and surely we must, find a better way.”

R. Alta Charo, of the University of Wisconsin, a well-known bioethicist, took a utilitarian line. Fetal tissue is necessary for life-saving research. Besides, she said, “Critics have overwhelmingly partaken of the vaccines and treatments derived from fetal tissue, and give no indication that they will foreswear further benefits. Fairness and reciprocity alone would suggest they should support the work, or at least, not thwart it.”

Lawrence Goldstein, a stell cell scientist from the University of California San Diego, was similarly pragmatic: “My message is simple,” he told the committee. “Fetal tissue and cells that would otherwise be discarded play a vital role in modern cutting edge medical research. These fetal tissues and cells cannot be replaced by embryonic stem cells, reprogrammed stem cells, or adult stem cells.”

One of the most interesting contributions came from Kathleen M. Schmainda, of the Medical College of Wisconsin, a radiologist. If fetal tissue were needed to cure a disease like Parkinson’s which afflicts a million Americans, three or four aborted babies might be needed for each patient.  “So, 4 million babies would need to be aborted to treat this one disease, not to mention the number needed to treat patients worldwide. Imagine the magnitude of the demand for fetuses to cure yet another disease like Alzheimer’s, which affects 44 million persons worldwide? Do we really want a world where the most vulnerable, those with no voice, are subject to the whims, desires and perceived needs of others? Clearly we will have created industrialized harvesting of preborn babies, a crime against the human race.”

The committee is expected to meet again in the coming months to hear from additional witnesses and enter newly obtained documents into the congressional record.

 

 





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First US womb transplant fails


The first womb transplant to take place in the US has failed – under dramatic circumstances. The recipient of the transplant, who was operated on last month, appeared smiling and healthy with doctors at a media conference on Monday. Yet just a day later there was a sudden complication that required specialists to remove the transplanted uterus.

The clinic released a statement on Wednesday about the emergency operation:

“There is a known risk in solid organ transplantation that the transplanted organ may have to be removed should a complication arise. The medical team took all necessary precautions and measures to ensure the safety of our patient.”

The woman, known only as Lindsay, said she was recovering well after the womb removal:

“…Unfortunately I did lose the uterus to complications. However, I am doing okay and appreciate all of your prayers and good thoughts.”

The Cleveland clinic is set to perform another nine uterus transplants as part of a pilot US study into the procedure. Two other hospitals, Texas’s Baylor University and Boston’s Brigham and women’s hospital, will also participate in the study. Doctors in Sweden have already performed a number of successful uterus transplants, resulting in the birth of five healthy babies





This article is published by Xavier Symons and BioEdge 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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Smoking – licence it or tax it?


In academic discourse the merits of regulating smoking are a forgone conclusion. The question under debate now is how to regulate. In a commentary published in the Journal of Medical Ethics this week, Sydney University Public Health academic Simon Chapman advocates a ‘smoking licence’ – a policy that he has promoted for some time.

Chapman argues that governments should implement a licensing system whereby all smokers have to pay a license fee and undertake a smoking ‘risk knowledge test’. There would be different grades of licence depending on the frequency with which one smoked each day, and the cost of the licence would increase with the grade. 

Chapman believes that his proposed model is a plausible model for implementation in countries with advanced anti-smoking campaigns: “The proposed smoker’s license described below merits serious consideration as a major platform in the tobacco control endgame now being considered in nations with advanced records of reducing smoking” he wrote in a highly cited 2012 article.

In his JME commentary Chapman presents his position as a ‘milder’ version of the prohibitively expensive licence proposed by Daniel Halliday, a philosopher at the University of Melbourne. Halliday’s proposed licence is indexed to the current excise tax on individual cigarettes in Australia –would be cost approximately A$3879 for a 20-cigarette-pack-a-day smoker. Chapman suggests Halliday’s tax will not “withstand a moment’s scrutiny from governments” due to the “fatal role of the ‘severe’ cost of the licence he proposes.”

Ironically the JME published an article last year advocating a much more severe policy than Halliday’s. Kalle Grill (University of Umea, in Sweden,) and Kristin Voight (McGill) argued for a total ban on smoking.




MORE ON THESE TOPICS | law, paternalism, public health, smoking

This article is published by Xavier Symons and BioEdge 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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David Bowie and palliative care


David Bowie’s impact on British society and culture was profound – so much so that a British doctor has mixed Bowie nostalgia with a reflection on the importance of palliative care. Dr. Mark Taubert, a palliative care specialist from Velindre NHS Trust in Cardiff, published an open letter in the BMJ ‘thanking’ Bowie for opening up a dialogue on palliation.

“Your story became a way for us to communicate very openly about death, something many doctors and nurses struggle to introduce as a topic of conversation,” Taubert writes.

Taubert recounts the last days of David Bowie – admittedly with some poetic licence – and describes how palliation would have helped him. Taubert says he has recently used Bowie’s example as a means to persuade patients unsure about palliative care. Patients are reluctant to talk about death, Taubert suggests, and there is usually a need for doctors and nurses to establish a rapport with patients before they will discuss end of life treatment.  




MORE ON THESE TOPICS | cultural bioethics, palliative care, UK

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Bioethics and natural law: an interview with John Keown


Bioethics discourse is often divided into two broad categories: utilitarian perspectives and so-called deontological or Kantian approaches to ethics. An alternative viewpoint that receives far less attention is a natural law perspective on ethics and medicine. The natural law approach emphasizes interests or ends common to all members of humanity, and offers a teleological account of morality and human flourishing.

Professor John Keown of Georgetown University’s Kennedy Institute for Ethics recently co-authored a book on natural law with the late Georgetown Professor Alfonso Gómez-Lobo. The book is entitled Bioethics and the Human Goods: An Introduction to Natural Law Bioethics. The Deputy Editor of BioEdge, Xavier Symons, interviewed Professor Keown about his latest work. 

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Xavier SymonsWhat led you to write Bioethics and the Human Goods: An Introduction to Natural Law Bioethics?

John Keown: The book was largely written by my distinguished colleague and friend, the late Professor Alfonso Gómez-Lobo, who held the Ryan Chair in Metaphysics and Moral Philosophy at Georgetown. Before his untimely death at the end of 2011, he had submitted a manuscript to Georgetown University Press. With the kind permission of his widow, and with the approval of the Press, I completed the project, incorporating amendments that he had indicated, in his comments on the referees’ reports, that he wanted to make, and some amendments that I thought appropriate. About a third of the book is material I added to his original manuscript. I thought it important, given the regrettable dearth of introductory books on bioethics from a natural law perspective, that his manuscript should be enlarged, updated and completed

What contribution do you think natural law can make to the field of bioethics?

Natural law has made, and has the potential to make in future, a signal contribution to the ethics of healthcare and to bioethics more broadly conceptualised.  Natural law theory could be described as the most enduring and important moral tradition in Western thought, and it has had a profound influence on Western law, professional medical ethics, and culture.

Many laws and codes of ethics are grounded in the natural law articulation of certain fundamental moral principles that should always be respected, regardless of the consequences. For example, in relation to euthanasia, the prohibition on intentionally killing patients, which is still reflected in the law of the vast majority of jurisdictions, and in the ethics of the World Medical Association, is grounded on one such principle: the principle that it is always wrong intentionally to kill a person, even at that person’s request. 

Unlike other approaches to bioethics, most notably utilitarianism, natural law theory can offer a coherent account of the intrinsic wrongness of treating patients in certain ways, such as intentionally killing them, lying to them, or exploiting them, however beneficial it might be to others or to society to do so.

Moreover, although utilitarianism and ‘principlism’, in their various forms, are undoubtedly dominant in bioethics education today, it is important for students to realise that there is an alternative ethical tradition, one which makes sense of much of contemporary law and professional ethics, and which offers a radically different approach to bioethical reflection. Indeed, it seems to me that no student can understand bioethics (or, indeed, biomedical law) properly without at least a basic grasp of natural law theory. Without such a grasp, they have at best a partial understanding of the field. I fear that the many students of bioethics who are unfamiliar with the natural law tradition do not even know what they do not know.

Unfortunately, although the literature on bioethics is vast, that literature largely either ignores natural law theory, mentions it only in passing, or misunderstands it. There is, therefore, an important and urgent need for this book, and more books like it.  

I have lost count of the number of times I have been asked ‘Could your recommend a clear, introductory book on natural law bioethics, suitable for the college student or the general reader?’ Now, I have a ready answer. Previously, I recommended one or two books like Professor Gómez-Lobo’s Morality and the Human Goods (Georgetown University Press, 2002). However, although that book does touch on a number of bioethical issues (especially abortion and euthanasia), it is more an introduction to natural law ethics rather than natural law bioethics.  Still, it would make an excellent companion volume, and I think students would find it valuable to read it before reading Bioethics and the Human Goods.

Professor John Keown

The book mentions ‘basic goods’ and their importance for natural law theory. What are they and why are they so important?

The starting-point for natural law theory is to ask ‘What is the Good Life?’ It rejects standard utilitarian answers, whether in terms of pleasure or the satisfaction of desires, both of which could be used to justify obviously immoral acts. The answer given by natural law theory is that the Good Life is a life which involves true human fulfilment or flourishing. And what is a truly flourishing life? One in which one participates in the goods of life, health, friendship, knowledge, appreciation of art and beauty, work, play and practical reasonableness. (The precise formulation of basic goods may vary depending on which theorist one reads, but the theorists share the same, basic idea.) These goods are ‘basic’ in the sense that they are not merely instrumental goods, but are ends in themselves, worth pursuing for their own sake, and self-evidently so. (Of course, basic goods like health and knowledge can also be instrumentally valuable, but that does not reduce their worth to mere instrumentality. It is, for example, good for us to know about bioethics, or the history of the American Revolution, or one’s own personal history, even if one never uses that knowledge instrumentally.)

The basic goods form an objective basis for natural law ethics, but they need to be supplemented by intermediate moral principles, intermediate between the basic goods and our judgment about the ethics of particular conduct (‘Is it right for me to tell the patient he is fine when I know he is dying?’ ‘Should I allow the patient’s refusal of consent to prevent me from carrying out harmless and potentially ground-breaking research on her while she is anaethetised?’)  Much of Professor Gómez-Lobo’s book Morality focused on the key principles of ‘care’ and ‘respect’. In Bioethics he reformulates them in terms of ‘beneficence’ and ‘non-maleficence’. In doing so, he recognises the influential ‘four principles’ approach advocated by Professors Tom Beauchamp and Jim Childress, but he explains how those principles are conceived and applied from a natural law, rather than from a principlist, perspective. He rejected the ‘four principles’ approach on the ground that it failed to give a substantive account of the Good. Without such an account, he argued, it is impossible to judge what truly benefits or harms another.

In your book you suggest that, although natural law theory is compatible with major religious traditions, it is not grounded in religion. Can you explain?

Adherents of the great religions will find much in natural law that resonates with their teachings, such as its insistence that all human beings share a fundamental equality-in-dignity, including the most vulnerable, whether babies, people with profound intellectual disabilities, the comatose, the demented, the suffering and the dying.

For example, natural law theory’s opposition to infanticide (in contrast to its endorsement by leading utilitarians) resonates with the long-standing opposition to infanticide in the Judaeo-Christian tradition (in contrast to its endorsement by the ancient Greeks and Romans).  Natural law thinkers reject the ‘dualist’ notion of personhood, in which only some human beings, with certain mental abilities, count as ‘persons’ and others, like babies or elderly folk with severe dementia, do not.  Moreover, natural law theory is the philosophical tradition of the Catholic church.  Further, my brother Professor Damien Keown has, in his many publications, noted similarities between natural law ethics and Buddhist ethics. 

Despite these resonances between natural law theory and teachings of the great religions, however, natural law theory remains a philosophy, not a theology. It traces its origins to pre-Christian Greek thinkers like Aristotle, and is reflected in contemporary human rights documents in what many would describe as our post-Christian world.  Anyone can, and many do, adopt natural law’s absolute prohibitions on, say, torture or euthanasia, without having any religious belief whatsoever. In short, natural law is grounded on reason, not faith.

Is there not some distance between natural law theory and a detailed practical ethics? How can a medical practitioner use it to address thorny ethical issues in clinical practice?

There is always a distance between theory and practice, whichever ethical theory one adopts. But, partly because of the centuries-long history of the natural law tradition, much of the intellectual heavy lifting about its application to practical situations has already been done. That rich storehouse of reflection has shaped our laws and codes of professional ethics, whether in relation to carrying out research on patients, to treating or withholding treatment, and to killing or not killing.

That is not to say that natural law has figured out definitive answers to all the bioethical questions clinicians face in the contemporary world, but many of these questions are largely old questions in a new form. For example, the question of the moral status of the human embryo in vitro may have seemed utterly novel to many, but natural law theorists have been reflecting on the moral status of human embryos in vivo for centuries.  Again, the question whether to withhold or withdraw tube-feeding from a patient in PVS may, again, seem completely new and to require us to invent new ethical principles, but to natural law thinkers the answer lies in applying established ethical criteria which ask whether tube-feeding is a medical treatment and, if so, whether it is disproportionate as being either futile or too burdensome. This is not to suggest that the answers to such questions are easy, and will always attract consensus (even among natural law theorists) but it is to say that even challenging, contemporary bioethical questions can be resolved by the intelligent application of well-established principles.

In any event, we should not forget that most clinicians, most of the time, are not confronted with complex, thorny bioethical issues.  Most bioethical issues they face in everyday practice are fairly easily resolved by the application of established principles and codes of bioethics, such as those requiring informed consent and respect for confidentiality. And those principles and codes often reflect, to a greater or a lesser extent, natural law thinking, which requires respect for the basic rights and equality-in-dignity of each patient, not least the vulnerable, and that patients never be used as a mere means to the good of others. 

What would you say to natural law critics of the ‘new’ natural law theory which has been championed by philosophers like Grisez and Finnis?

Professors Grisez  and Finnis (and their collaborators, not least Professor Boyle) have been largely responsible for the exciting renaissance of natural law theory over the past 35 years or so. They would resist the label ‘new’ natural law on the ground that their theory is but a modern restatement of classical natural law theory. Not all natural lawyers would agree with that, but it seems to me that many of the criticisms are based on misunderstandings of the ‘new’ natural law project. This is one reason I co-edited (with Professor Robert P George of Princeton) a Festschrift in honour of John Finnis, (Reason, Morality and Law: The Philosophy of John Finnis) which was published by Oxford University Press in 2013, to allow both supporters and critics of his new classical theory to engage with him, and him with them.

In any event, college students and health care professionals interested in learning the basics of natural law bioethics may well find disagreements about whether and if so how the new classical theory of natural law differs from the old rather abstract and abstruse, and I would encourage them to start with some of the more introductory books and articles on natural law bioethics, written by scholars including Christopher Kaczor, Christopher Tollefsen, David Oderberg, Luke Gormally, David Jones, Helen Watt  and, of course, the late Alfonso Gómez-Lobo.




MORE ON THESE TOPICS | bioethics, ethics, Interviews, natural law

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Ivy League agrees to tackling ban


Dartmouth clashes with Yale in 2009 (AP Photo/Bob Child)   

In January Steven H. Miles and Shailendra Prasada argued in the American Journal of Bioethics that it was unwise, unsafe and unethical for youngsters to play football.

Public schools should end their football programs because of the high prevalence of concussions… The brain is an irreplaceable organ, the health of which is foundational for the ability to learn, socialize and for fully realizing life’s physical and vocational opportunities.

Now the Ivy League, a conference of eight universities which play each other in a famous traditional rivalry, has agreed to stop all full-contact hitting from practices during the regular season. This is “the most aggressive measure yet to combat growing concerns about brain trauma and other injuries in the sport,” says the New York Times.

Research shows that fewer full-contact practices reduces the number of concussions.

Momentum for the change was created by the coach of Dartmouth University, Buddy Teevens. He introduced it in 2010 – but went on to an impressive record. His team placed third in the Ivy League in 2013, second in 2014 and equal first last year. “It hasn’t hurt our level of play,” he said. “It’s actually made us a better team.”

And bioethicist Arthur Caplan told Forbes:

“There’s two real incontrovertible points: The only real way to make the game safer that we know of right now is not equipment, but diminishing contact. There’s no equipment fix for injury. There is some hope that if you train a little more smartly, you can avoid certain orthopedic injuries, but I don’t see anything that’s going to cut back on the head injuries except less contact. So to put it succinctly: The only way to make it safer is to play it differently.”




MORE ON THESE TOPICS | football concussion

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Canadian ethicists prepare for the worst


Conscientious objection seems like the paradigmatic ethical choice between right and wrong. An ethicist, of all people, ought to have this option, just as mathematicians count or sopranos sing.

Not so fast, write two healthcare ethicists at the Centre for Applied Ethics at McGill University Health Centre, in Montreal, in the blog Impact Ethics. Now that the Canadian Supreme Court has declared that euthanasia is a human right, it is time to focus on who is entitled to conscientious objection to participating in euthanasia. And perhaps ethicists are not.

We found ourselves asking the following questions: Should a clinical ethicist have the right to conscientious objection in cases of medical aid in dying? Can the role of the clinical ethicist to provide ethics analysis in matters of moral ambiguity be reconciled with a right to opt-out on the basis of personal convictions?

The nub of the question is this: when an ethicist is asked for advice, is she involved as a human being or is she merely a database of ethical choices? The ethicists write:

On the other hand, there is a growing consensus that clinical ethics expertise is grounded in the competence of the clinical ethicist to facilitate a robust process aimed at ensuring fair and transparent healthcare decisions. The clinical ethicist is expected to adopt a stance of neutrality which allows her to facilitate discussion of competing values without allowing her own beliefs to influence the discussion. 

On this view, it is not the “rightness” or “wrongness” of the final outcome by which the clinical ethicist is professionally judged, but rather her skill in guiding various stakeholders through a reasonable process; a clinical ethicist’s personal convictions should not impact on her ability to facilitate this process. In this sense, perhaps the right to conscientious objection is antithetical to the provision of clinical ethics consultation, as it seems to call into question the profession’s ability to remain neutral on morally contentious issues.

There is an urgent need, the authors write, to articulate the rights and duties of healthcare ethicists, as in the wake of Carter v Canada, the euthanasia case, the boundaries will be tested.

It would be interesting indeed if Canadian ethicists who oppose euthanasia are told to pack their bags and look elsewhere for jobs. What do unemployed ethicists do? Work in Starbucks? Become an Uber driver? There are some great ideas at the website of the Unemployed Philsophers Guild -- making coffee mugs, finger puppets, and scented soap. 





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Sanitizing the language of clinical trials


Which would you rather participate in: a medical study or a medical experiment? Almost everyone prefers a “study”.

Since perceptions are so important for successful clinical trials, in 1995 the Advisory Committee on Human Radiation Experiments asked people what they associated with an “experiment”. “I envision all kinds of weird things done to the body, and I assume that's not true, but also I envision a medical experiment maybe... done in a laboratory sealed up somewhere where no one even knows what [is] going on,” replied one person.

Drug companies need volunteers to test products, so the image of medical research is crucial. In 2008, Eli Lilly funded a campaign to rebadge “guinea pigs” as “medical heroes”.

In a provocative essay in The Hastings Center Report, Carl Elliott, a bioethics gadfly, asks hard questions about the ever-more sanitised language of clinical trials. He points out that in the 1960s, bioethicists used language like “experimental subjects,” “human experimentation,” and “experimentation in man.” But nowadays, the word experimentation has disappeared even from key bioethics protocols such as the Helsinki Declaration.

Yet the clinical trials are experiments and sometimes disaster strikes. Earlier this year, for instance, one man died and four others were hospitalised in France in a trial of a drug called BIA 10-2474, which had been created by the Portuguese pharma company Bial.

Even bioethicists have been affected by the slow shift away from the language of risk to the language of altruism. Elliott writes:

The choice to abandon the word “experiment” is emblematic of a larger movement beginning in the 1990s, in which many bioethics scholars moved from being critics of the research enterprise to being its champions. Probably the most striking example is the argument now made by a number of prominent bioethicists that every citizen has a moral duty to enroll in research studies. “There is a prima facie obligation to participate in biomedical research,” a group from the Department of Bioethics at the National Institutes of Health has written—an obligation that includes even research sponsored and designed by the pharmaceutical industry. “Whether a study is publicly or privately financed,” the group insists, “has little bearing on the obligation to participate in that study.”

No surprises there, says Elliott in a characteristically caustic style: “As long as bioethicists worship in the same church as the scientists and the clinicians, it will feel natural for them to sing the same hymns.”




MORE ON THESE TOPICS | clinical trials, research ethics

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Treating racist patients


Here’s an interesting ethical conundrum. How should a doctor respond if he or she is rejected because a racist patient rejects them? An article in the latest issue of the New England Journal of Medicine  opens with this confronting scenario:

A 77-year-old white man with heart failure arrives in the emergency department of an urban hospital at 3 a.m. with shortness of breath and a fever. When a black physician enters, the man immediately announces, “I don’t want to be cared for by a %$#!{& doctor!” Taken aback, the physician retreats from the room. She’s offended by the man’s rejection and demeaning language — but knows that he may have a serious medical condition and that she cannot treat him against his will. How should the physician proceed?

The authors suggest that encounters like this may become more common as the United States becomes more ethnically diverse. It is a tricky situation, because the patient has a right to refuse medical care, including care from a unwanted doctor. On the other hand, health care workers have a right not to be discriminated again. Nurses have successfully sued hospitals which required them to accommodate patients’ prejudices. Doctors, however, have not brought lawsuits, as their employment conditions are different.

The authors have created a template for examining the practical and ethical issues raised by these cases: “the patient’s medical condition, his or her decision-making capacity, options for responding to the request, reasons for the request, and effect on the physician”. They conclude:

Although institutions should not accommodate, for individual physicians the decision to accommodate may be sound when the accommodating physician is comfortable with the decision, employment rights are protected, and the decision does not compromise good medical care.




MORE ON THESE TOPICS | patient care, racism

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Nurse ignites debate over euthanasia in Portugal


The head of Portugal's national nurses' association has blown the whistle on covert euthanasia in public hospitals. Ana Rita Cavaco told a radio program that she personally had heard doctors discussing the topic.

She declared on the Catholic station Rádio Renascença, that euthanasia “is sometimes practiced in the health service hospitals, with doctors suggesting this solution for some patients”.

“I have personally witnessed such situations - I don’t need to look for further other examples. I have seen cases where doctors have suggested administering insulin to induce an insulin coma. I am not going to shock anybody as everyone who works in the health service knows these things happen out of sight and sound, so let’s talk about it openly.”

She gave no details, but the mere suggestion was enough for Portugal’s national medical association to demand that she be prosecuted for alleging that doctors were participating in an illegal activity. The association declared that Portuguese should have complete confidence in doctors.

"These statements can not be passed over in silence with the swiftness with which they were uttered. They are libellous and undermine the dignity of doctors and nurses, so it must be proven or clearly and formally denied".

The Health Ministry has ordered an urgent inquiry into the allegations.

The controversy comes at a sensitive time in Portugal as Parliament will probably debate euthanasia later this year, after a high-profile petition secured enough signatures to bring the matter before the legislature. 




MORE ON THESE TOPICS | euthanasia, Portugal

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Costa Rica’s battle with IVF


Couples who want Costa Rica's IVF ban lifted in a meeting last year with President Luis Guillermo Solís

In most countries, IVF is a fact of life, even if it is constantly caught up in controversy. However, in the Central American nation of Costa Rica, it has been banned since 2000. And four years after an international court ordered Costa Rica to lift the ban, the country’s legislature and courts are still successfully stalling.

The Inter-American Court of Human Rights (IACHR) ruled in 2012 that lack of access to IVF  infringed a right to private and family life. However, Costa Rica’s constitution says that life begins at conception and IVF is criticised because it involves wastage of embryos. The constitutional court banned it in 2000 for that reason.

So IVF has become a political football.

Last year President Luis Guillermo Solís signed a decree to legalise IVF but the constitutional court annulled it, arguing that IVF should be regulated by law and not by presidential decree. Now the IACHR has ruled that a presidential decree is sufficient.

The president is under pressure from six couples who sued Costa Rica after the constitutional court’s decision in 2000. They say that they can no longer wait, as their fertility is waning.




MORE ON THESE TOPICS | Costa Rica, IVF

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The nuts and bolts of CIA torture


Can doctors participate in torture if there is a reasonable expectation of mitigating the harm done? It could be a seductive hope for a military doctor who is under pressure to cooperate.

However, in a book review in the Journal of Medical Ethics, Henry Shue, of Oxford University, explains that the latest CIA techniques of torture make even minimal participation ethically impossible, no matter how low the bar is set.

Contemporary torture is not so much physical as mental. Its goal is to make the person “psychological putty” in the hands of his interrogators.

The goal of the CIA paradigm as used in Guantanamo is to produce at least temporary regression to an infantile state in which the torture victim will become completely compliant (and therefore supposedly tell the torturers what they want to know). Infantile regression is produced by unhinging the structure of the self of the torture victim and alienating him from his own values through methods like sexual humiliation, religious contempt, sleep deprivation and temperature extremes.

An essential element in this is ensuring that no stable human relationship of any kind should develop between the victim and his captors.

… such total control is maintained over the victim that it is difficult for me to imagine how even if a well disposed doctor could manage to have meaningful conferences with a victim, or by some other method somehow discern what she took his genuine interests to be (as a physician attending an unconscious patient might), that the authorities at a torture site like Guantanamo would ever permit a doctor to take action that served the interests of the victim in a manner that was contrary to the demands of its relentless regression regimen.

A doctor needs to establish some bond with a patient and to understand his history in order to help him. But in this regimen, it would be impossible to know anything meaningful about the victim’s real state of mind. So it is quite unlikely that a doctor’s complicity with the torturers will ever succeed in lessening the pain of the victim. 




MORE ON THESE TOPICS | cooperation in evil, torture

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“At some point, I stopped looking back”


A man who has suffered for 14 years from Amyotrophic Lateral Sclerosis (ALS) has been a named president of the Agenzia italiana del farmaca (AIFA)- the peak body for regulating pharmaceutical products in Italy.

Mario Melazzini was named president by the Minister of Health in January 2016, after the previous president stood down as a result of accusations of conflict of interest. Melazzini, a 57-year-old doctor, was diagnosed with ALS in 2002. The average life expectancy for sufferers with this condition is around five years. Melazzini himself is wheelchair-bound and depends on a ventilator and on parenteral nutrition. In the summer of 2003 he had an appointment at an assisted suicide clinic in Switzerland; but he never showed up. Melazzini describes his change of plans simply: “at some point, I stopped looking back”.

In 2006, as president of the Italian Association of ALS patients, Melazzini intervened in the euthanasia debate in Italy that surround the case of Piergiorgio Welby. Among the goals he has in his new role, Melazzini says he wants to encourage the use of generic and biosimilar medicines, and to reinvest money saved to research diseases such as Hepatitis C. 

Dr Phil Elias writes from Rome. 




MORE ON THESE TOPICS | assisted suicide, disability, Switzerland

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Sweden could ban surrogacy


 

Eva Wendel Rosberg with Justice Minister Morgan Johansson. Photo: Erik Nylander / TT    

Both altruistic and commercial surrogacy should be officially discouraged in Sweden, according to a report to the government. Justice Eva Wendel Rosberg, the author, said that "The most important reason we do not want to allow surrogacy in Sweden is the risk of women facing pressure to become surrogate mothers. It is a big commitment and it involves the risks of becoming pregnant and giving birth." She also says that the government should prevent Swedes from going to IVF clinics abroad to recruit surrogate mothers.

There are still many unknowns about surrogacy, she observed. Women can be subjected to pressure to enter into a surrogacy arrangement. And little is known about how it affects the children themselves. Furthermore, under Swedish law, the birth mother is the legal mother, which could lead to complications if a surrogate changes her mind about the pregnancy.

Justice Wendel Rosberg’s recommendations conflict with another report from the National Council on Medical Ethics (SMER), which proposed that surrogacy would be acceptable provided that the surrogate mother and the commissioning parents had a close relationship.  Justice Wendel Rosberg said that SMER had examined only the medical ethics of the issue and had not studied the numerous complex legal issues involved in a surrogacy contract.

Left-wing Swedish journalist and anti-surrogacy activist Kajsa Ekis Ekman contributed a blistering commentary in The Guardian in support of a ban.

Surrogacy may have been surrounded by an aura of Elton John-ish happiness, cute newborns and notions of the modern family, but behind that is an industry that buys and sells human life. Where babies are tailor-made to fit the desires of the world’s rich. Where a mother is nothing, deprived even of the right to be called “mum”, and the customer everything. The West has started outsourcing reproduction to poorer nations, just as we outsourced industrial production previously. It is shocking to see how quickly the UN convention on the rights of the child can be completely ignored. No country allows the sale of human beings – yet, who cares, so long as we are served cute images of famous people and their newborns?

It will be interesting to see how the politics of surrogacy plays out in Sweden, where same-sex marriage is legal. Gay couples are becoming an important segment of the growing market for surrogate mothers around the world. Will their supporters be able to block the government’ plans? 




MORE ON THESE TOPICS | surrogacy, Sweden

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Is there a difference between genetic engineering and eugenics?


It is an oft-raised concern that genetic engineering may one day morph into a eugenics movement. Many are trying to differentiate the two, arguing that genetic engineering as such is merely an exciting scientific development that will help humanity rather enable an insidious ideology.

Writing for the Washington Post recently, journalist Robert Gebelhoff raised some of the ethical questions relevant to new CRISPR gene editing research.

Gebelhoff argues that the issues are not so much scientific as political, and that it will be policy makers who have the power to stop research that oversteps the bounds of good medicine or bioscience.

“In the end, where we draw the line will be a political question. The scientific community has already begun this discussion, but it’s not unreasonable to expect a more involved debate in the near future — one in which the general public will have a greater say in how science will proceed.”

Leading IVF specialist Lord Robert Winston sees the link as being a kind of hubris that could easily develop now that CRIPSR-Cas 9 research on embryos has been legalised:

“With the power of the market and the open information published in journals, I am sure that humans will want to try to ‘enhance' their children and will be prepared large sums to do so.

“Anybody undertaking these human experiments is likely to be highly vulnerable when things go wrong - though not as vulnerable of course as the unborn child. This may be an effective deterrent for the time being.”





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Peter Singer under fire, again


In an edition of the Journal of Applied Philosophy released this week, several academics discussed Peter Singer’s influential theory of “speciesism” – the view that human beings are inherently prejudiced toward their own species over others.

The target article of the discussion, the transcript of a lecture given by Yale philosopher Shelly Kagan, offers what Kagan says is a refutation of Singer’s notion of speciesism. Kagan, both an ethicist and metaphysician, considers in particular the moral ontology underpinning Singer’s theory, and argues that Singer provides insufficient evidence to show that sentience is the morally relevant property that one should consider when evaluating the importance of different species’ interests.

“…when a speciesist claims that it is more important to avoid human pain than it is to avoid animal pain — even pains of equal duration and intensity — Singer insists that this is mere prejudice: ‘pain is pain’ he tells us (Animal Liberation, p. 20). But what is the argument for this last step?...”
“…I do think we have to recognize that one would be hard pressed to think of anything other than intuition to support the claim that the line between sentience and nonsentience is a morally significant one…”

Kagan argues for a form of what he calls modal personalism – the view that what makes an entity morally more important is the modal property of “potential personhood” (i.e. the ability to become a person).

In a reply to Kagan, George Washington University bioethicist David De Grazia challenges the claim that potential personhood is grounds for giving moral status to an entity. De Grazia writes:

“…If a human being is not a person but would have been if not for some improbable accident that occurred when he was an infant, we may rationally regret his lack of personhood. But it is much less clear that the fact that he could have been a person constitutes a reason to regard him as having higher moral status than he enjoys just on the basis of his categorical (as opposed to modal) properties…”

Oxford ethicist Jeff McMahan objects to Kagan’s characterisation of personhood on the grounds that it could potentially privilege those with more cognitive functioning than those with less cognitive functioning:

 “…According to this understanding of modal personism, both non-persons that once had the potential to become persons and non-persons that actually have the potential to become persons are modal persons and presumptively have a higher moral status than non-persons that have never had the potential to become persons…It seems to imply, for example, that the interests of a mature human foetus matter more than the comparable interests of a severely cognitively impaired adult, provided that the latter’s actual psychological capacities are not significantly higher than those of the foetus…”

Singer himself argues that Kagan has misconstrued his argument against speciesism, and quotes passages from Animal Liberation that Kagan appears to have omitted from his discussion. Interestingly, Singer compares Kagan’s critique “to the view standardly put forward by proponents of a natural law ethic when defending their opposition to abortion and to euthanasia for profoundly intellectually disabled humans”. 




MORE ON THESE TOPICS | Animal rights, ethics, Peter Singer, speciesism

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The psychology of Trump voters


Why is Donald Trump faring so well in his campaign to be nominated as the Republic candidate for the US presidency? Commentators the world over are offering their theories, and strategists for other candidates are frantically trying to understand the attraction of the businessman turned presidential hopeful. Are his supporters making a rational choice based on an assessment of his economic or social policies? Or are they victims of their own emotions?

Oxford academic Neil Levy, who is also editor of the journal Neuroethics, regards them as irrational. He suggest that “prestige bias” is responsible for Trump’s popularity. Writing for the blog Practical Ethics, Levy states:

“…in addition to all these factors, a psychological mechanism may be playing a role in explaining Trump’s attractions to a substantial minority of voters. Trump is a very wealthy man. By one primary indicator, that means he is a successful person. We are often unable to judge accurately what makes a person successful. For this reason, we are disposed to imitate them… All kinds of things might play a role in causing success; sorting out what is cause and what is mere correlation is notoriously difficult. Better to imitate more widely: hence the evolution of our prestige bias.”

Levy suggests that his prestige bias theory explains why Trump has such a strong voter base among less educated Americans.

“It is worth noting that low information individuals – those with less capacity, due to limited resources or education – to identify what factors actually explain the success of individuals seem to be especially susceptible to the prestige bias…No doubt many factors, rational and irrational, explain why people consider voting for Trump. But the prestige bias may explain a great deal of his attractiveness.”

An interesting angle, though many beg to differ.

Writing for the Conversation, Drake University Law professor Anthony J. Gaughan argued that baser fears were driving Trump voters.

“none of the candidates peddle fear as well as Trump… He mixes anger, paranoia and xenophobia more skillfully than any modern presidential candidate…In short, the billionaire TV star is not running on a coherent set of political ideas. He is running on irrational fear, rage and prejudice.”



MORE ON THESE TOPICS | neuroethics, social priming, social psychology, US

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Fancy a black eye?


Alaskan criminal Jason Barnum had his right eyeball tattooed   

Some bioethicists have concerns about cosmetic, or aesthetic, surgery because patients are being pressured to conform to stereotypes of beauty.

But what if they are conforming to stereotypes of ugliness? Does that make an ethical difference?

Take eyeball tattooing, a fad which started with a US tattoo artist who goes by the name Luna Cobra. He injects pigment directly into the eyeball so it rests under the eye's thin top layer.

"If you want to amuse yourself by decorating your eyeball, why not do it?" he told the BBC. "I do a lot of things that look like tie-dye or 'cosmic space'. I think it brings a realm of fantasy into everyday life."

The government of the Australian state of New South Wales has just passed a law regulating the procedure, but it may eventually ban it altogether.

Mr Cobra says that his first clients wanted to have blue eyeballs like characters in the science fiction novel Dune. Black has become the colour du jour amongst gentlemen who wish to look dangerous. Mr Cobra tries to ensure that they give informed consent to the procedure:

"I tell them you're going to look frightening forever to the majority of people you encounter. You might find people have trouble connecting with you or looking at you because they can't follow your iris."

The American Optometric Association has flatly condemned the practice, claiming that it puts the patient at risk of infection, inflammation and blindness. "My advice is not to do it as there's not enough benefit to even warrant considering that risk of potential pain and loss of vision," Jeffrey Walline, of the Association, told the BBC.

The object of aesthetic surgery seems to be to allow the patient to blend into a crowd of beautiful people. The object of uglification “surgery” seems to be to scare the beautiful people away.

Even then there are problems with stereotyping. Last year Jason Barnum was sentenced in an Alaskan court for the attempted murder of a policeman. At his trial police testified that his face, and especially his black eyeball, showed that he had "decided a long time ago that his life was about being hostile to people".





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Canada takes another step towards its euthanasia law


A committee of the Canadian parliament has recommended that the federal government make doctor-assisted dying immediately available to all adults with "grievous and irremediable" medical conditions -- including mental illnesses -- and eventually allow “mature minors” to end their lives.

The committee released 21 recommendations on Thursday to help the government draft euthanasia legislation in accordance with the Supreme Court of Canada ruling in Carter v. Canada last year. Belgium’s permissive euthanasia regime appears to be the model for Canada’s new right-to-die law.

The committee says that new rules should be implemented in two stages. The first would apply immediately to those over 18 experiencing “intolerable” physical or mental suffering. The second stage -- “no later than three years after the first” would extend it to “competent mature minors.”

Patients must be fully assessed by two doctors, independent of each other, to ensure that they have capacity to provide informed consent.

The report recommends that physicians with conscientious objections should be compelled to find someone willing to do so. It also recommends that all publicly funded facilities – even faith-based institutions – be compelled to provide euthanasia and assisted suicide. This goes beyond recommendations made by others that objecting institutions should allow an external provider to perform the procedures on their premises. It also ignores the advice of the Canadian Medical Association, which told the Committee that euthanasia and assisted suicide could be provided without suppressing freedom of conscience by forcing objecting physicians to refer for the procedures.

The Supreme Court ruled last year last year that denying patients euthanasia or assisted suicide was a violation of the Canadian Charter of Rights and Freedoms. However, it did not settle the multiple complications involved. So it is possible to interpret the decision in a restrictive or permissive way. The committee has taken the permissive option, treating Carter as a floor, not a ceiling. This is clearest in its recommendation on euthanasia for mental illness, in which it cited the opinion of bioethicist Jocelyn Downie:

[M]ental illness should not be an exclusion criterion. It was not excluded by the Supreme Court, and not all individuals with mental illness are incompetent. Physicians already routinely determine whether someone is competent, even when they have a mental illness. Furthermore, the suffering that can accompany mental illness can be as excruciating as any suffering that can accompany physical illness. Finally, I would argue that excluding individuals on the basis of mental illness would violate the charter.

Similarly, the Court had said nothing about age limits. The committee adopted the most liberal view:

[Given] the obvious fact that minors can suffer as much as any adult, the Committee feels that it is difficult to justify an outright ban on access to MAID [medical assistance in dying] for minors. As with issues of mental health, by instituting appropriate safeguards, health care practitioners can be relied upon to identify appropriate cases for MAID and to refuse MAID to minors that do not satisfy the criteria.




MORE ON THESE TOPICS | Canada, euthanasia

This article is published by Michael Cook and BioEdge 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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Harvard’s dark past as the “brain trust” of American eugenics


Harvard University is the richest, most famous and oldest university in the US – and it won the Harvard-Yale game last year 38-19. But one distinction which it would rather forget is that it was the “brain trust” of American eugenics.

The author of a just-published study on the most famous law case involving eugenics, Adam Cohen, writes that “Harvard was more central to American eugenics than any other university.” (Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck, Penguin 2016.)

One of Harvard’s 19th century presidents, Charles William Eliot, was a vice president of the First International Eugenics Congress in 1912. In 1914 he helped to organise the First National Conference on Race Betterment in Battle Creek, Michigan.

Oliver Wendell Holmes Sr, dean of Harvard Medical School, popular writer, coiner of the term “Boston Brahmin” and father of the future Supreme Court justice, was one of the first Americans to promote eugenics.

A. Lawrence Lowell, president from 1909 to 1933, actively promoted eugenics. During his tenure, many leading academics promoted eugenic theories. Economist Frank W. Taussig believed that “Certain types of criminals and paupers breed only their kind, and society has a right and a duty to protect its members from the repeated burden of maintaining and guarding such parasites.” Botanist Edward M. East warned of the degeneration of the white race. He wrote emphatically: “the negro is inferior to the white.”

Psychologist Robert M. Yerkes developed an IQ test for the US Army which found that about half the men who took it were “feeble-minded”. This was “evidence” of the need for sterilizing the “unfit” and keeping out immigrants. Dudley Allen Sargent, who was head of physical education at Harvard in the early 1900s, was a firm believer in racial betterment.

Charles Benedict Davenport, a Harvard graduate and zoologist founded the Eugenics Record Office in Cold Spring Harbor, New York, in 1910, which became the chief promoter of eugenic sterilization laws. Lothrop Stoddard, a Harvard PhD, became the chief propagandist of American eugenics. His 1920 bestseller was titled The Rising Tide of Color Against White World Supremacy.

The jewel in the crown of Harvard eugenics is Oliver Wendell Holmes Jr, a former Harvard Law School professor and Harvard Overseer, and one of the most influential jurists ever to serve on the US Supreme Court. He wrote the 8-1 majority opinion in Buck v. Bell, which declared that eugenic sterilization was constitutional. “Three generations of imbeciles are enough,” he wrote about Carrie Buck, her mother and her infant daughter.

Cohen, a Harvard alumnus himself, concludes his article in the Harvard Gazette with a warning for the future.

There are also forward-looking reasons to revisit this dark moment in the University’s past. Biotechnical science has advanced to the brink of a new era of genetic possibilities. In the next few years, the headlines will be full of stories about gene-editing technology, genetic “solutions” for a variety of human afflictions and frailties, and even “designer babies.” Given that Harvard affiliates, again, will play a large role in all of these, it is important to contemplate how wrong so many people tied to the University got it the first time—and to think hard about how, this time, to get it right.

Disclosure: Michael Cook is also a Harvard alumnus and lived in Eliot House, named after Charles William Eliot. 




MORE ON THESE TOPICS | eugenics, Harvard, history of bioethics

This article is published by Michael Cook and BioEdge 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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Has the Zika virus changed Catholic thinking on contraception?


Is the Catholic Church back-pedalling on its ban on contraception? Some off-the-cuff remarks by Pope Francis have prompted much speculation in the media and amongst Catholics.  The Pope was speaking with journalists in an informal press conference as were flying back from his recent trip to Mexico.

A Spanish journalist brought up the topic of the Zika virus which is spreading rapidly in Brazil and other Latin American countries. In pregnant women  the virus has been linked to infants born with microcephaly – although this is still not proven. She asked whether Catholic women could consider abortion or avoiding pregnancy as the “lesser of two evils”.

Press conferences at 30,000 feet are not designed to showcase theological precision and subtle distinctions, so the Pope’s words were a bit jumbled and ambiguous. He responded:

On the “lesser evil”, avoiding pregnancy, we are speaking in terms of the conflict between the fifth and sixth commandment. Paul VI, a great man, in a difficult situation in Africa, permitted nuns to use contraceptives in cases of rape.

Journalists and commentators swiftly interpreted these words as signalling exceptions to an absolute ban on contraceptive if one or both of the spouses has been infected with the Zika virus. 

“Pope Francis shook up an already intense debate over birth control and abortion in Latin American countries where the Zika virus is causing a public health emergency by declaring on Thursday that contraceptives could be used to prevent the spread of Zika”, read a New York Times article by journalists Simon Romero and Jim Yardley.

Similarly, CNN journalists Daniel Bourke and Elizabeth Cohen reported, “Pope Francis suggested that contraceptives may be used to prevent the spread of the Zika virus, despite the church's longstanding ban on most forms of birth control”.

However, other observed that the Pope never mentioned contraception in his remarks, and that he has elsewhere made strong statements on the impermissibility of contraception.    

It appears that in fact, Paul VI did not approve a decision to give contraceptives to nuns in the Belgian Congo who were in danger of being raped in the mayhem of the early 1960s. He was not even the Pope at the time. However, a panel of distinguished theologians were asked for their opinion and their consensus was that contraceptives were permitted as a legitimate act of self-defence. History repeated itself in the 1990s when militias in the former Yugoslavia used mass rape as a weapon of war. A theologian in favour with John Paul II wrote an article defending the use of contraceptives.

But what interests the media is not the history of rape as a weapon of terror but the principle: does this mean that there are exceptions to an absolute ban on contraception? If so, where can you apply for one?

There is no authoritative word from any Pope on this tragic situation. But it appears that the Pope Francis and his predecessors look upon contraception in the face of mass rape as an act of self-defence, and not an act whose purpose is avoiding pregnancy. It is an entirely different moral question and it does not affect the ban affirmed once and for all by Paul VI in 1968 in a document called Humane Vitae. In the words of a Swiss Catholic theologian, Martin Rhonheimer:

Consequently, the use of contraceptive measures, such as an anovulatory pill or a device that impedes the penetration of sperm into the vagina, is not per se to be considered as a human act that falls under the moral norm prohibiting contraception. In fact, in the case of a preventative use in the face of the threat of rape, we are dealing with the use of a contraceptive measure (that is, one that prevents conception, in the physical sense) in an entirely different ethical context: not with the purpose of rendering infertile a freely desired and consented-to sexual act, thus eliminating the need for continence (given that pregnancy is undesired), but to defend oneself from the possible undesired and undesirable effects of an act imposed on oneself against one’s will.

“I don’t think what the pope said about contraception was all that different from what Benedict said about condoms and AIDS in 2010,” said Charles C. Camosy, an associate professor of theological and social ethics at Fordham University, and author of Beyond the Abortion Wars. “The pope’s manner, his affect, his being pastoral, that has been different in ways the previous two popes were not. But in terms of substance, there has not been much change. The church is pretty set on its positions.”

In the interview the Pope stated emphatically that abortion is out of the question:

“Abortion is not the lesser of two evils. It is a crime. It is to kill someone in order to save another. This is what the Mafia does. It is a crime, an absolute evil.”

No ambiguity there. 





This article is published by Xavier Symons and BioEdge 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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Interview: Carrie D. Wolinetz of the NIH on gene editing


New gene editing technologies like the CRISPR-Cas9 technique hold great promise for medicine and the biological sciences. Some researchers say we may soon be able to eradicate infectious diseases like malaria, and edit HIV out of the genome of AIDS sufferers. Others believe we can use gene editing techniques to make animal organs suitable for human transplants. 

Yet there are many ethical questions attentant to research in the area, and ethicists are struggling to catch up with scientists eagerly refining the new gene editing techiques. Recently I spoke with Dr. Carrie D. Wolinetz, assistant director for Science Policy at the National Institutes of Health, about various concerns raised by bioethicists about gene editing.

Dr. Wolinetz worked on biomedical research policy issues as the Deputy Director for Federal Affairs at the Association of American Universities (AAU) and the Director of Scientific Affairs and Public Relations at the Federation of American Societies for Experimental Biology (FASEB). She also served as the President of United for Medical Research, a leading NIH advocacy coalition. Outside of NIH, Dr. Wolinetz teaches as an Adjunct Assistant Professor at Georgetown University in the School of Foreign Service’s program on Science, Technology & International Affairs.

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Xavier Symons: The NIH is funding research into gene editing, but has stopped short of assisting projects involving human embryos. Why?

Carrie D. Wolinetz: On April 29, 2015, the NIH Director, Dr. Collins, issued a statement that “NIH will not fund any use of gene-editing technologies in human embryos.”  In this statement, the Director noted the great potential that genomic editing technologies have for advancing the understanding of gene function and for non-heritable, therapeutic applications, including several human gene therapy trials studying the use of gene editing in somatic cells for HIV-1, β thalassemia, and hemophilia. 

However, the use of these technologies to modify the human germline raises complex issues, and while recent technological advances such as CRISPR-Cas9 have increased the technical feasibility, safety and ethical concerns have yet to be allayed. Moreover, as referenced in the statement cited above, there are some relevant prohibitions, including a prohibition against federal funds being used for the creation of human embryos for research purposes or for research in which human embryos are destroyed, a prohibition on FDA review of research in which a human embryos is created or modified to include a heritable genetic modification, and policy that the NIH Recombinant DNA Advisory Committee will not consider germline alteration proposals.  

Across the Atlantic, in the United Kingdom, leading researchers are broadly in favor of editing the human genome, as long as it is done prudently. Won’t the United States get left behind?  

International competitiveness is only one consideration in thinking about whether NIH should fund human germline editing.  Unlike non-heritable human gene editing, which the NIH continues to support, editing of embryos raises many scientific, safety, ethical, societal, and policy issues that need to be sufficiently considered and addressed.  This is a topic of great international discussion. 

For instance, last May, the US National Academies of Science and Medicine, the Royal Society, and Chinese Academy of Science initiated a study to guide decision making about human gene editing and, in December, they convened an international summit to explore associated scientific, ethical, and governance issues.  Findings from these proceedings are expected in late spring. 

In a recent NIH statement Dr. Francis Collins alluded to "serious and unquantifiable safety issues" involved in research on human embryos. What are they?

A major concern with the genetic editing techniques is off-target effects of double stranded breaks that could inactivate essential genes, activate oncogenes, or cause chromosomal rearrangements.    For work with embryos, there is also the risk of mosaicism if the alterations do not end up in all the cells of the organism.  There are likely to be unknown risks associated with the rapidly dividing and differentiating cells of the embryo.  In the first report of gene editing in non-viable embryos (Liang, P., et al., (2015) CRISPR/Cas9-mediated gene editing in human tripronuclear zygotes. Protein & Cell 6:363-372.), the efficiency of the targeted gene repair was low, off-target cleavage occurred and the edited embryos were genetic mosaics. 

Some scientists complain that restricting research into reproductive applications because it is premature and dangerous will ensure that it remains forever premature and dangerous. How would you respond?

The NIH has supported and will continue to support, research on genetic editing technologies, approaches to improve the safety and efficacy of these technologies, basic research into gene functions, development of disease models, and clinical research on somatic gene therapy applications. Progress is likely to be made through such research while the scientific community, regulators, ethicists, and the public grapple with the issues that should be resolved before reproductive applications.  

Dr. Collins has also discussed the "ethical issues presented by altering the germline in a way that affects the next generation without their consent". What is wrong with seeking proxy consent for these embryos from parents?

The question of whether it is appropriate for parents to give consent on behalf of future children for embryonic modifications is a highly discussed issue.  Dr. Collins has expressed concerns about the lack of consent from not only the child but all subsequent generations for an intervention with great uncertainty about the risks of harms that may not be detected until birth, adulthood, or later generations. 

CRISPR obviously makes “designer babies” possible. Do you think that this will eventually become legal in the United States?

Genomic editing is a promising tool for the gene therapy field, which is in the early phase of attempting to correct single gene mutations.  More complex interventions would require editing many genes simultaneously, and the effort would be obviously fraught with numerous technological, safety, ethical, and societal concerns.  In addition to the increased safety challenges, there is still the need for greater understanding of which genes are involved in specific traits, their complex interactions, and the role of the environment.

CRISPR is a cheaper, quicker, more accurate and more accessible way to edit genetic code -- which means that eventually hobbyists could set up labs in their garages. Do you foresee dangers with the “democratization” of genetic engineering?

The US Government has already considered some of the implications of the growing accessibility of life sciences technologies to practitioners working outside of traditional institutional environments (so called DIY biologists) and, in fact, issued a report in 2011 that highlighted the importance of outreach and education to the amateur biologist community to promote responsible research from both the biosafety and biosecurity perspective. 

The hobbyist community is still relatively small, and while the field of amateur biology is in its formative stages, we have a unique opportunity to foster education that includes biosafety and biosecurity content and lays the groundwork for developing a culture of responsible use of life science technologies.

Does the world need an international agreement on a bright ethical line on genome editing? 

While it may be difficult to identify a bright line for many of the ethical concerns, the organizing committee at the International Summit did begin to address these issues in its statement.  The organizing committee concluded that basic and preclinical research could proceed – subject to appropriate oversight – but noted that “if early human embryos or germline cells underdo gene editing, the modified cells should not be used to establish a pregnancy.”  Regarding the clinical use of human gene editing, the organizing committee supported gene therapy applications involving somatic cells; however, they concluded that at this time, “it would be irresponsible to proceed with any clinical use germline editing.”

Another area of great agreement the need for an international forum for these issues.  At the International Summit, the organizing committee recommended that the U.S. National Academy of Sciences and U.S. National Academy of Medicine; the Royal Society; and the Chinese Academy of Sciences create “an ongoing international forum to discuss potential clinical uses of gene editing; help inform decisions by national policymakers and others; formulate recommendations and guidelines; and promote coordination among nations. 

The forum should be inclusive among nations and engage a wide range of perspectives and expertise – including from biomedical scientists, social scientists, ethicists, health care providers, patients and their families, people with disabilities, policymakers, regulators, research funders, faith leaders, public interest advocates, industry representatives, and members of the general public.” 

This type of engagement should be very useful as the field moves forward with the many exciting applications that now seem possible. 




MORE ON THESE TOPICS | CRISPR, gene editing, interviews, NIH

This article is published by Carrie D. Wolinetz and Xavier Symons and BioEdge 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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Oregon releases its 2015 ‘death with dignity’ stats


Oregon is the model for assisted suicide legislation throughout the United States, so its annual “Death with Dignity” report for 2015 deserves close scrutiny.

Since the law was passed in 1997, a total of 1,545 people have had prescriptions written under the DWDA, and 991 patients have died from ingesting the medications.

The figures are not as straightforward as they might seem. During 2015, 218 people received prescriptions for lethal medications, but only 132 people died. Why the difference? Many people keep the medication on hand and wait until they are ready to use it – which could be in the next calendar year. Some die before using it; some disappear from the official statistics. So, of the 218, 125 used the medication and died; 50 died before they used it; 5 died and Oregon does not know whether or not they used it; and for 38 people (17%), there is no information about whether they used it or whether they are alive or dead.  

Oregon is not far off the mean, but its population is older, whiter, more likely to live alone, and better educated than the US average. Those who died were even whiter and even better-educated than the Oregon average.

Although uncontrolled pain is often seen as sufficient justification for legalised assisted suicide, relatively few people even mentioned it. The three main reasons were “less able to engage in activities making life enjoyable” (96%); “losing autonomy” (92%); and “loss of dignity” (75%).

“Inadequate pain control or concern about it” was mentioned by 28.7% but the statistics do not indicate how many actually had actually experienced unrelieved pain.

Statistics about the dying process are very skimpy. Brittany Maynard, who must be among the 132 people in Oregon’s figures, died quickly and peacefully, surrounded by her family and friends. But it is not at all clear whether or not this is typical. For about 80% of the 132 deaths there is no information on how long it took or whether there were difficulties. In 2015, there is information on only 27 deaths; in 4 of these there were complications such as regurgitation or seizures.

It took patients between 5 minutes and 34 hours (sic, hours) to die – but there are figures only for 25 patients. In past years, it has taken up to 104 hours (ie, more than 4 days) to die.

One curious detail from the statistics: since 1997, 6 patients have regained consciousness after taking a lethal dose of medication. They have not been recorded in the statistics as assisted suicides. They probably died of their underlying complications – but this cannot be verified. Perhaps they are alive today. 




MORE ON THESE TOPICS | assisted suicide, Oregon

This article is published by Michael Cook and BioEdge 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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China turns blind eye to surrogacy


China’s one-child policy officially came to an end on January 1. The government is desperate to increase the birth rate in the face of an ageing population. Less well-known is the reversal of a plan to ban surrogacy.

Large families have become a status symbol in some circles in China. In 2011, a photo of eight toddlers went viral on social media. A wealthy couple resorted to IVF and found that all eight of their embryos were viable. So the wife had twins and two surrogate mothers had triplets. The couple hired 11 nannies to look after their offspring.

Although the government frowned on this display of contempt for its restrictive policies, there was no law to ban it entirely.

“Some members of the Standing Committee [of the People’s National Congress] argued that surrogacy cannot be totally forbidden,” said Zhang Chunsheng, head of legal affairs at the National Health and Family Planning Commission. And even if there was a law banning it, "rich people would still be able to go abroad to countries where surrogacy is allowed.”

The number of surrogate pregnancies in China is unknown, but in 2014, the New York Times estimated that it was only about 10,000 – although many couples go overseas to organise a child.

One argument for a more permissive attitude towards surrogacy is concern over rising infertility rates. Some desperate parents want the option to have their own child. A ban would only support China’s huge black market in surrogacy.

Besides, according to the China Population Association, 12.5% of women of child-bearing age were infertile in 2012, up from 3% in 2002. The reasons for this are obscure, but doctors believe that pollution, obesity,  and abortion are amongst the contributing factors, along with deferred marriage and childbirth.

“The two-child policy could create greater demand from families to turn to surrogacy if they cannot have children themselves,” Joshua Freedman, research manager at consulting firm China Policy, said. “Legislators seem more concerned with dealing first with the two-child policy and pushing questions about surrogacy to a later date after further discussion.”




MORE ON THESE TOPICS | China, surrogacy

This article is published by Michael Cook and BioEdge 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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Indian Medical Association backs pre-natal sex tests


India’s gender imbalance is possibly the worst in the world because doctors routinely abort unborn females after an ultrasound test. In 1996 the Indian government banned prenatal sex determination.

Twenty years later the slide in the sex ratio has not stopped. According to the 2011 Census the child sex ratio fell from 927 girls for 1000 boys in 2001 to 919 girls. These are the worst figures since 1961.

So the Indian Medical Association has come up with a better idea. Instead of banning prenatal sex tests, the government should make them compulsory.

The idea was first mooted by Maneka Gandhi, the Indian Women and Child Development Minister. She proposed that each pregnancy should be registered and the sex disclosed to the parents. If a girl, the pregnancy should be tracked and recorded.

A great idea, says the secretary general of the Indian Medical Association, Dr K.K. Aggarwal. “Such a step, if taken, will help institutionalise the safety of the girl foetus, which, in several parts of the country, is aborted because of societal obligations. Not only will it help document women with girl children in a better way, but would also help in fixing responsibility in cases requiring legal interference.”

Not all doctors were thrilled by the proposal.

"This is the strangest, most bizarre idea I have ever heard in my life," said Puneet Bedi, a New Delhi gynaecologist, who has been campaigning against female foeticide for nearly three decades. Couples could used abortion drugs and visit the doctor afterwards. "At this point, doctors would not be able to deny treatment to the woman and the abortion would be a fait accompli," said Dr Bedi. "This would be a dangerous move and female foeticide will spiral upwards - all blame shifts to parents, with doctors escaping blame."

Others doctors warn that tracking each of India’s 27 million annual pregnancies would be a bureaucratic nightmare. Mandatory disclosure would also transfer responsibility for female foeticide to the pregnant woman, allowing doctors to evade responsibility.

The IMA’s support for the idea seems to stem from despair at the failure of anti-gendercide campaigns. “There are two ways the administration can check and stop female foeticide,” writes Dr Aggarwal. “First is to strengthen and properly implement the existing laws. Second is to spread awareness in society to end discrimination. Till the time society does not put an end to this discrimination, law is our only hope. 




MORE ON THESE TOPICS | gendercide, India, sex ratio, sex selection

This article is published by Michael Cook and BioEdge 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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IVF an “evolutionary experiment” – genetics expert


A leading evolutionary biologist has labelled IVF an “evolutionary experiment” that may have serious effects on children in later life. 

Speaking at the American Association for the Advancement of Science annual meeting in Washington DC, Dr Pascal Gagneux of University of California, San Diego said that the long-term effects of IVF are still unclear.

"…We're engaging in an evolutionary experiment ... I would compare it to high fructose corn syrup and fast food in the US. It took 50 years; it was fantastic, you got bigger and healthier, and now the US are the first generation that are shorter and heavier and die younger. But it took 50 years…”

He noted that the oldest IVF child in the world is only 39.

According to Dr Gagneux some possible long-term side-effects are diabetes, high blood pressure and even premature death. He cited a study in which a large group of IVF and naturally conceived children were taken to a high altitude, low oxygen environment that mimicked the effects of ageing. 

Heart and artery malfunction was reported "very convincingly" in the assisted reproduction children, including those with brothers and sisters who were conceived naturally, Dr Gagneux said.

A number of IVF specialists have responded to Dr. Gagneux’s remarks, saying he lacked evidence for his bold claims.  Allan Pacey, Professor of Andrology at the University of Sheffield, said: “There is a wealth of epidemiological evidence to suggest that the babies born through IVF technologies are on the whole as healthy as their naturally conceived counterparts.

“Where some differences have been observed, these are largely explained by genetic defects in the sperm of the father rather than the fact that fertilisation and embryo development occurred outside of the body. I don’t share the concerns raised by Dr Gagneux. If we were always led by the precautionary principle, medicine would never make any advances.”



MORE ON THESE TOPICS | Australia, IVF

This article is published by Xavier Symons and BioEdge 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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Personhood and moral status: the debate continues


Personhood debates have dominated much of the bioethics discourse for the past few decades, yet little consensus has been reached. Two insightful articles recently published online in the Journal of Medicine and Philosophy may provide much needed clarity on the issues involved.

In an essay on ‘moral status questions’ about embryos, ethicist Shane Maxwell Wilkins of Fordham University debunks a series of criticisms made against proponents of the inherent moral status of embryos.

Ethicists like Robert P. George and Christopher F. Tollefsen appear to have been misrepresented by a number of their most vocal critics. As Wilkins writes, George and Tollefsen are often criticised for making an ostensibly illicit inference from the biological peculiarity of embryos to the morally unique status of embryonic cells. This, however, is a caricature of their position:

“[George and Tollefsen] deploy the concept of an ‘active disposition’… If an active disposition to develop into an adult human being is morally salient, then it makes sense to say that the one-celled embryo has moral status, whereas every individual cell of an adult human being in isolation lacks it.”

Wikins also refutes the view that embryos are not sufficiently distinct from a mother’s uterus to be considered independent entities. Wilkins distinguishes causal independence from ontological independence, saying we don’t need the former to prove that the child is a distinct entity. “[all that the argument] requires is the much weaker claim that the embryo is ontologically independent of the mother.”

In a similar essay to Wilkins, Andrew McGee of Queensland University of Technology’s Centre for Ethics and Health Law has critiqued arguments advanced by Jeff McMahan and Derek Parfit, which try to make a case for the non-personhood of embryos and patients in a persistent vegetative state. 

McMahan offers two key arguments for the non-personhood of embryonic and PVS humans.

The first involves the rare case of dicephalic twins who share almost all vital organs, but have distinct brains and assumedly distinct mental lives. McMahan says that cases like these are good reason to locate personhood not in the body but in consciousness. He then proceeds to use this as evidence to suggest that embryos and vegetative patients are not persons, but rather ‘human organisms’ sans the moral standing of persons.

Yet as McGee points out, McMahan does little to justify his conclusion that the twins are somehow one human organism. There is a good argument to be made to say they are actually two organisms despite being closely connected (or alternatively, there may be just one organism with two heads).

McMahan’s second argument relies on a hypothetical thought experiment about twins, of whom one has his brain transplanted into the corpse of the other (yes, it is rather crazy). McMahon claims that the twin who receives the new body is still the same person, despite losing his old body. And this, he suggests, is evidence that it is not a person that is killed in early term abortions or the withdrawal of a feeding tube from a PVS patient; it is rather a mere “human organism”.

McGee takes issue with McMahan on this as well. As McGee states, in ordinary circumstances the word “person” has built into it assumptions about the centrality of bodily continuity to personal identity.

 “our current concepts of person and personal identity include both bodily identity and psychological continuity…McMahan leaves this criterion [i.e. bodily identity] out of his account, not realizing that he has subtly dropped one of our current criteria for the identity and identification of persons”.

Person in the way we use the word it is not just about psychological continuity, and so the transplant argument doesn't get off the ground. 





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Doctors risk jail to uphold professional ethics


Brisbane (Australia) doctors are refusing to release the baby of an asylum seeker couple from hospital until a “suitable home environment” has been found for her.

The baby, a one-year-old girl named Asha, suffered mild burns while being detained on an off-shore processing centre in Nauru. Doctors have treated her, but say it would be “unethical” to release her until an alternative to detention is found.

Speaking on behalf of the clinicians, Doctors for Refugees spokesman Richard Kidd said the doctors were concerned about the child’s wellbeing. "There's overwhelming evidence that babies and children being put into detention does them great harm," he said. "So for doctors and nurses we just can't send children from hospital into a place where we know they're going to be harmed."

It is unclear if and when the Australian government will forcibly remove the girl from the hospital. In response to a High Court proceeding filed by the Australian Human Rights Law Centre, the government has agreed to give lawyers and family 72-hours notice before deporting the girl. 




MORE ON THESE TOPICS | Australia, professional ethics

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Russia denies responsibility for strike on MSF hospital


Russia has rejected allegations that it bombed a Medecins Sans Frontieres hospital in northern Syria last Monday. At least 50 people were killed during the strike, which hit three hospitals and a school.

MSF stated on its website that at least nine staff members were killed when missiles hit the organization’s hospital in the Idlib province. The other two hospitals affected were not affiliated with MSF. 

"This attack can only be considered deliberate. It was probably carried out by the Syrian government-led coalition that is predominantly active in the region," MSF international president Dr. Joanne Liu told a news briefing on Thursday.

Top Kremlin officials have denied responsibility.  “Once again, we categorically dismiss these statements and consider them to be unacceptable,” Dmitry Peskov, the Kremlin spokesman, said Tuesday in Moscow. “Especially because those making these statements are unable to prove their allegations in any way.”

MSF will no longer share the co-ordinates of its hospitals with Russian and Syrian authorities. The organisation has called for an independent probe into the air strikes. 




MORE ON THESE TOPICS | Medecins Sans Frontieres, Russia, war, war crimes

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World Medical Association to revise ‘Hippocratic Oath”


It’s time to update the modern Hippocratic Oath, says the World Medical Association, a global organization of physicians which currently represents 112 national medical associations. The oath – which, somewhat confusingly, is called the Declaration of Geneva – was drafted 67 years ago, as a response to atrocities committed by Nazi doctors before and during World War II. Since then, only minor revisions have been made.

The WMA says that the ethical obligations of doctors may need to be redrafted to reflect social changes. “In recent decades, respect for patient self-determination has been established as one of the most important principles of medical ethics,” says the WMA. “However, it is not mentioned in the Declaration of Geneva.” The oath should also enjoin “mutual respect between students and teachers”, not just of students for their teachers.

The revision is to be entrusted to an international working group. There have been so many controversial issues in the practice of medicine in the past 70 years – abortion, euthanasia, cosmetic surgery, transgender surgery, on-line medical databases, genetic engineering, assisted reproduction, conscientious objection, to name a few. The working group has its work cut out.

Here is the current text of the Declaration of Geneva.

AT THE TIME OF BEING ADMITTED AS A MEMBER OF THE MEDICAL PROFESSION:

I SOLEMNLY PLEDGE to consecrate my life to the service of humanity;

I WILL GIVE to my teachers the respect and gratitude that is their due;

I WILL PRACTISE my profession with conscience and dignity;

THE HEALTH OF MY PATIENT will be my first consideration;

I WILL RESPECT the secrets that are confided in me, even after the patient has died;

I WILL MAINTAIN by all the means in my power, the honour and the noble traditions of the medical profession;

MY COLLEAGUES will be my sisters and brothers;

I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing or any other factor to intervene between my duty and my patient;

I WILL MAINTAIN the utmost respect for human life;

I WILL NOT USE my medical knowledge to violate human rights and civil liberties, even under threat;

I MAKE THESE PROMISES solemnly, freely and upon my honour.





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Would Jenner’s smallpox experiment pass a research ethics committee?


You have to pity Edward Jenner. He develops a vaccination for smallpox, saves countless lives in the process and eradicates one of the greatest scourges of humanity, yet is often accused of conducting unethical experiments.

The case seems indisputable. On May 14, 1796 Jenner vaccinated James Phipps, the eight-year-old son of his gardener, with material obtained from a milkmaid who had cowpox. A few weeks later he deliberately infected Phipps with smallpox to see if he would develop the disease. What could be more unethical than exposing a young boy to one of the most deadly diseases in the world simply to see if an unknown procedure would work?

But the story is more complex than this simple narrative suggests. In the 18th century, doctors carried out a procedure known as variolation to protect people from smallpox. This involved exposing people to a small dose of smallpox in order to give them a mild form of the disease, thereby protecting them from the full effects of the disease. It was not a risk-free procedure, and people often died as a result. However, given the terrible mortality of smallpox this was seen to be worthwhile.

Variolation had a long history in China, the Middle East and Africa. Its history in Britain was started by Lady Mary Wortley Montagu, one of the most colourful characters in immunology. She originally eloped with her husband, and then went with him to Constantinople where he was ambassador.

Wortley Montagu wrote extensively about Ottoman life, wore Turkish dress, visited harems and Turkish baths and disguised herself as a man in order to get into the Hagia Sophia mosque. While in Constantinople, she came across the practice of variolation and, in 1718, had her young son Edward variolated on the wrist with a “blunt and rusty needle”.

Returning to England she resumed life in society. She was a friend of the poet, Alexander Pope, who admired her intelligence and wit and was probably in love with her. In 1721 a smallpox epidemic was threatening Britain, and she persuaded Charles Maitland, her doctor in Constantinople, to variolate her daughter.

Wortley Montagu was a friend of Caroline, the Princess of Wales, who was also worried about the safety of her children. It’s thought that this was what prompted the interest of Britain’s royal family in variolation.

Sir Hans Sloane (later founder of the British Museum) organised “The Royal Experiment” in 1721, in which six condemned prisoners from Newgate Prison were variolated. They were then pardoned and released.

You might question several aspects of the ethics of this experiment. To see if this protected them from smallpox, Sloane paid for one of the pardoned female convicts to sleep in the same bed as a ten-year-old boy with smallpox for six weeks. Of course, nowadays this would raise safeguarding as well as ethical issues. As a result of the experiment, Princess Caroline arranged for orphan children in a local parish to be variolated, and, when these children also came to no harm, two of the royal princesses were treated.

This new procedure was very controversial. A proportion of those treated died as a result. It was argued from church pulpits that the practice was both dangerous and sinful as only God had the power to inflict disease. But, over the century, it became a relatively routine approach to protecting people from smallpox.

There was a belief in the countryside that people who looked after cows and had been infected with cowpox could not catch smallpox (milkmaids were said to have attractive non-pockmarked skin). In 1774, Benjamin Jesty deliberately infected his wife and sons with cowpox in an attempt to protect them from smallpox. What Jenner did was to take this a stage further, to vaccinate his patient with cowpox (the Latin word “vaccinus” means “from cows”), and then see if that stopped the symptoms that occurred after a person was variolated with smallpox.

So, in light of this story, was Jenner’s experiment on the Phipps lad unethical?

Well, there are certainly things that we might question. Experimenting on the son of his gardener raises concerns about coercion and consent. We might question aspects of the scientific design given that there was only one subject. But to the central charge – that he deliberately exposed a young child to smallpox solely to see if his vaccination procedure was effective – I would argue that he is not guilty. What he did do was variolate the child, a standard medical treatment at the time, known to be effective against smallpox. Jenner routinely performed variolation on his patients, and had been variolated himself. He took advantage of this procedure to demonstrate that vaccination really did protect from smallpox – an experiment that changed our world.

Andrew George, Deputy Vice-Chancellor, Brunel University London. This article was originally published on The Conversation. Read the original article.





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Dutch psychiatric patients may get euthanasia too easily, says US study


A new study in the journal JAMA Psychiatry has presented an alarming picture of physician evaluation of euthanasia requests in the Netherlands. The article, lead authored by National Institutes of Health (NIH) psychiatrist Dr. Scott Y. H. Kim, examined 66 psychiatric euthansia and assisted suicide (EAS) case summaries made available online by the Dutch regional euthanasia review committees.

The authors found that 56% of patients reported having refused at least one kind of treatment, and of those, almost half refused because of ‘lack of motivation’.

The study also confirmed the findings of previous surveys that loneliness is a key driver behind requests by those suffering from mental illness. Of the 66 patients surveyed, 37 identified  loneliness or social isolation as a motivation behind their request. One elderly patient – both mentally and physically healthy –gave no other reason for euthanasia other than loneliness after her husband had passed away. Many of the patients used what the study called a “mobile-end-of life clinic” – a doctor and nurse funded by a local euthanasia advocacy group. 

Dutch women with a psychiatric illness were more than twice as likely to be euthanased than men. Of the 66, 70% were women; 32% were 70 or older; 44% were between 50 and 70; and 24% were between 30 and 50. However, information about the patients in the reports was scanty. They contained little social history, not even their family structures. Marital status, occupation, education level, race/ethnicity, and nationality were rarely mentioned.

There was a total of 110 psychiatric EAS cases between 2011 and 2014, but the regional review committees uncovered only one patient for whom due care criteria were not met. This was a woman  in her 80s with chronic depression who sought help from a mobile end-of-life clinic which sends a doctor to patients whose own doctor has refused to euthanase them.

“The clinic physician met with her 2 times (the first time was 3 weeks before her death), and the patient was not alone on both occasions, with family members present. The physician was not a psychiatrist, did not consult psychiatrists, was unaware of the Dutch Psychiatric Association Guidelines, and yet ‘had not a single doubt’ about the patient’s prognosis.”

In another case, the regional review committee was merely critical. “The patient had attempted suicide, which led to a broken thigh. The patient refused all treatments and requested EAS. The RTE was ‘puzzled’ by the fact that this physician ‘complied with the patient’s [EAS] wish almost at once”.

The statistics suggest that patients “shop” for compliant doctors. Among them, 32% had been refused EAS at some point but physicians later changed their mind about three of them and performed EAS, while 27% had physicians who were new to them perform the EAS. In 14 of the 66 cases studied, the new physician was affiliated with the mobile euthanasia practice.

The authors hint that regulation may be lax. "The retrospective oversight system in the Netherlands generally defers to the judgments of the physicians who perform and report EAS. Whether the system provides sufficient regulatory oversight remains an open question that will require further study," they conclude.

American specialists expressed strong reservations about the way that the Dutch handle psychiatric patients who want to die.

“The criteria in the Netherlands essentially require that the person’s disorder be intractable and untreatable, and this study shows that evaluating each of those elements turns out to be problematic,” said Dr. Paul S. Appelbaum, a professor of psychiatry, medicine and law at Columbia University, told the New York Times.

Dr. Appelbaum continued, “the idea that people are leaving their treating physician and going to a clinic that exists solely for this purpose, and being evaluated not by a psychiatrist but by someone else who has to make these very difficult decisions about levels of suffering and disease — it seems to me like the worst possible way of implementing this process.”




MORE ON THESE TOPICS | euthanasia, existential suffering, Netherlands, PAS

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A Dutch report applies the brakes on ‘completed life’ euthanasia


Although euthanasia in the Netherlands is often regarded as an unstoppable juggernaut, a government commission has suggested that the brakes be applied.

Activists have been pressing for euthanasia on the basis of “completed life”, that is, for people who have simply lost interest in living, regardless of age or state of health. They also wanted the government to approve a “peaceful pill” which would allow people to kill themselves without the help of a doctor.

However, after a lengthy study, the Schnabel Commission has declared that expanding the boundary of euthanasia is not advisable. It believes that current legislation already provides for cases of “completed life”, which are equivalent to the symptoms of old age, in any case. It is also important for doctors to be involved in the euthanasia process. It is not a job for people without medical qualifications. “In the light of the seriousness and the irrevocability of the decision to end a life, take extreme care is necessary,” says the report.

The Dutch right-to-die association (NVVE) was surprised by the conservatism of the government’s response.

A recent survey of the NVVE among 20 members who have a complete life, showed that they just deliberately have chosen solitude. It is a sign of letting go of life associated with the aging process and the longing for death. It is hard to imagine and accept that there comes a time when life is over. But by not recognizing the demand for care of these people, they are not being taken seriously.

The youth wings of several political parties also protested, with the support of the NVVE. “This opinion is a setback in the struggle for self-determination," they said.




MORE ON THESE TOPICS | completed life, euthanasia, Netherlands

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Celebrating 15 years of Dutch euthanasia


Beginning today, the Dutch right-to-die association NVVE is celebrating Euthanasia Week with a  selection of documentary films and youth outreach. The festivities mark the 15th year of legal euthanasia in the Netherlands -- although the NVVE seems to be jumping the gun, as the law came into effect on April 1, 2002. 

Currently, more than 5,300 people die annually in the Netherlands after euthanasia.

Activities for young people organised by NVVE Jongeren, the youth wing of NVVE,  are a significant part of the program. There is a film about a 27-year-old woman who chooses to die. Another feature is Café Doodnormaal  (Dead Normal Café), a monthly discussion group about end-of-life issues and autonomy for young people.

NVVE provides information, consultation and education about euthanasia and assisted suicide in the Netherlands. Its motto is: “A dignified life deserves a dignified death”. It claims to have 161,000 members and has a reputation for innovation in end-of-life options. In 2012, for instance, it launched a mobile van service so that people whose own doctors had refused to euthanase them could get a more compliant doctor. 

Another event organised by the NVVE is a three-day international conference in May -- Euthanasia 2016: professional challenges. On the program are discussions on euthanasing couples, self-euthanasia, euthanasia for people suffering from dementia, and scrutiny and accountability. 




MORE ON THESE TOPICS | euthanasia, Netherlands, NVVE

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Canada’s ‘euthanasia courts’


Because Canada’s federal government still has not passed euthanasia legislation, the Supreme Court has authorised provincial courts to arbitrate on requests for euthanasia.

In a ruling which also ratified Quebec’s new euthanasia laws, the court said that people outside Quebec “who wish to exercise their rights" to doctor-assisted death may apply to their provincial superior court for judicial authorization.

 “Those who wish to seek assistance from a physician in accordance with the criteria set out in … our reasons in Carter may apply to the superior court of their jurisdiction for relief during the extended period of suspension,” the court said Friday. “Requiring judicial authorization during that interim period ensures compliance with the rule of law and provides an effective safeguard against potential risks to vulnerable people.”

It is unclear how exactly the courts will judge the applications.

Some were pleased with the decision, saying it was time that certain people under particular circumstances were given a say in when and how their lives should end.

Conservative bioethicist Wesley Smith saw the decision as an adieu to the Canada of yesteryear:

“This is just stunning. A judge is going to dispassionately review an application to be killed, and then, rule thumbs up or down…Poor Canada. We hardly knew ye.” 



MORE ON THESE TOPICS | Canada, euthanasia, law

This article is published by Xavier Symons and BioEdge 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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IVF audit in Australia


An Australian consumer watchdog is conducting a wide-ranging investigation into the country’s 34 IVF clinics. Several complaints have been made to the Australian Competition and Consumer Commission (ACCC) about the lack of transparency of IVF success rates, and the practice of making vague statements about a clinic’s own success rates.

The ACCC has started a major compliance exercise looking at how Australia's 34 IVF clinics present their success rates.

"We certainly have found instances of information being put on the websites and being given to consumers that we think is misleading," ACCC chairman Rod Sims told the ABC’s  7.30 Report.

One clinic– ‘Genea’ – has flouted the Fertility Society of Australia guidelines not to compare their success rates with the national average, advertising on its website "an almost 40 per cent greater chance of taking home a baby”. Experts argue the claim doesn’t reflect the complexity of the fertility problems treated by other clinics.

Meanwhile, a new South African egg donation agency, Known Egg Donors, has started flying women to Australia to give their eggs to Australian clinics. Australian IVF patients have paid $13,600 to the agency for fresh eggs from the donors, on top of their other IVF costs. 




MORE ON THESE TOPICS | Australia, commercialization, IVF

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Should we get rid of race in genetics?


Racial categories have long been used in genetics to aid research on health and development. Yet recently academics have been discouraging the use of such taxonomies, arguing that they are pragmatically unhelpful and, at times, morally objectionable.

One of the strongest statements yet came in an article published in Science last week, entitled ‘Taking race out of human genetics’. Michael Yudell of Drexel University and three of his colleagues sounded alarm bells about the continuing (and, on some measures, increasing) use of racial categories in genetic research: 

“We believe the use of biological concepts of race in human genetic research—so disputed and so mired in confusion—is problematic at best and harmful at worst. It is time for biologists to find a better way.”

According to the authors, “there have been no systematic attempts to address [race-related issues in research] and the situation has worsened with the rise of large-scale genetic surveys that use race as a tool to stratify these data.”

They called on the U.S. National Academies of Sciences, Engineering, and Medicine to convene a panel of experts “ to recommend ways for research into human biological diversity to move past the use of race as a tool for classification in both laboratory and clinical research”.

In an interview with NPR, Sarah Tishkoff and Dorothy Roberts – academics from the University of Pennsylvania and co-authors of the article – discussed the issues posed by continuing use of racial categories.

According to Roberts, a sociologist, “[race] leads researchers down the wrong path and leads to harmful results for patients. For example, black patients who have the symptoms of cystic fibrosis aren't diagnosed because doctors see it as a white disease.”

Roberts also believes there are historical reasons for abandoning racial categories:

“There is a long history of justifying the subordination of different groups and social groupings based on myths about their biologic or genetic predispositions. It's not only that there's scientific evidence that humans aren't divided into discrete biological categories we'd call races. But there's also evidence of the harm these biological meanings of race have caused for centuries.”



MORE ON THESE TOPICS | eugenics, genetics, racism

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Cruelty at home and abroad


Here’s a potato so hot that even naming it sparks controversy. For the purposes of discussion, let’s call it female genital mutilation (FGM), the name the World Health Organization favours. But it is also called female genital cutting or female circumcision. It means that a girl’s or (less commonly) a woman’s, genitals are cut in varying degrees of severity in accordance with traditional practices in Africa and the Middle East.

As Oxford bioethicist Brian Earp points out in a paper in the Kennedy Institute of Ethics Journal (in press) there may be a double standard in the discussion of this practice, which is almost universally decried in the West. Why isn’t FGM also applied to the increasingly common cosmetic surgery for young women in Western countries? And if we condemn FGM, shouldn’t male circumcision be subject to the same standard? As bioethicists continue debating the issue, there seems to be growing sympathy for permitting at least the minimally-harmful forms of FGM.

Which brings us to a very interesting perspective on the debate which appeared recently in the Journal of Medical Ethics blog. Matthew Johnson, of Lancaster University, says that most parents who subject their daughters to FGM do it because they love them.

[They] believe that they are acting in their children’s best interests when having them cut. They believe that being cut will ensure that their children are socially accepted, that their health will be improved and that they will live better lives than if they were left intact.

Criminalising their behaviour and packing them off to jail would do more harm than good. “Sending parents to prison serves, in most cases, to undermine, rather than promote, the wellbeing of children.”

In a fascinating rhetorical twist, he compares the alien practice of FGM to the familiar practice of sending very young children to boarding schools. Complaints by “survivors” of the boarding school experience are beginning to surface. Their grievance is not only sexual abuse and bullying, but the practice of “privileged abandonment” itself, which created generations of upper-crust, stiff-upper-lip, emotionally frigid adults. Brookfield Grammar School, the fictional setting for Goodbye, Mr Chips, was not representative of the schools which formed Britain's elite:

While the harms of abusive boarding schools are very different, along a number of dimensions, to FGM, they can be significant, debilitating, and caused by the adaptive preferences of parents. There are no calls for the prosecution of parents who handed their children over to public school child molesters or who ignored the suffering of their children at these institutions or who even willfully wished for their children to be transformed into stoic individuals lacking in empathy.

After all, they only wished the best for their children. Many parents felt deeply uncomfortable as they left their children at these institutions, helpless in the knowledge, perpetuated by their privileged communities, that abandonment was an integral means of shaping their offspring into respectable citizens. Despite all the evidence of harm among some former pupils, there has hardly been a wave of calls for parents to be penalized for their actions.

Johnson argues that the only way that “FGM or male circumcision will disappear is by people in practicing communities gradually rejecting it collectively themselves”. And he concludes that “It is unfortunate, then, that a government led by people from boarding schools should be committed to inflicting separation between children and their parents by sending the latter to prison – whether the former believe they have been harmed or not.”   




MORE ON THESE TOPICS | circumcision, female genital mutilation

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Clinton fumbles on end-of-life choices


Clinton's response is at 2.00 minutes 

After California, the biggest state in the US, legalized assisted suicide, and after a video by Brittany Maynard went viral on YouTube, you might think that candidates for the White House would have clear and crisp opinions on its ethics and feasibility.

But when Hillary Clinton was asked for her opinion in a New Hampshire town hall debate, she was stumped. “This is the first time I've been asked that question,” she told an 81-year-old man with colon cancer. Fumbling for words, she produced a few woolly platitudes. At least it is clear that she is opposed to involuntary euthanasia.

“We need to have a conversation in our country. There are states, as you know that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals.

But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective.

So here's how I think about it.

I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses.

So I don't have any easy or glib answer for you.

I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been.

Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw.

So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

To be fair to Mrs Clinton, bioethical issues do not have top billing in the 2016 campaign. It will be interesting to see what the other candidates have to say.




MORE ON THESE TOPICS | 2016 US election,