Saturday, April 30, 2016

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Canada is soon to have legislation permitting euthanasia and assisted suicide, as decreed by its Supreme Court. One issue, however, over which some uncertainty hovers is how much wriggle room should be left for doctors who have ethical objections to the new regime.

One of the country’s most influential bioethicists, Udo Schuklenk, who is also the co-editor of the journal Bioethics, contends that there is no room for conscientious objection in a modern health care system. Doctors have an ethical and legal obligation to provide legal and social useful services like euthanasia. If they don’t like it, they should get another job, just as other people do when they don’t like the boss’s orders.

Interestingly, the writers cite the 17th century philosopher Thomas Hobbes in support of their attack on the rights of conscience. The subject in Hobbes’s Leviathan has no need of an individual conscience, for “the law is the public conscience by which he hath already undertaken to be guided”.

Since Hobbes laid the foundation for the modern totalitarian state, this allusion seems ominous. Yes, there will be problems in trying to accommodate conscientious objectors. But the abolition of conscience leads to problems as well. Wouldn’t Schuklenk’s ethical framework work just as well in Saudi Arabia? If a doctor there refused to amputate the hand of a thief, would he argue that he should to get another job? If he refused to perform female genital mutilation, should he be fired because he has defied the law? 

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Michael Cook
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This week in BioEdge

2016-04-18 12:43 AM
Why should we respect conscientious objectors?
by | Apr 23, 2016
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tags: Canada, conscience, conscientious objection, euthanasia

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. 

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Donor anonymity is dead
by | Apr 23, 2016
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tags: donor anonymity, gamete donation, sperm donation

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.”

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Fallout from Chernobyl continues 30 years on
by Xavier Symons | Apr 23, 2016
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tags: environmental ethics

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. 

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Illegal organ trade burgeoning in Iraq
by Xavier Symons | Apr 23, 2016
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tags: organ procurement, organ trafficking

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.  

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IVF experts divided over mosaic embryos
by Xavier Symons | Apr 23, 2016
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tags: clinical ethics, IVF

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”. 

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Nascent concerns about womb transplants
by Xavier Symons | Apr 23, 2016
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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.

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Horrific abuse case raises questions over international surrogacy
by | Apr 22, 2016
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tags: child sexual abuse, surrogacy, surrogate motherhood

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."

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Where to publish your bioethics articles
by | Apr 22, 2016
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tags: bioethics journals, publication ethics

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!

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Summer school in bioethics
by | Apr 21, 2016
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tags: bioethics, bioethics education

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.

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Michael Cook
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