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Thursday, August 25, 2016

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FROM THE EDITOR

Costa Rica is a small Central American republic of about 4.5 million people which is remarkably stable, compared to other countries in the region. It is one of the few countries in the world without a standing army. Its democratic institutions are robust. A higher proportion of people turn out to vote than in the US. The percentage of seats in parliament held by women is nearly double that of the US – about one-third.

Yet Costa Rica has been dragooned by an international court into enacting legislation which violates its Constitution. In 2000 it became the only country in the world to ban IVF, based on a Supreme Court ruling that this violated a constitutional guarantee to the right to life for the unborn. Last year, after many legal battles, Costa Rica was ordered by the Inter-American Court of Human Rights to enact legislation enabling IVF -- against the will of its legislature and Supreme Court. “Seven foreigners are making decisions about human life in Costa Rica,” said one deputy bitterly. After more legal tussles, clinics began offering IVF procedures last month.

Regardless of where one stands on the ethics of IVF, this seems like a low point for respect for democracy. An article in Nature crowed over the victory and said that the next goal must be the legalization of abortion. There’s something quite cynical about this. If the Inter-American Court of Human Rights struck down the death penalty in the US, all Americans would be united in their outrage. Voters in the UK supported Brexit because EU courts were suborning UK legislation, amongst other issues. Yet no one is defending Costa Rica’s right to make up its own mind on controversial bioethical problems.

This is The Mouse That Roared with an unhappy ending.  

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Michael Cook
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2016-08-15 1:12 AM
Transplant doctors clash over Chinese organ donor system
by Xavier Symons | Aug 20, 2016
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tags: china, falun gong, forced organ harvesting, organ transplantation

Criticism of alleged forced organ harvesting in China reached fever pitch this week as the 26th International Congress of The Transplantation Society convened for the first time on Chinese soil.

The Congress, which opened in Hong Kong on Wednesday, features a number of presentations from Chinese researchers, including former Vice-Minister for Health Huang Jiefu, and marks the end of a longstanding Transplantation Society (TTS) embargo on research from China.

Despite claims from Chinese officials that organs will no longer be harvested from executed prisoners, experts from around the world have slammed TTS for this year’s Congress, saying it implies implicit endorsement of current and past organ harvesting practices in China.

In an article published on Wednesday in the American Journal of Transplantation, a day before the Congress opened in Hong Kong, doctors and members of a non-governmental medical organization questioned the “veracity of the announced changes”:

“It is noticeable that China has neither addressed nor included in the reform a pledge to end the procurement of organs from prisoners of conscience, nor have they initiated any legislative amendments...Until we have independent and objective evidence of a complete cessation of unethical organ procurement from prisoners, the medical community has a professional responsibility to maintain the academic embargo on Chinese transplant professionals.”

Current TTS president Philip O’Connell and past president Jeremy Chapman, both Australian doctors based in Sydney, have been heavily criticised for ongoing collaboration with researchers from Chinese hospitals.

Despite having expressed grave concerns about China’s practices as late as December 2013, Jeremy Chapman told the Sydney Morning Herald earlier this year that he believes China has ended the use of organs from executed prisoners. 

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Baby boomers will clamour for euthanasia, says Udo Schuklenk
by Xavier Symons | Aug 20, 2016
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tags: baby boomers, euthanasia, social psychology

The good ol' days of Flower Power    

How should we explain the recent success of the assisted dying lobby in the US and Canada?

Bioethicist and euthanasia advocate Udo Schuklenk suggests the baby boomer generation has played a particularly important role in challenging ‘antiquated’ social conventions about death and end-of-life issues.

In an editorial in the journal Bioethics, Schuklenk suggests that assisted dying is a very relevant issue for the ageing baby boomers (aged between 52 and 70 years), and it now seems to have become a focus for their “revolutionary sentiments”:

“It is not terribly surprising, with baby boomer finding themselves – perhaps to their greatest surprise - at the levers of power of the system that they rebelled against in the 1960s and 1970s, that the number of jurisdictions that have decriminalised assisted dying is steadily increasing. Many legislators and judges are baby boomers. Just as baby boomers fought hard for the right to live their life by their own lights, they were bound not to hand control over to others when it came to their own dying.”

Schuklenk suggests that the question for most baby boomers is not whether assisted dying should be legalised, but rather under what circumstances:

“The next frontier for our baby boomer legislators and judges, undoubtedly, will be the issue of scope, when it comes to assisted dying. Should it be patient choice, irreversibility of the disease condition and unbearable quality of life as decision-making criteria, or should impending death be added as another necessary condition?”

A 2015 U.S. Gallup Poll found that 61% of adults 55 or older thought doctors should be allowed to assist terminally ill patients to commit suicide. Support was, nevertheless, lower in this demographic than younger age brackets. 

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More donating their bodies to science
by | Aug 20, 2016
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tags: cadaver donations, cremation, donating bodies to science, respect for cadavers

Funeral homes are earning more through cremation of bodies donated to science   

More and more people are leaving their bodies to American medical schools as subjects for dissection, according to an article from Associated Press. The surge in donation has been a bonanza for medical schools, which use the cadavers for anatomy classes or for practicing surgical techniques.

"Not too long ago, it was taboo. Now we have thousands of registered donors," said Mark Zavoyna, operations manager for Georgetown University's body donation program. Other universities also report increases, although some have actually declined in recent years. ScienceCare, which describes itself as "the world’s largest accredited whole body donation program", now gets 5,000 cadavers a year, twice as many as it did in 2010.

ScienceCare’s sales pitch appeals to generosity and altruism: “By providing a vital service and a pathway to greater knowledge and discovery, together we can help save lives, advance medical research and education, and improve quality of life for families and the community.”

But other factors are at work as well. The first is the cost of cremation and funerals. Bodies used by medical schools are cremated and returned to families, often at no expense. This is an important consideration when the average cost of a burial is US$8-10,000. The second is the weakening of religious objections to dissection and cremation. According to Time magazine, for the first time in the US, more people were cremated than buried in 2015. In 1980, fewer than 10% of people chose cremation. 

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Bioethicist alleges “publication bias” at NEJM
by | Aug 20, 2016
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tags: bioethics, editorial ethics, nejm

MICHAEL DWYER/ASSOCIATED PRESS   

For a fascinating behind-the-scenes view of how a major medical journal can stifle heterodox views, it is hard to beat Ruth Macklin’s saga in the Indian Journal of Medical Ethics (IJME).

Dr Macklin, a prominent bioethicist at Albert Einstein College of Medicine, in New York, disagreed strongly with a battery of articles published in the New England Journal of Medicine about treatments for extremely premature newborns.

The medical issue is complex. Basically the so-called SUPPORT study compared oxygen levels given to newborns in order to determine the optimal level. A lot is at stake; wrong levels can result in blindness and death. One vocal critic of the SUPPORT study, Peter Aleff, has a brain-damaged and blind son whose disabilities he attributes to problematic oxygen levels. He has described the SUPPORT study as “even more unethical than the syphilis studies in Guatemala and Tuskegee”.  

After the results of the SUPPORT study were published in the NEJM in 2010, the Office of Human Research Protections (OHRP) rebuked the University of Alabama for the inadequacy of its informed consent forms. The NEJM came out with all guns blazing in defense of its editorial judgement and launched four counter-attacks on OHRP: an article by two leading bioethicists; an editorial by the NEJM editor, Jeffrey M. Drazen; a long letter signed by 46 bioethicists and paediatricians; and an article by three officials at the National Institutes of Health, including its head, Francis S. Collins.

Dr Macklin and two colleagues studied the forms at the centre of this controversy. In their view, OHRP was right: “They failed to disclose the foreseeable risks of the study that the parents of the premature infants should have been told about before deciding to enter their babies in the study.” They composed a letter with 45 signatories questioning the regnant orthodoxy at the NEJM.

To Dr Macklin’s surprise, Dr Drazen refused to publish it, except in a very condensed form. After much negotiation, a version of the letter on this important topic appeared in 2013, but only online. Her correspondence with him is the centrepiece of her article in the IJME -- a duel between two sharp and powerful minds. Dr Macklin concludes:

“[All this] raises the question of a reputed journal's ability to bias its readers by the sheer number of publications on one side of a controversial issue. … Although this sort of potential bias does not constitute a direct conflict of interest, it may very well fall into another ethically suspect category: publication bias.”

This is not the only controversy in which the NEJM and Dr Drazen have become embroiled. “They basically have a view that . . . they don’t need to change or adapt. It’s their way or the highway,” Dr. Eric Topol, director of the Scripps Translational Science Institute, told the Boston Globe earlier this year. “Most people are afraid to say anything about the New England Journal because they’re afraid they won’t get something published there.” 

Dr Drazen brushed off criticism in an interview with the Globe. “If there’s anything that I have a passion for, it’s getting it right,” he said. “We work very hard at that. We’re not arrogant. We’re not dismissive.”

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Australia urges Cambodia to crack down on surrogacy services
by Xavier Symons | Aug 20, 2016
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tags: cambodia, commercial surrogacy, thailand

With commercial surrogacy now outlawed in Thailand, India and Nepal, desperate couples are turning to agencies in Cambodia.

Although many surrogacy agencies have shifted their operations to Phnom Penh over the past two years, Cambodian authorities are yet to issue a law regulating or prohibiting surrogacy in the country.

According to the Sydney Morning Herald, surrogacy agencies based in the capital boast of high success rates on their websites, and several babies are believed to have been delivered to Australian couples.

Sam Everingham, the founder of the organisation Families Through Surrogacy, warned of the dangers of entering into surrogacy arrangements in Cambodia:

“We have to be aware that surrogacy is a foreign concept in Cambodia. No laws are in place to regulate the process, leaving both parents and surrogates unprotected”.

Surrogacy is not socially condoned or widely understood in Cambodia, and many of the surrogates in the capital are believed to be Thai women bypassing the new commercial ban in their own country.

The Australian ambassador to Cambodia Angela Corcoran recently met government officials to discuss surrogacy regulation. Officials told Australian representatives commercial surrogacy was banned in the country, though there is no law explicitly prohibiting the practice. 

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The pain of Indian surrogate mothers
by | Aug 20, 2016
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tags: india, surrogacy, surrogate motherhood

from the BBC  

It’s only anecdotal evidence, but a BBC story from the Indian city of Chennai shows that surrogate mothers feel emotionally traumatized by the wrench of surrendering a child whom they have carried for nine months. The money they earn does not compensate them for this pain. There are a dozen or more clinics in Chennai which broker surrogate babies, employing about 150 surrogate mothers.

S Sumathi, 38, mother of four

I never met the real parents and have no idea who they are. I was still under sedation when they removed the baby. I never set eyes on it. I have no idea whether it's white or black, whether it's Indian or foreigner, I don't even know whether it's a boy or a girl!

When I gained consciousness, my first words to my husband were, 'Did you see the baby? Is it a boy or a girl?' He said he hadn't seen it. I asked my doctor, but she didn't answer my question. 'You are a surrogate mother, you shouldn't ask these questions,' she said. But I want to know about the baby. I want to know where he or she is and what it is studying.

For three months after giving birth, I spent sleepless nights, I would get headaches thinking about the baby and I had to take medicines to calm down.

Every year, on 4 November, the day the baby was born, our family celebrates its birthday. I do all the rituals that I do for my other children. I fast in the morning, I cook payasam [rice pudding] and share it with my family and neighbours, and I visit the temple to pray for the baby's well-being and long life.

Anandi Chelappan, 34, mother of two

I never saw the baby after it was born. I told the doctor that I would like to see it, at least once. But she said, 'No, it will make you feel guilty.' For the first month, I cried a lot but my husband kept reminding me that 'it's not our baby, it belongs to others, we did this for money'.

I understand the child belongs to its parents and I was only renting out my womb, but since I carried it for nine months, it would be nice to get to know the parents. I don't want to interact with the baby, but I just want to see it from a distance. But we no longer speak about the baby at home.

With the money I earned, we managed to pay off all our debts and rented a home on a long-term lease, but the lease runs out next year and I'm thinking about being a surrogate mother for the second time.

Jothi Lakshmi, 30, mother of three boys, 12, 10 and 7

I never laid eyes on the baby and I think maybe it was for the best because if I had seen it, I would have felt very guilty giving it up. But it was hard, I had felt the baby move in my belly, I had become attached to it, and I couldn't see it. It just disappeared.

For about two-three years, I felt very bad and I lost a lot of weight. But now I don't want to see it. At home, we don't talk about it. I even discourage my husband from talking about it because I know it belongs to someone else. I have made peace with myself.

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Review: ‘The Ethics of Invention’
by Xavier Symons | Aug 20, 2016
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tags: artificial intelligence, ethics of technology, gene editing

A Harvard academic’s new book on the ethics of technology asks important questions about the regulation of developments in science and research.

In The Ethics of Invention: Technology and the Human Future, Harvard Kennedy School Professor Sheila Jasanoff argues that the political mechanisms for the ethical oversight of technology and research have failed to keep pace with rapid developments in applied science (particularly biomedical research).

Through countless meticulously researched case studies and examples, Jasanoff provides a detailed and comprehensive account of how technology is affecting our lives in ways we are only just beginning to understand. While there have been countless benefits that have come with the technologies that help define our modern lives, Jasanoff is apprehensive about unforeseen and undesirable outcomes.

“It would be foolish at best and dangerously innocent at worst to deny the advantages of the human-made instruments and infrastructures that make up the environments of modernity… Yet, whether we treat technology as a passive backdrop for a society that evolves according to unconstrained human choice or attribute to technology superhuman power to shape our destinies, we risk making conceptual errors that threaten our well-being …”

Jasanoff’s discussion ranges from recent developments in genetics, such as GMOs and gene editing, to changes to privacy affected by social media and the pervasive influence of the internet.

While acknowledging the pluralistic nature of most Western societies, Jasanoff encourages government and industry to work together to facilitate dialogue about the sorts of values that particular technological developments promote, and the sorts of values that we hold and want to advance in the community. Jasanoff is, after all, under no illusion that new technologies are somehow ‘value-neutral’ or ‘value-free’.

With accusations of Neo-Luddism flying at anyone who dare question the ethics of artificial intelligence research, Jasanoff’s book is a timely and thoughtful intervention into public debate. 

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Save the date: November 2 is World Right to Die Day
by | Aug 20, 2016
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tags: assisted suicide, euthanasia, right-to-die

A Mexican celebration of the Día de Muertos   

The World Federation of Right to Die Societies has designated November 2 as World Right to Die Day. The date is already crowded with significant commemorations. Catholics and Anglicans celebrate the second day of November as the Feast of All Souls, when prayers are said for all departed souls.

In Mexico, Catholic doctrines embellished with indigenous beliefs have given rise to the Día de Muertos, a festival of death celebrated with great gusto. In the United States there has been an effort to nominate November 2 as National Plan Your Epitaph Day. And the United Nations has designated it as the rather mysterious International Day to End Impunity

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Documentary chronicles history of Dutch euthanasia law
by | Aug 18, 2016
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tags: documentaries, euthanasia, netherlands

The Fight to Die from Nan Rosens on Vimeo.

A new documentary, The Fight to Die, made by Dutch director Nan Rosens, gives a quick history of the Dutch legalisation from the 1970s. It was partly financed by NVVE, the Dutch right-to-die organization. For supporters of euthanasia, the film depicts the major figures in changing the law as bold and compassionate innovators. For opponents, it gives some insight into the characters and personalities of the leading figures in the movement.

Psychiatrist Boudewijn Chabot was one of these. In 1993 he euthanased a woman who was not physically ill, reported his act to the police, and was put on trial. He was acquitted in a lower court and when the prosecution appealed, the Supreme Court found him guilty but refused to punish him. Nearly a quarter of a century later, he makes an interesting prediction:   

“A generation of people 60-65 years old is growing up. They are used to ordering or buying illegal drugs for the weekend. The same generation will be 70+ and will also want to face death the same way. You can say that’s not allowed. But let’s teach them and their children that it’s possible in a good way.

The film is in Dutch with English sub-titles.

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