Stem cell shenanigans by a Casanova in the Karolinska


Paolo Macchiarini   

Is there something about stem cells which provokes highly competent scientists into grandstanding and fraud? In the latest scandal the Karolinska Institute (KI) in Stockholm has declared that it has “lost confidence” in celebrity surgeon Paolo Macchiarini.

Macchiarini became a medical star after creating tracheas for patients with stem cells seeded on a biological and synthetic scaffold. It seems little short of miraculous, to judge from media reports. However, it has emerged that his research papers did not disclose the sometimes-disastrous outcomes of the operations and that he may not have informed his patients of the risks of the surgery. Several of them have died.

He was cleared of scientific misconduct in Sweden last year after an investigation by the vice-chancellor of the Karolinska Institute. In the meantime, Macchiarini had shifted his work to Russia where another of his patients died.

The Karolinska Institute is Sweden’s jewel of science and the institution which is the home of the selection committee for the Nobel Prize in Medicine. Now it fears that Macchiarini’s machinations have “have undermined KI’s reputation and damaged the public’s trust in KI”.

The rupture with KI was provoked by a three-part documentary on Swedish television about Macchiarini’s work. Swedish scientists are particularly troubled by the death of his Russian patient, who had been relatively healthy.

The documentary itself was triggered by an incredible feature in Vanity Fair about Macchiarini’s romance with an experienced NBC TV producer. It portrays him as a scientific Casanova who boasted that he had operated on Bill and Hillary Clinton, Emperor Akihito of Japan, and President Obama. He was also the personal doctor of Pope Francis and so arranged for them to be married by the Pope himself in Castel Gandolfo -- even though he was still married and she was a divorced non-Catholic.

It was all a lie. A private investigator told Vanity Fair, “I’ve never in my experience witnessed a fraud like this, with this level of international flair…. The fact that he could keep all the details straight and compartmentalize these different lives and lies is really amazing.”




MORE ON THESE TOPICS | fraud, stem cell research, stem cells

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Preparing for medicine with artificial gametes


Foreseeing bioethical problems is one responsibility of the UK think tank, the Nuffield Council on Bioethics. It has just released three background papers on increased lifespan, dual use in biology and biomedicine, and artificial gametes.

The last of these is particularly interesting, in view of the hubbub over the rapid advances in gene editing, which could accelerate research in this field. Artificial gametes are eggs and sperm produced from other cells. There has been some success with creating them for mice, but not with humans -- yet. Success is probably many years away. But as the authors point out, the time to prepare is now.

Written by Anna Smajdor, of the University of East Anglia and Daniela Cutas, of Umeå University, in Sweden. the white paper is “necessarily speculative” and does not recommend specific policies. But it does outline some of the opportunities and hazards that lie ahead.

Artificial gametes could be useful for research into infertility. But the four ways in which they could be used in reproduction are far more controversial: for pre-pubescent children who have been rendered infertile because of cancer treatment; for women whose eggs are exhausted after the menopause; for single women; and for gay and lesbian couples.

What are the benefits? Some bioethicists hail artificial gametes as “democratising reproduction” for anyone who wants offspring. But first and foremost is relief from involuntary childlessness, although as Smajdor and Cutas point out, this entrenches the privileging of genetic ties between parents and children, which many bioethicists question.

The medical hazards would be considerable, at least initially, and these are regarded by many bioethicists as the only real ethical obstacle to any technique in artificial reproduction. But there is also psychosocial harm to consider. By confusing traditional forms of parentage, artificial gametes would give rise to novel types of family structures.

One hazard might be the commodification of embryos, as prospective parents “shop” for one with ideal qualities. Another might be the multiplication of parents. By using artificial gametes, the number of genetic parents could be anywhere between one (if a woman created her own sperm cells) to 4 or more. 

For example, suppose two people provide gametes from which an embryo is derived, in order to generate ESCs. These ESCs are differentiated into eggs, which are fertilised with sperm derived from ESCs obtained from a different embryo. If the sperm and eggs obtained through this process are fertilised, the offspring will be genetically related to the four adult ‘parents’, and clearly, by continuing through the cycle, many more contributors would be able to participate. Those who fear the effects of family confusion on offspring, may regard this as a worrying prospect.

Governments already face challenges in creating legislation to accommodate new forms of relationships. “If until now every child has had a genetic mother and a genetic father, even this basic statement could be challenged,” the authors write.

And if sex is no longer required to create children, then gamete theft becomes possible. Theoretically a cheek swab or a handkerchief could be used to create sperm, eggs, embryos and children.

The authors offer no answers, just questions. But it could be enough for a gripping script for Hollywood science thriller a la Gattaca.





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Another euthanasia scandal in Belgium


Tine Nys (centre) with her sisters  

Another euthanasia scandal in Belgium. Two sisters have complained on a television program, Terzake, about the euthanasia of their sister in April 2010. Tine Nys was 37 at the time and had broken up with her live-in boyfriend. On Christmas Eve 2009 she announced that she was going to be euthanased.

What horrified her sisters, Lotte and Sophie, was the callousness of the doctors involved and how little interest they had in persuading her to live. They described it to the Terzake journalist as an act of “perverse” cruelty.

Belgium’s euthanasia law allows people to request euthanasia if they have unbearable psychological suffering. Tine was diagnosed with autism. The sickness from which euthanasia candidates are suffering is supposed to be incurable, but the doctors made no effort to treat her.

The day of her death was immensely distressing for the family. The doctor was so incompetent that he failed to bring bandages and he even described Tine’s death as “a lethal injection administered to a favourite pet to end its suffering”. The three doctors who approved the euthanasia had not communicated with each other.

The paperwork was not done within the required time but the Belgian euthanasia commission still approved the doctor’s handiwork.

"I hope this was bad luck, but I fear that this is not an isolated case," said Joris Vandenberghe, a Flemish psychiatrist told Terzake. "This is really very worrying. "The bar for euthanasia should be higher.”




MORE ON THESE TOPICS | Belgium, euthanasia

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LA doctor gets 30 years for prescribing pain killers to addicts


Hsiu-Ying "Lisa" Tseng   

A Los Angeles doctor has been sentenced to 30 years in jail for prescribing painkillers to drug addicts. Hsiu-Ying "Lisa" Tseng, 46, was convicted last year of the deaths of three people.

At the trial the prosecutor declared that Tseng had ignored warnings from police and the coroner and failed to change her prescribing habits even after the deaths of her patients. Her motivation was said to be money.

The larger issue is whether this case will have a deterrent effect upon how American doctors treat pain. According to the Los Angeles Times, some experts fear that Tseng’s conviction make doctors fearful of prosecution and hesitant to prescribe potent but necessary painkillers.

"The doctors are scared out of their minds," Tseng’s attorney told the LA Times. "The pendulum has swung so far. The people who need [pain medication] can't get it now."

In a statement to the judge before she was sentenced, Tseng wrote

“I terribly regret that even after learning of the overdoses, I did not investigate my prescribing practices to see if they played a role … I know that being remorseful for my failures as a doctor and as a person does not reverse time or does not help the families heal their grief.... No words can properly describe the sadness.”




MORE ON THESE TOPICS | malfeasance, pain-killers

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US military to offer sperm and egg storage


As part of its effort to make the US Department of Defense a more “family-friendly employer”, Secretary Ashton Carter has announced that the military will pay for storing eggs and sperm for its troops, as well as for more IVF treatment.

Women soldiers are at risk of missing out on their peak reproductive years by taking up a career in the military and men in combat risk damage to their reproductive organs. At a press conference at which he outlined measures ranging from creating 3,600 breast-feeding rooms to more IVF clinics, Carter explained the new policy on gamete storage:

"We can help our men and women preserve their ability to start a family, even if they suffer certain combat injuries. That's why we will cover the cost of freezing sperm or eggs through a pilot program for active duty service members -- a benefit that will help provide men and women, especially those deployed in combat, with greater peace of mind. This investment will also provide greater flexibility for our troops who want to start a family, but find it difficult because of where they find themselves in their careers."

The initiative will keep the Pentagon, one of the world’s largest employers, in step with large American corporations who are offering egg freezing in order to retain female talent.

However, the new policies have been poorly thought out, bioethicist Art Caplan, of New York University’s Langone Medical Center, told the New York Times:

“Freezing sperm and eggs is not like freezing chicken for dinner. What happens if you die — can your wife use it? And what if your mother wants grandchildren and your wife doesn’t, does that mean the sperm can be used with a surrogate? If you’re cognitively disabled, can it be used? And what happens if the company housing your sperm or eggs goes bankrupt?”




MORE ON THESE TOPICS | egg freezing, sperm banks, US military

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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Zika, birth control and free abortion pills


As concern mounts about the spread of the Zika virus, groups around the world are suggesting radical measures for North and South America.

Perhaps the most extreme response has been from abortion activist Rebecca Gomperts, the founder and director of Women on Web. Gomperts’ organisation is offering women infected with Zika free abortion pills, apparently to halt the rush toward unsafe termination of pregnancy.

“The Zika virus is now spreading to most of the countries where abortion is very restricted,” Gomperts told AFP.

“We really care about women's health and lives and we want to make sure that women have access to a good medical abortion.”

Zika is thought to cause microcephaly, a rare birth defect, although the link is yet to be scientifically proven.

Abortion is illegal in Brazil save a few exceptions, and government authorities intercept abortifacients being shipped into the country. Gomperts is calling on the government to halt the ban “at least for the duration of the Zika epidemic”.

Elsewhere, Oxford bioethicist Dominic Wilkinson argued that Latin American and Caribbean nations should invest in birth control to prevent cases of microcephaly. In an article in the Conversation, Wilkinson suggested that birth control -- though having limited efficacy due to the predominance of unwanted pregnancies -- would at least stop a good proportion of pregnancies among women carrying the Zika virus:  

“If and when, international funds become available in response to the Zika epidemic, there should be a significant investment in birth control in Latin America. Governments in these regions should take seriously the need to address and remove barriers to contraception.”



MORE ON THESE TOPICS | abortion, birth control, epidemics, Zika

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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Three parent babies – but only males


The US National Academies of Sciences, Engineering and Medicine has recommended that US government allow mitochondrial DNA transfer in male embryos. The Academy made the recommendation in report issued last week, entitled Mitochondrial Replacement Techniques: Ethical, Social, and Policy Considerations.

The report’s authors recognize the ethical complexities of the procedure, which was approved by the UK Parliament last year, but nevertheless suggest that the DNA alterations involved are minimal enough to make it ethically permissible. As stated in the abstract:

“...While significant ethical, social, and policy considerations are associated with MRT, the most germane of these issues can be avoided through limitations on the use of MRT or are blunted by meaningful differences between the heritable genetic modification introduced by MRT and heritable genetic modification of nDNA. Therefore, the committee concluded that it is ethically permissible to conduct clinical investigations of MRT.”

Oddly enough, the report argues that the procedure should be limited to male embryos. The authors state that it is prudent to minimise the dangers of ‘passing on’ adverse effects of the procedure to future generations, and one way to do this is to begin with males only:

“Intrauterine transfer for gestation [should be] limited to male embryos in order to prevent potential adverse and uncertain consequences of MRT from being passed on to future generations”.

Later in the report they proceed to outline the conditions for an ethical expansion of MRT research to include transfer of female embryos.

The sons-only recommendation has been criticised by researchers in the UK, whose parliament gave the go-ahead for mitochondrial replacement therapy last year without any such restriction.

“I think the UK came to the right conclusion,” says Alison Murdoch of Newcastle University in the UK, whose team is developing mitochondrial replacement therapies. “This would rather defeat the purpose of what we are trying to do.”

At the moment, these recommendations are no more than discussion points, as the FDA is unable to authorize the procedure without Congressional approval – which seems unlikely in an election year. 





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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Green light for UK CRISPR embryo research


Developmental biologist Kathy Niakan has received permission from the UK Human Fertilization and Embryology Authority (HFEA) to edit the genome of human embryos using the new CRISPR technology.

The HFEA, which grants licenses for experimentation on embryos, sperm and eggs in the UK,  approved the research at a license committee meeting on January 14.

Niakan, a researcher at the Francis Crick Institute in London, plans to investigate the genetic make-up needed for an embryo to develop into a healthy baby.

"The reason why it is so important is because miscarriages and infertility are extremely common, but they're not very well understood”, she told the BBC.

The UK has now become the first nation in the world to consider and approve the DNA-altering technique in embryos.

Some scientists lauded the announcement. Peter Braude, an emeritus professor of obstetrics and gynecology at King’s College London, said that he was delighted to hear of the approval:

“Gene editing tools will allow fresh insights into the basic genetic mechanisms that control cell allocation in the early embryo. These mechanisms are crucial in ensuring healthy normal development and implantation, and when they go wrong might result in failure to implant or miscarriage. I await results with interest.”

Others were more sceptical. Donna Dickenson, Emeritus Professor of Medical Ethics, at the University of London, expressed concern about the potential effects of germline modifications:

“Future generations, however, are not able to consent to germline editing that will manipulate their welfare in ways that we cannot yet predict or alter if things go wrong. Looking back, our descendants might or might not accept our decision as legitimate, but they will have no way of changing it.”

Peter Saunders, of the Christian Medical Fellowship, is doubtful about the ability of embryonic gene-editing to redress genetic abnormalities:

“Genetic abnormalities which result in implantation failure (either in IVF or naturally) or miscarriage are chromosomal abnormalities, not abnormalities in single genes. But only abnormalities in single genes can be fixed with gene editing of the sort that the Crick Institute is proposing. Gene editing does not fix chromosomal abnormalities.” 



MORE ON THESE TOPICS | CRISPR, embryo research, gene editing, UK

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Bioethics and royalty


A Belgian court has granted Delphine Boel, a 46-year-old artist currently living in the UK, the right to seek legal recognition of her alleged royal parentage, in a landmark decision that has brought Belgium’s paternity legislation into question.

Boel claims that she is the biological daughter of former Belgian King Albert II, who is said to have had an affair with Boel’s mother, Ms. Sibylle de Selys Longchamps, in the late 1970s.

Boel petitioned a top court in Brussels in 2013 to revoke the official paternity of her legal father, Jacques Boel, a billionaire who disinherited her. Technically she is too old to do this, yet after the case was referred to Belgium’s constitutional court the existing legislation was overruled. The court ruled as unconstitutional the relevant legal stipulations. Under existing law a person needs to be younger than 22 (or within a year of becoming aware of their true paternity) if they are to petition for the revocation of legal paternity.

Boel will now be able to contest her existing paternity record and pursue her claim against the ex-monarch.

In an interview with the Belgian television station RTL-TVI, Boel said that she was immensely pleased with the outcome of the case:

“I’m very happy because this will help other children in a similar situation...and that to me is an enormous pleasure”.

In their decision the court’s judges said that the right to know one’s true parentage is more important than existing family ties. 




MORE ON THESE TOPICS | Belgium, law, paternity, paternity tests

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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Euthanasia continues to rise in Belgium


The number of euthanasia cases annually in Belgium has exceeded two thousand for the first time since the controversial practice was legalised in 2002.

The new statistics, released by Belgium’s Federal Evaluation and Control Commission for Euthanasia, put the total of recorded cases in 2015 at 2021 (a rise of over 100 cases from 2014).

The figures have steadily increased since 2002, totalling over 1000 annually for the first time in 2011 (1133), and then rising dramatically in 2013 and 2014 (1816 and 1924 respectively).

Wim Distelmans, the head of the commission, attributes the surge to an increase in the reporting of euthanasia by doctors. 

Belgium extended the scope of its law in 2014 to allow euthanasia for minors of any age suffering from incurable diseases if they were capable of making a rational decision about their fate. Distelmans says the commission is yet to receive a request for euthanasia for a minor.

Distelmans said the actual total of deaths in 2015 might be much higher than reported. "Remember, there could be some euthanasia cases carried out but which are not declared so we cannot say for certain what the position is”, he told the Belgian news agency Belga




MORE ON THESE TOPICS | Belgium, euthanasia, Wim Distelmans

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French surrogate mother cheats clients


A French surrogate mother has been arrested for fraud after lying to two gay couples about the death of their children.

The woman, 37, told the couples that their children, actually perfectly healthy, had died around birth; she proceeded to sell the babies to two other couples, one in Western France and the other in Luxembourg.

The woman was apprehended in the process of setting up arrangements with three other unsuspecting couples.

A defence lawyer said that woman was raped by her father as a teenager and suffers from “severe emotional neglect” and low self-esteem.

Interestingly, the woman had originally become involved in surrogacy for altruistic reasons. She had already had four children when in 2008 she offered her fifth child for free to a Parisian couple.

Deputy prosecutor Jean Dematteis has recommended that she be sentenced to a year in jail with nine months suspended and that all four couples in the case should be given suspended fines of 2,000 euros. All forms of surrogacy – including altruistic surrogacy – have been banned in France since 1994. 





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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Activists use Zika epidemic to press for abortion in Brazil


A woman in Brazil holds her daughter, who was born with microcephaly / New York Times   

The abortion debate has been reignited in Brazil amid fears about severe birth defects linked to the Zika virus. Zika is thought to cause defects such as microcephaly in the babies of pregnant women, though the link is yet to be scientifically proven.

A group of Brazilian academics and activists has created a petition to ask the country's supreme court to allow abortions for women who have contracted the virus.

The group, based around the Anis Institute of Bioethics Human Rights and Gender at Brazilia University, successfully campaigned in 2012 for the adding of a third exception to Brazil’s ban on abortion. Now in addition to medical emergencies and cases of rape, women can legally seek an abortion if their child is suffering from the brain condition known as anencephaly.

The group is confident that they can secure yet another exception for Zika sufferers. Deborah Diniz, a legal academic at Brazilia University signatory of the petition, blamed the government for the outbreak of the Zika virus, and said that the poor should not be penalised for policy blunders: “The state’s neglect generates a state responsibility” Diniz told the BBC.  

The virus is spreading rapidly across the Americas, and on Thursday the WHO forecast that as many as 4 million people in the region may become infected before the epidemic is controlled.  




MORE ON THESE TOPICS | abortion, Brazil, epidemics, Zika

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 Mas Bebes’


A new documentary produced by Academy Award-nominated filmmaker Rene Tamjina-Pena tells the story of several Mexican women who in the late 1960s and early 1970s were sterilized in US hospitals. The women, young, fearful, and sometimes unable to speak English, were operated on with limited (or sometimes even no) consent.

After years of dubious sterilization of migrant women, a lawsuit (Madrigal vs. Quilligan) was brought before the Supreme Court by a number of Latino women, represented by a young Mexican-American lawyer, Antonia Hernandez. The documentary, premiering Monday on PBS, is an unsettling reminder of one of a number of historical events that led to the establishment of strict consent guidelines in hospitals around the 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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Tables turned on undercover pro-life activists


In a surprise twist to the recent Planned Parenthood controversy, pro-life activist David Daleiden has been indicted by a grand jury in Harris County, Texas, on charges related to the use of fake IDs and offers to buy fetal tissue.

Daleiden could face up to 20 years imprisonment for “tampering with a government record”, a felony. He has also been charged with the attempted purchase and sale of human organs, a misdemeanour. Sandra S. Merritt, a colleague of Daleiden at the Centre for Medical Progress, was also indicted.

In a statement on Monday the grand jury said it had cleared Planned Parenthood of any wrongdoing.

Daleiden’s lawyers have called the charges legally flawed and said they will ask the district attorney not proceed with the case. Presidential hopeful Marco Rubio labelled the case “outrageous”, while prominent Fox News journalist Megyn Kelly described it as a “political hit job”. 




MORE ON THESE TOPICS | abortion, David Daleiden, law, Planned Parenthood, US

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London sperm bank allegedly promoting eugenics


The largest sperm bank in the UK is being investigated by the national fertility regulator for promoting eugenic practices. Following complaints about the London Sperm Bank, the Human Fertility and Embryology Authority has asked why donors with a long list of medical conditions are being excluded.

These include: attention deficit disorder (ADD), attention deficit hyperactivity disorder [ADHD], autism, Asperger syndrome, dyslexia, severe obsessive compulsive disorder, colour blindness, cystic fibrosis, Alzheimer’s disease, epilepsy, Parkinson disease and the motor disorder dyspraxia.

Media attention focused on dyslexia, as a number of prominent high achievers have been dyslexics, like Sir Richard Branson and Steve Jobs.

Fred Fisher, a 30-year-old dyslexic Oxford graduate who is working as a software engineers, was rejected by the sperm bank. “I told them this was eugenics, but it’s not even good eugenics. Would they turn away Richard Branson or Albert Einstein? We need innovative people who think differently in the world. Dyslexic people make a great contribution to our society.”

Steve O’Brien, chair of the Dyslexia Foundation, told The Guardian: “This is eugenics. It’s trying to say that dyslexics shouldn’t be in society.”

A spokesperson for the London Sperm Bank denied that the company’s policy was eugenicist. However, in a now-withdrawn leaflet, it stated that it excluded men with certain conditions to “minimise the risk of transmitting common genetic diseases or malformations to any children born”.




MORE ON THESE TOPICS | eugenics, sperm donation, 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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New French law creates right to terminal sedation


The French National Assembly has approved a law which creates a right to terminal sedation until death, but not to euthanasia or assisted suicide.  The law has been debated for years and the present text is a consensus which tries to maintain a middle ground between voluntary euthanasia and therapeutic obstinacy.

Patients have a right to request “deep, continuous sedation altering consciousness until death” but only if they are at the end of life. Doctors may stop life-sustaining treatments, including artificial hydration and nutrition. Sedation and painkillers will be allowed “even if they may shorten the person’s life”.

Socialist Alain Claeys, co-author of the bill, said: “Our text has one purpose: fighting a bad dying that still happens too often in France.” The conservative co-author Jean Leonetti, explained: “At end of your life, if the suffering is unbearable, you’ll be allowed to get to sleep, soothed and serene.”

The law also directs doctors to honour advance directives when patients are no longer able to communicate.

The new law contains ambiguities which will soon be put to the test. Pro-euthanasia sociologist Philippe Bataille told L'Humanité that the law enshrined a fundamental contradiction: it “makes euthanasia both possible and prohibited at the same time. That is to say, it prevents the doctor from intentionally causing death” but it also “allows a simple ‘letting die’ (not a ‘kill’), that is to say only the suspension of hydration and nutrition, accompanied by palliative care until death ensues”.

The anti-euthanasia group Soulager mais pas tuer (Care not killing) said that “The introduction of a ‘right of continuous deep sedation until death’ indeed opens the door to euthanasia. Its promoters have issued reassuring statements, but they have always refused to include black and white provisions in the law that the intention of this type of sedation must not be to cause death. In endorsing this deliberate blurring, this text weakens the relationship between carers and patients, since the new law does not clearly close the door to hidden euthanasia.”




MORE ON THESE TOPICS | euthanasia, France, terminal sedation

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Pope sets out his bioethics priorities


Sentences with the two words “Pope” and “bioethics” are normally accompanied by a “not”: prohibitions of therapies and criticisms of theories. Pope Francis’s latest remarks mark a refreshing change in style, though not in substance.

In an address this week to the Italian National Bioethics Committee, the Pope set down priorities for bioethicists.  

1. “The inter-disciplinary analysis of the causes of environmental degradation.” This is obviously a topic dear to his heart, as he devoted an entire encyclical to it last year. But it is not a conventional topic for bioethicists, Catholic or not.

2. “Disability and marginalization of vulnerable subjects”. This appears to be a new way of approaching the traditional Catholic insistence on protecting life from conception to natural death. “It is the challenge of opposing the throwaway culture, which has so many expressions today, among which is treating human embryos as disposable material, and also sick and elderly persons approaching death.”

3. International regulation of medical and biological activity.

One interesting aspect of his brief discourse was his assertion that “the Church does not claim any privileged space in this field, rather, she is satisfied when the civil conscience is able to reflect, discern and work, at various levels, on the basis of free and open rationality and of the constitutive values of the person and of society”. In other words, Francis seems to be claiming that a Catholic bioethicist should not use arguments drawn from faith but from reason. However, as always, he insisted that the ultimate purpose of bioethics is the service of the human person:

“the person in his singularity, always as an end and never simply as a means. This ethical principle is also fundamental in regard to the bio-technological applications in the medical field, which can never be used in a way that is harmful to human dignity, and even less be guided by industrial and commercial ends alone.”





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JAMA debates assisted suicide


The latest issue of JAMA showcases the views of leading American doctors and lawyers on physician-assisted suicide (PAS). The theme is captured by the headline above one of the articles: “Physician-Assisted Dying: Turning Point?” After California legalised it last year, other US states could follow. Nothing novel emerges from the discussion, other than a sense of impending change.

One article by a leading advocate of PAS, Timothy Quill, of the University of Rochester argues that “Patients with serious illness wish to have control over their own bodies, their own lives, and concern about future physical and psychosocial distress. Some view potential access to physician-assisted death as the best option to address these concerns.”

Dr Quill et al also insist that the terminology must change:

“Physician-assisted ‘suicide’ connotes mental illness, and suggests a self-destructive aspect of such decisions that many find offensive. Even the term physician-assisted death, although better than physician-assisted suicide, puts more emphasis on the physicians’ role than may be warranted. This issue is driven by patients and reflects fundamental concerns of patients living with serious illnesses who feel that they are being destroyed by their illness; they are seeking what they regard as a small measure of self-preservation. The term ‘hastening death’ is less judgmental and respects the profound search for preservation of the self that many patients seek, even at the last moments of their lives.”

Dr Tony Yang, of George Mason University, and Dr Farr Curlin, of Duke University, go to more fundamental issues. They question whether doctors ought to support the desire of a few patients for unlimited autonomy. They fear that this will eventually destroy trust patients’ trust in their physicians. 

"If the medical profession accepts physician-assisted suicide, it will be declaring decisively that “physicians” are mere providers of services, to be guided only by the desires of the individual patient, the will of the state or other third parties, and what the law allows. The idea of medicine as a profession, which embodies a shared commitment to care for persons who are sick and debilitated so as to restore their health, will quickly fade into memory. Those made vulnerable by sickness and debility, to whom physicians owe their solidarity as physicians, will have much less reason to entrust themselves to physicians’ care."

Patients like 29-year-old Brittany Maynard, whose YouTube video about her impending suicide in Oregon sparked the passage of California’s legislation, insist that they want to die on their own terms. But Yang and Curlin argue that: “Patients already have the right to refuse life-sustaining treatment. They have the right to proportionate palliation, even if death is hastened as a side effect. They also have the liberty to end their lives by all manner of methods that do not involve physicians.”

Like their opponents they also complain about terminology,  not because it is patronising, but because it lacks realism: “With respect to physician-assisted suicide, the ‘right to die’ is a euphemism for the putative ‘right to have a physician help me kill myself.’”

At the heart of their essay is the belief that doctors must maintain solidarity with those who suffer, not abandon them:

“Insofar as physicians enjoy societal trust, it is because since Hippocrates, physicians have maintained solidarity with those who are sick and disabled, seeking only to heal and refusing to use their skills and powers to do harm. That is why Doctors Without Borders treats injured Taliban soldiers. It is why physicians have refused to participate in capital punishment, or to be active combatants, or to cooperate with torture. It is why physicians have refused to help patients commit suicide. Many patients with terminal illness fear unbearable pain or other symptoms. The physicians’ role is to care for them in their illness so as to relieve pain or otherwise help them bear up under the symptoms they endure. Many patients loath the prospect of abject debility. The physician’s role is to maintain solidarity with those whose health is diminished, not to imply that debility renders a patient’s life not worth living.”

Palliative care expert Harvey Max Chochinov chaired a panel which reported to the Canadian government about community attitudes toward euthanasia. He also found difficulties with terminology.

“The terminology used seems to depend almost entirely on an individual’s philosophical vantage point. Descriptors from those appearing before the panel ran the gamut, from ‘killing’ to ‘an act of love’. Some took exception to the term physician-assisted dying, claiming that for those who look after patients with terminal illness, this describes the essence of their work. Others warned that the terms euthanasia and assisted suicide might be construed as judgmental, abrasive, or even punitive by patients contemplating death-hastening decisions. Many seem confused by the terminology…  A 2015 study indicated that only 40% of 271 Quebec health care professionals realized that medical aid in dying would allow them to administer lethal medication at the patient's request.”




MORE ON THESE TOPICS | assisted suicide, euthanasia, JAMA

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Half million at risk of female genital mutilation in US, says report


 Jaha Dukureh, American campaigner against FGM   

US government statistics show that more than half a million girls and women are at risk of female genital mutilation or its consequences in the United States. This figure has tripled over the last 25 years as a result of increased migration from countries where FGM is common.

The practice has been banned in the US for girls under 18 since 1996, when Congress passed the Federal Prohibition of Female Genital Mutilation Act.

“It’s the 21st century and I think no one should be forced to be go through something like this,” Jaha Dukureh, a FGM-survivor from Gambia who has been campaigning on the issue, told The Guardian. “No child should be forced to undergo this.”

However, it became apparent that some families were circumventing the ban by returning to their countries of origin (commonly known as “vacation cutting”). So in 2013, another law, the Transport for Female Genital Mutilation Act, made it a crime to knowingly transport a girl out of the United States for FGM.

The report from the Centers for Disease Control and Prevention estimates that 513,000 women and girls were at risk in 2012, the last year for which figures are available.

However, it is important to stress that no figures are available for how many actually underwent FGM. Most of the increase since the first estimate in 1990 has come from second-generation women and girls born in the US. In Europe, the risk of FGM for second-generation is relatively slight because immigrants tend to assimilate to the surrounding culture.

However, the huge increase may signal a need for appropriate healthcare – physical, emotional, psychosocial – for women at risk. 




MORE ON THESE TOPICS | female genital mutilation

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First euthanasia case in Quebec


At least one person and perhaps three have been euthanased in Quebec since the Canadian province’s legislation went into effect in December. Dr Georges L’Espérance, president of the death-with-dignity group l’Association québécoise pour le droit de mourir dans la dignité, said that he was not aware of the circumstances surrounding the deaths.

Dr L’Espérance does not believe that the number of euthanasia deaths will be very large. “Considering our population here and what has happened in other countries (where euthanasia is legal), I would be very surprised if we have more than 50 or 60 cases in the first year,” he told the National Post.

Quebec health authorities say that data on euthanasia will be confidential. The first figures will be released in June.

The legality of the deaths is disputed. Although the Supreme Court struck down the prohibition of assisted suicide and euthanasia in February 2015, Quebec is the only province which has passed a law regulating it. Technically, however, this conflicts with the still-extant national criminal code. Drafting of new legislation has been held up by a change of government after October’s election.

To solve this, the Supreme Court last week permitted assisted suicide across the country under certain circumstances, while granting the government four more months to pass regulations.

However, the deaths in Quebec preceded the Supreme Court’s concession and thus were technically illegal. Columnist Peter Stockland was scathing in his criticism of the province’s independent spirit: “it proceeded with the assisted suicide while maintaining the pretence of participating in the legal process. I do not know if that technically constitutes contempt of court. But I do know a very contemptuous nose thumbing when I see it.”




MORE ON THESE TOPICS | Canada, euthanasia, Quebec

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The dark past of progressive eugenics


The dark history of government-sponsored eugenics before World War II has largely been forgotten, although it is well documented. A new book, Illiberal Reformers: Race, Eugenics, and American Economics in the Progressive Era (Princeton UP, 2016), by Thomas C. Leonard, is a painful reminder that some of the best minds in the United States and Britain were in favour of purging the “race” of “defectives”.

The heyday of the eugenics movement was during World War I and the 1920s. Some geneticists distanced themselves from  eugenics, but usually because it had been tainted by racism and anti-Semitism.

Eugenics was literally regarded as a religion by leading economists. In 1915 Irving Fisher, one of the greatest of the early 20th century, told a Race Betterment Conference organised by cornflakes inventor and eugenicist John Henry Kellogg, that eugenics was “the foremost plan of human redemption”. Religious opponents (notably the Catholic Church) were a shrinking minority which had also opposed Copernicus, Galileo and Darwin.

It all seemed very scientific. In The Great Gatsby, F. Scott Fitzgerald’s famous novel, the central character complains that civilization is spinning apart and that “ if we don’t look out the white race will be — will be utterly submerged. It’s all scientific stuff; it’s been proved.”

D.H. Lawrence, best known as the author of Lady Chatterley’s Lover, believed that inferior stock should be eliminated. Anticipating the horrors of Auschwitz, he wrote in 1905:

If I had my way, I would build a lethal chamber as big as the Crystal Palace, with a military band playing softly, and a Cinematograph working brightly; then I’d go out in the back streets and main streets and bring them in, all the sick, the halt, and the maimed; I would lead them gently, and they would smile me a weary thanks; and the band would softly bubble out the ‘Hallelujah Chorus’.

Leonard’s focus is the effect of eugenics upon economics, so he also covers discrimination against African Americans, disputes between labour and capital and immigration. 




MORE ON THESE TOPICS | eugenics

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Complications of “effective referral”


Arrival of Hungarian Jews at Auschwitz-Birkenau in 1944   

Whether doctors who have a conscientious objection to abortion or euthanasia have an obligation to refer patients to a more cooperative doctor is a hotly debated topic in Canada and the US.

The College of Physicians and Surgeons of Ontario, for instance,  strongly supports "effective referral" for euthanasia. This approach is unacceptable to conscientious objectors because they believe that it makes them complicit in homicide and suicide.

Often those opposed to the notion of conscientious objection give the impression that they feel that refusing to refer is absurd, because the healthcare worker is not going to have direct involvement in the action.

However, the trial of a 95-year-old former healthcare worker at Auschwitz might make the position of conscientious objectors a bit more plausible.

SS sergeant Hubert Z. (his surname is being withheld because of Germany's privacy laws), was employed at Auschwitz from October 1943 to January 1944 and worked as a paramedic there for one month, from August 15 to September 14, 1944.

During that month, 14 trains transporting Jews from all over Europe, including the teenage diarist Anne Frank, arrived and their passengers were sent to the gas chambers. Mr Z. did not participate in the killings. However, according to a report in the Sydney Morning Herald, “the prosecution's office holds that he was aware of the camp's function as a facility for mass murder. By joining its organisational structure, he consciously participated and even accelerated the deaths of thousands of people.” He is being charged with complicity in 3,681 deaths.

Last July 94-year-old Oscar Groening, who was dubbed “the bookkeeper of Auschwitz”, was convicted and sentenced to four years in jail, even though he had no direct involvement in the deaths of the camp’s inmates.

Before the conviction of Ukranian-American camp guard John Demjanjuk in 2011, German authorities refrained from prosecuting “cogs in the machine”. Since then, however, several people have been brought to trial. A 91-year-old woman who worked as a radio operator at Auschwitz has been charged with complicity in 260,000 deaths. Her trial will go ahead later this year in the northern city of Kiel if she is found fit.

Perhaps it makes sense for doctors to have misgivings about being complicit in controversial procedures. What is legal now may be condemned in the future and “effective referral” might not be accepted as an excuse. In any case, cooperation in evil is a subtle and complex topic. 





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Male pregnancy a real possibility


The idea of male pregnancy was once reserved for comedy (remember the pregnant Arnold Schwarzenegger in Junior?) or trash TV shows about bearded transgender men using their own wombs and donated sperm. Yet some now think childbearing for biological males is only five or ten years away.

Researchers based at the University of Gothenburg in Sweden successfully transplanted a womb into a 36-year-old woman in 2013 and in 2015 that woman gave birth to a healthy boy. The researchers are confident that the procedure can be refined and administered to many more women in the future.

Could it perhaps be administered to a man, asked Dr David Warmflash, a physician and science writer, in a recent Genetic Literacy Project blog post.

“The logical progression before one transplants a uterus into a man, or a former man, is to transplant one into a woman. That step has been achieved… unlike with a male patient, a female patient has the needed blood supply for a uterus present… a naturally-born female is a more biologically compatible recipient for a donated womb than someone who was born male, even if no-longer male externally… That said, there’s no technological or medical reason why a man could not receive a donated uterus. While there are no uterine vessels or pelvic ligaments to connect, such structures could be created.”

Would there be a demand for such a procedure? “I’d bet just about every transgender person who is female will want to do it, if it were covered by insurance,” says Dr Christine McGinn, a plastic surgeon, a consultant on the Oscar-nominated film The Danish Girl. “The human drive to be a mother for a woman is a very serious thing. Transgender women are no different.”

But probably only wealthy transgender people. The bill could be well over US$1 million. Insurance companies are unlikely to pick up the tab. “It’s a class issue; you’ll only have wealthy people able to do this,” says Dr McGinn. 




MORE ON THESE TOPICS | transgender, uterus transplant, womb transplant

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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Surrogacy comes to Vietnam


Vietnam's Deputy Minister of Health cradles the country's first surrogate baby at a hospital in Hanoi   

As Thailand closes it doors to commercial surrogacy, another South East Asian nation has tentatively begun to utilize surrogacy for couples unable to have children.

Early last year Vietnam amended its marriage and family legislation to allow altruistic surrogacy. Under new regulations, couples must have not yet had a child, and must show that they are unable to conceive, even with IVF.

Three hospitals in Vietnam now offer the procedure, and there have been over 100 applications from couples seeking a surrogate solution. The country’s first surrogate baby was born on Friday in a maternity hospital in Hanoi.  

Couples eligible for the procedure are very excited about the possibility of having a child. Officials say that they have been unable to meet the current demand.

Some doctors remain circumspect. Dr. Hoang Thi Diem Tuyet, head of the department reserved for women who meet with difficulties in child-bearing at the Tu Du Hospital in HCM City, fears that the procedure might become commercialised. "Surrogacy is a double-edged knife -- on the one hand it supports the women to enjoy their legitimate right of being a mother, but on the other hand it can hurt them if it is misused for commercial purposes”, she told Xinhua news




MORE ON THESE TOPICS | surrogacy, Vietnam

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Embryo custody battles on the rise


In recent years more and more couples quarrelling over embryos from the sunnier days of their relationship have appeared in court. The latest story to hit the US press was that of Jalesia McQueen and Justin Gadberry, a divorced Missouri couple fighting for custody of 10-year-old embryos.

Two embryos were “left over” after McQueen and Gadberry used IVF to have their twin boys, now 8. A Missouri County Court ruled that the couple ‘jointly’ owns the remaining embryos, but McQueen and Gadberry are at loggerheads. She wants to have more children; he wants have the embryos destroyed.

Late last month McQueen appealed the ruling to the Missouri Court of Appeals, saying that the embryos are living beings and should not be destroyed. "When you go through this process and see these embryos created, they're your babies," McQueen said Wednesday at news conference at the Old Courthouse in downtown St. Louis, the historic building where 19th century slave Dred Scott fought to gain his freedom.

McQueen’s very public appeal is indicative of a broader trend in embryo disputes: affected parties have increasingly been appealing to the legal status of embryos as persons to prevent their destruction.

A pro-life organisation, Missouri Right to Life (MRL), has become heavily involved in McQueen’s appeal, and even fronted the press with her. "Natural law tells us the African-American male is not human property," said Gerard Nieters, MRL legislative director. "And it tells us that frozen embryos are not human property."

No US jurisdiction treats embryos as persons or entities entitled to constitutional protection. 

Yet there are a number of briefs being prepared for courts regarding personhood of embryos. The Chicago-based Thomas More Society, which is providing legal assistance to McQueen, has filed a “personhood” request in Los Angeles in a dispute between "Modern Family" star Sofia Vergara and ex-boyfriend Nicholas Loeb, who wants custody of the frozen embryos they created before breaking up. The Society says that there is legislation in a number of US jurisdictions stating that life begins with conception. 




MORE ON THESE TOPICS | embryo custody

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Catastrophic result in clinical trial in France


One man has been pronounced brain dead and another six are in a critical condition after a stage-one pain-relief drug trial was carried out in France.  

The men were among 90 participants in the trial of an endocannabinoid inhibitor produced by the Portuguese pharmaceutical firm Bial.

The drug, a so-called FAAH inhibitor, was intended to reduce pain in the patients. The affected patients, however, have experienced serious adverse side effects and some face permanent handicaps.

The brain dead patient was admitted hospital in Rennes on Monday. Other patients went in on Wednesday and Thursday. The trial, which has only been running for a week, was cancelled after the incidents were reported. All patients taking part in the trial have been called back for medical examination.

French officials expressed their concern about the incident, but argued that the trial was carried out in accord with existing regulations.

In 2006 a leukaemia drug trial in the UK at Northwick Park Hospital resulted in the hospitalisation of six men, some of whom now have permanent disabilities.  

Dr Ben Whalley, a neuropharmacology professor at Britain’s University of Reading, said standardised regulations for clinical trials were “largely the same” throughout Europe. “However, like any safeguard, these minimise risk rather than abolish it,” Whalley said. “There is an inherent risk in exposing people to any new compound.”

Dr Anna Smajdor, lecturer and researcher in biomedical ethics, University of East Anglia’s Norwich Medical School, is awaiting more information:

“Phase one trials often involve young participants who take part in return for payment. The nature of clinical research means that every so often, people will be seriously harmed or even killed in the process of research, there is no way round this.

“The question in this case is whether, as in Northwick Park, there were any failures of protocol that meant participants suffered more damage than necessary – in Northwick Park, they administered the drug to all volunteers at once instead of staggering it so they could avoid a bad reaction affecting all of the participants.”




MORE ON THESE TOPICS | clinical trials

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How much treatment do heroin addicts deserve?


American heart surgeons are making the difficult decision not to provide surgery to heroin addicts who present repeatedly with drug-induced heart valve infections.

A number of stories in recent months have described in detail the doctors’ dilemma: having to chose between another heart valve replacement for addicts (sometimes costing more than US$500,000), or refusing to operate on them again. A heart valve replacement operation requires patients to abstain from drug use in the months following the procedure, but most heroin addicts are non-compliant.

Doctors feel that repeat operations are a poor allocation of healthcare resources. “This costs a lot of money,” says Scott H. Bronleewe, an experienced cardiac surgeon practicing in Tampa, Florida. “Six to eight weeks of a hospital stay and surgery probably amounts to over $500,000. Most if not all have no insurance coverage.”

Clinical ethicists say that doctors have no obligation to repeatedly operate on non-compliant patients. “If an individual isn’t going to change behavior and take responsibility for their life, the surgeon really doesn’t have an obligation to replace that heart valve a second or third time”, Dr James Orlowski, paediatrician and medical ethicist, said.

Many, however, believe that heroin addicts have limited responsibility for their continued use. Sarah Suzuki, a substance abuse counsellor in Chicago, believes that abstaining from drugs is not an easy feat for those with serious addiction issues.

“Contrary to popular belief, people who are addicted to heroin don’t experience a rush of pleasure or joy when they use”, she told Medill Reports early last year. “Rather, they stave off withdrawal symptoms and maintain a sense of equilibrium.”

Heroin use is on the rise across the US, according to statistics from the Centers for Disease Control and Prevention.

Sharon Kelley, CEO of Associates in Emergency Medical Education, called the issue an ongoing “ethical quandary for doctors”. 




MORE ON THESE TOPICS | patient compliance

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Another controversy over futile care in Texas


Chris Dunn in hospital bed before Christmas   

Medical ethicists have clashed over the death of Chris Dunn, a Texan man at the centre of an end-of-life care legal battle.

Dunn, 46, died late last month, following a year-long battle with apparent pancreatic cancer. Certain members of his family were petitioning a court to mandate the continuation of life-sustaining treatment. A medical ethics committee at Houston Methodist Hospital, acting on advice from one of Dunn’s doctors, deemed ANH to be inappropriate and decided to allow his doctor to discontinue life-sustaining treatment.

Some of the details of the case remain unclear. It is perhaps best merely to quote the differing opinions that have been offered following Dunn’s death.

In an essay in The Public Discourse earlier this month, paediatrician Phillip Hawley Jr. argued that the decision of the hospital to Dunn’s life-sustaining treatment was tantamount to ‘death by committee’:

“Having participated in many treatment discussions on behalf of terminally ill patients, I will readily acknowledge that patients and families sometimes have unrealistic hopes for a cure. However, acknowledging this possibility does not redeem a badly flawed law or vindicate a morally corrupt decision. In deciding to withdraw life-sustaining treatment from an alert and cognizant patient who so obviously wanted to continue living, the hospital and its ethics committee stole from him the two most fundamental rights enumerated in our Constitution: life and liberty.”

Hawley argues that there is evidence to suggest that Dunn was still capable of rational decision-making, and that, in any event, it was unjust for the hospital to attempt to override the wishes of his family members who wanted ANH to continue.

“Relative strangers with little or no knowledge of his values and beliefs weighed his “quality of life” and decided that he no longer deserved to live…

“On many occasions, I have watched anguished parents struggle to discern what is in the best interest of their terminally ill child—a child they have known since birth…But, somehow, we are to believe that these committee members were able to deduce existential truths about what was in Chris Dunn’s best interest?”

Dr. Beverly B. Nuckols, a family physician from Texas, and Deirdre Cooper, a public policy analyst at Texas Alliance for Life, penned a terse reply. Cooper and Nuckols suggest that, on the evidence available, it seems that the decision to discontinue Dunn’s ANH might have been justified. They take issue with what they see as the Hawley’s attribution of murderous intentions to the hospital staff and ethics committee.

“This is not simply a case of a hospital or a doctor versus the patient and his family. Rather, this is a case of an incapacitated patient who was terminally ill, whose parents disagreed about the best course of treatment, and whose doctors believed that life-sustaining treatment was causing suffering, as is plainly evident from court documents

“It is plausible that the doctors had good reasons to believe that the pancreatic cancer was untreatable. They may have believed that attempts to maintain the status quo would be medically ineffective, would not save his life, and would increase physical pain and bodily damage while possibly hastening death…”

The case of Chris Dunn is another controversy caused by Texas’s Advance Directives Act (or futile care law), which allows doctors to discontinue life-sustaining treatment ten days after giving written notice if life-sustaining treatment is deemed futile. 




MORE ON THESE TOPICS | futile care, Texas

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UK on verge of editing genome of human embryos


Scientists in the UK could begin genetically engineering human embryos as early as March, if the fertility regulator approves plans by researchers at the new Francis Crick Institute in London.

The Human Fertilisation and Embryology Authority meets next week to review the application.

A team led by Kathy Niakan plans to study how embryos develop by systematically disabling genes using the new CRISPR technique for gene editing. They plan to use embryos left over from IVF treatment which have been donated to science. After they have been studied, the embryos will be destroyed at 7 days.

She estimates that 80% of the embryos will be useful. “If we start off with good quality zygotes, this is likely to work efficiently,” she said at a press conference. Her project involves 3 or 4 genes, with about 20 to 30 embryos required for each of them, bringing the total of embryos to be destroyed to a possible 120.

When the technique for editing the embryos has been mastered, it is all but inevitable that it will be used to create embryos which are free of genetic diseases. However, some critics warn that this is the high road to designer babies. Dr Calum MacKellar, Director of Research of the Scottish Council on Human Bioethics told The Telegraph (London):

“Allowing the gene editing of embryos opens the road to genetically modifying all the descendants of a person as well as full blown eugenics which was condemned by all civilised societies after the Second World War. It is the very future of the way in which societies accept persons with disabilities that is at play since such gene editing procedures infer that they should not have been brought into existence.”




MORE ON THESE TOPICS | CRISPR, embryo research, 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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Canadian doctors should not be forced to refer for euthanasia, says association


Canadian doctors should not be forced to refer patients for euthanasia if they feel that complicity is “morally abhorrent”, says the Canadian Medical Association (CMA), the national voice for Canadian physicians.

In a strongly worded appeal, it urges the College of Physicians and Surgeons of Ontario (CPSO), the government regulator in that province, not to mandate “effective referral”. After surveying its members the CMA says that some doctors are willing to perform euthanasia and most are willing to refer if they choose not to do it. But most also support the right of conscientious objectors not to participate in any way. “The only way to authentically respect conscience is to respect differences of conscience,” the CMA says.

The CPSO wants to guarantee that all patients should have access to euthanasia. However, the CMA argues that this is the responsibility not of doctors but of the community. It sums up its argument as follows:

It is in fact in a patient's best interests and in the public interest for physicians to act as moral agents, and not as technicians or service providers devoid of moral judgement. At a time when some feel that we are seeing increasingly problematic behaviours, and what some view as a crisis in professionalism, medical regulators ought to be articulating obligations that encourage moral agency, instead of imposing a duty that is essentially punitive to those for whom it is intended and renders an impoverished understanding of conscience.

The CMA statement was published on the Protection of Conscience Project.




MORE ON THESE TOPICS | Canada, conscience, conscientious objection

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UK think tank to investigate cosmetic procedure industry


A prominent bioethics think tank in the UK, the Nuffield Council for Bioethics, has launched a public inquiry into cosmetic procedure industry and the ethical implications of its rapid growth and diversification. The Council hopes to gather information about a number of areas.

Definitions. What differentiates cosmetic from reconstructive or therapeutic procedures?

Risk: Many clients regard procedures as normal and are not sensitive to the risks involved. A 2013 government report found that “the public is consistently underestimating what is involved in having a cosmetic intervention.”

Normalisation: increasing demand means that some procedures are becoming routine, rather than exceptional. Experts are concerned that beauty is becoming stereotyped, increasing pressure on those whose appearance does not conform to these norms.

Popularity. Why has there been such explosive growth in this sector? The Council lists some possible explanations: “increasing affordability; technological change making more procedures available; the pervasiveness of celebrity culture; the development of digitally manipulated photographs (leading to ever-more unrealistic representations of beauty); the rise in the use of social media (including the trend of postings ‘selfies’ online) and self-monitoring apps; and easier access to pornography depicting unrealistic images of what is normal or desirable. In the context of the UK, these proposed explanations are also embedded in a society where body image is poor compared with other countries.”

Regulation. there is little government regulation of cosmetic enhancement and some unqualified doctors, nurses, dentists and beauty therapists are providing services. Discussion is also needed about demand for services. Should parents be able to authorise cosmetic procedures? Should people with a body dysmorphic disorder? Should advertising be regulated?

Which parts of the body? There are fashions in cosmetic surgery. In 2014, fewer women sought breast augmentation, but there was higher demand for more subtle effects like eyelid surgery, facelifts and fat transfers. There is growing interest in female genital cosmetic surgery and penis enlargements, for which the ethical, legal and psychological risks may be different. Other procedures are becoming more common such as limb-lengthening surgery, the removal of additional fingers or toes, and gender reassignment. Is special regulation required for some of these?

Professor Jeanette Edwards, Chair of the Council’s Working Party, said: “Concerns over the increasing use of Botox and fillers, as we have seen frequently discussed in the media, highlight some critical questions about the role and responsibilities of health professionals, the adequacy of current regulation, and the potential risks to users. We are also interested in exploring the various drivers for the increasing use of a wide range of surgical and non-surgical cosmetic procedures, including social and media pressures that influence people’s decisions to seek cosmetic procedures as a way of enhancing or ‘normalising’ their appearance.”

(If you would like to respond, contact Kate Harvey at kharvey@nuffieldbioethics.org, with ‘Cosmetic procedures’ in the subject line.)





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 US medicine becoming an assembly line?


Frederick Taylor (1856-1915), one of the first management consultants, helped to make American manufacturing great by discovering the most effective and time-saving way of directing employees to their work. “In the past, the man has been first; in the future, the system must be first” summarises his philosophy.

Two physicians from Beth Israel Deaconess Medical Center and Harvard Medical School in Boston complain in the latest New England Journal of Medicine that “Taylorism has begun permeating the culture of medicine” with the implementation of electronic health records. Here are excerpts from their attack on what they believe to be a drive to treat patients like cars on an assembly line:

Physicians sense that the clock is always ticking, and patients are feeling the effect. One of our patients recently told us that when she came in for a yearly “wellness visit,” she had jotted down a few questions so she wouldn’t forget to ask them. She was upset and frustrated when she didn’t get the chance: her physician told her there was no time for her questions because a standardized list had to be addressed — she’d need to schedule a separate visit to discuss her concerns.

We believe that the standardization integral to Taylorism and the Toyota manufacturing process cannot be applied to many vital aspects of medicine. If patients were cars, we would all be used cars of different years and models, with different and often multiple problems, many of which had previously been repaired by various mechanics. Moreover, those cars would all communicate in different languages and express individual preferences regarding when, how, and even whether they wanted to be fixed. The inescapable truth of medicine is that patients are genetically, physiologically, psychologically, and culturally diverse. It’s no wonder that experts disagree about the best ways to diagnose and treat many medical conditions, including hypertension, hyperlipidemia, and cancer, among others.

To be sure, certain aspects of medicine have benefited from Taylor’s principles. Strict adherence to standardized protocols has reduced hospital-acquired infections, and timely care of patients with stroke or myocardial infarction has saved lives. It may be possible to find one best way in such areas. But this aim cannot be generalized to all of medicine, least of all to such cognitive tasks as eliciting an accurate history, synthesizing clinical and laboratory data to make a diagnosis, and weighing the risks and benefits of a given treatment for an individual patient. Good thinking takes time, and the time pressure of Taylorism creates a fertile field for the sorts of cognitive errors that result in medical mistakes. Moreover, rushed clinicians are likely to take actions that ignore patients’ preferences….

Medical Taylorism began with good intentions — to improve patient safety and care. But we think it has gone too far. To continue to train excellent physicians and give patients the care they want and deserve, we must reject its blanket application. That we’re beginning to do so is shown, for example, by a bill before Congress that would delay implementation of the Meaningful Use Stage 3 criteria for information-technology use in health care. We need to recognize where efficiency and standardization efforts are appropriate and where they are not. Good medical care takes time, and there is no one best way to treat many disorders. When it comes to medicine, Taylor was wrong: “man” must be first, not the system.




MORE ON THESE TOPICS | commercialization, patient care, Taylorism

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British man has fathered 800 children


Another chapter in the Wild West of reproductive technology: the British man who has fathered 800 children and hopes to reach 1000. Simon Watson, 41, has been helping desperate women for 16 years. Married twice, with three children of his own, he advertises his services on Facebook.

Bertold Wiesner,  an obstetrician in London in the 1940s, was the father of about 600 children at his own fertility clinic, but it now appears that Mr Watson has beaten him.

"Usually one [baby] a week pops out. I reckon I've got about 800 so far, so within four years I'd like to crack 1,000," he told the BBC. "I've got kids all the way from Spain to Taiwan, so many countries. I'd like to get the world record ever, make sure no-one's going to break it, get as many as possible." Sperm donors at a conventional IVF clinic are limited to 10 children.

Typically Mr Watson meets his clients at a petrol station and hands over his donation. He charges 50 Pounds. "If you go to a fertility clinic people have to go through lots of hurdles - counselling sessions, huge amounts of tests and then charge absolute fortunes for the service - but realistically if you've got a private donor you can just go and see them, meet them somewhere, get what you want and just go," he explained.

Mr Watson’s business is not illegal in the UK, but his clients risk sexually transmitted diseases and birth defects – apart from the fact that their child will not have a father.

Laura Witjens, chief executive of the National Gamete Donation Trust, a government body which regulates sperm and egg donation for IVF clinics, is scathing.

"There are too many occurrences where in other circumstances it would be called sexual harassment or rape." She says that sentimental talk about helping women to become pregnant is claptrap. "If you strip it down to bare facts, you have a man who for whatever reason feels they need to impregnate over 500 women, you have women who are comfortable knowing their children have 500 half siblings, in another setting people would be appalled. They would ask questions, find it very disturbing."

Mr Watson is looking for a girlfriend at the moment, but finds that listing his profession as “sperm donor” is a turn-off for most women. 




MORE ON THESE TOPICS | sperm donation, UK, Wild West

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Making eugenics fun in Belgium


Waffles, beer, chocolate and euthanasia: Belgium is famous for all of them. Will do-it-yourself eugenics be added to the list?

Creative Belgium, an industry group which promotes creativity in Belgian advertising has partnered with the Centre for Reproductive Medicine of Brussels and ad agency Air to advertise sperm donation.

Apparently there is a need for a new generation of creative advertising executives since fewer younger Belgians are taking up careers in advertising. "The number of students in creative fields has actually declined," says Greet Wachters, manager of Creative Belgium. "Those who opt for creative studies don't always end up looking for work in agencies." 

Solution? Lots of vials of creative sperm in an IVF clinic.

Creative Belgium persuaded several prize-winning executive from different agencies to donate and then created an ad campaign. The poster depicts one of the men with the words, "Are you in the creative industry? Become a donor." There’s also a video with sheepish male "creatives" and smirking female "creatives" discussing the initiative. 

An article in Adweek failed to mention any scientific studies on the genetic basis for creativity, and in fact Creative Belgium’s initiative seems to be based more on marketing than on genetics. So it's hard to know how to read this stunt. If it's not a hoax, it illustrates how little creative types know about science. If it is a hoax, it illustrates how trivialised sex has become. 




MORE ON THESE TOPICS | Belgium, eugenics, sperm donation

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Defending Catholic views on contraception


Although, with more than a billion members, the Catholic Church has immense influence on bioethical practice, its positions are rejected by many bioethical theorists. None is more disputed, even ridiculed, than its condemnation of contraception. However, this stand does have thoughtful defenders. In Catholic circles, one of the best known is Janet Smith, an American classical scholar turned bioethicist and moral theologian. She is a popular lecturer, serves on Vatican committees, and has appeared on Fox Morning News, CNN International, CNN Newsroom, Al Jazeera and EWTN.

Dr Smith has a knack for making for making the Catholic stand on contraception plausible. Most people believe that it has something to do with the abortifacient effects of “the pill”, but that is essentially a secondary consideration.

The Jesuit magazine America recently interviewed her about her work. Here are some excerpts.

In your own words, what is the Catholic view of human sexuality?

I think it can best be found in John Paul II’s “Theology of the Body.” Our sexuality has a spousal meaning; it manifests that we are meant to be gifts to each other and that from that gift new life is to come. It discloses the most profound way that we image our Creator: we are meant to be lovers and givers of life. Both literally and spiritually.

You once recorded a popular audio talk called “Contraception: Why Not.” In summary form, what do you believe is the best argument against contraception?

That talk depends a surprising amount on consequentialist arguments—the argument that contraception has had terrible consequences, for women, for relationships, for children, for the culture. I take that approach largely to get people’s attention and because it is true and explains a lot of the problems our culture has—unwed parenthood, fatherless children, divorce and even poverty.

And once people have been shaken out of their stupor, I give the stronger non-consequentialist reasons. I explain that contraception treats fertility and children as threats to human happiness rather than inestimable gifts. I explain that the language spoken by bodies that have their fertility voluntarily shut down is a very different language than that spoken by bodies that reverence the gift of fertility. One is a language of a momentary union, the other is the language directed towards an unlimited future with another.

From your perspective, what is the strongest part of “Humanae Vitae” [the 1968 document which affirmed the traditional ban on contraception]?

That it has elements of John Paul II’s personalism in it and thus combines both natural law terminology and personalist concepts. Speaking of the spousal act as having both a procreative and unitive meaning is a striking claim; it shows that the spousal act is not merely biological; it is a means of communication. To communicate through the bodily act of spousal intercourse to another that one wishes to have a lifetime union with him or her is inseparable from the communication that one is willing to be a parent with another. What a statement it is to say “I am willing to be a parent with you.” For those who have any idea what is involved it is a phenomenal statement of affirmation.

The spousal act should always be a phenomenal act of affirmation: “I belong to you in a way in which I belong to no one else. I am willing to be a co-creator of a new life with you and all that that involves.” Clearly “Humanae Vitae” does not see the sexual act as something strictly biological or physiological. One should be willing to be a parent only with one whom one loves, with one whom one is willing to spend one’s entire life. Contraceptive sex does not have written into it a pledge of a lifetime union; it has been reduced to a rather momentary act. Spousal intercourse that respects and does not violate the procreative possibility of the sexual act, retains the message that one is willing to be a parent with another and thus to be in a lifetime union with another.




MORE ON THESE TOPICS | Catholic Church, contraception

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Demented patients can be euthanized in Netherlands


The Netherlands health ministry has revised its guidelines to allow severely demented patients to be euthanized. However, an advance directive which was made when the patient was lucid is required.

The guidelines acknowledge that patients often do not seem to be suffering unbearably because of their dementia. However, they still suffer from conditions like severe anxiety and pain. “In those cases a doctor may give euthanasia, even if a patient can not make it clear in words or gesture,” says the ministry. “But there has to be a written request for euthanasia, that the patient drew up earlier.”

The guidelines were updated to make the position of doctors more legally secure. Some demented patients have been euthanized, but there is uncertainty about whether or not such actions were lawful. Hence, many doctors refuse to euthanise their demented patients.

The guidelines include instructions for drafting a euthanasia declaration. Patients are encouraged to keep in touch with their physicians to ensure that their wishes are carried out.

Other news on the Dutch euthanasia front: the Dutch medical association, the KNMG, has declared that doctors should have the right to refuse to perform euthanasia. It is alarmed by news that the Dutch right-to-die association is lobbying for a “last wish pill” which would allow patients to kill themselves, although it would have to be prescribed by a doctor.

“Euthanasia is just one of the options, there must be room for consideration. Do we want the government to allow an end of life pill being available to everyone? How do we protect the vulnerable against pressure from the environment, against their own impulsive acts?” said Rutger Jan van der Gaag, chairman of the KNMG. “The doctor is now at least an important safety valve which ensures that reasonable alternatives can not be overlooked and euthanasia resources are not misused … it never becomes ‘you ask, we inject’.”




MORE ON THESE TOPICS | dementia, euthanasia, Netherlands

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ISIS has authorised forced organ removals of ‘apostates’


Persistent rumours about organ trafficking by the Islamic State have some basis in fact. Amongst a trove of documents captured by US troops in a May raid in Syria is Fatwa 68, dated January 15, 2015. The opinion, issued by the Islamic State’s “Research and Fatwa Committee”, states unequivocally that organs may be taken from “apostates” without their consent, and even if it causes their death.

However, no proof has been found that organs have in fact been removed from ISIS captives. Nor is it clear who would be classified as an “apostate” by the extremist Sunnis who support ISIS. In the past Yazidis, Christians and other non-Muslims have been described as apostates, but also Shias and Sunnis who disagree with the ISIS.

The reasoning behind the fatwa is based on arguments by Islamic jurists justifying cannibalism in extreme circumstances. (This is a translation by the US government.)

If the jurists had permitted, when necessary, the consumption of human flesh as a means counter to death or harm, then it is even more appropriate to transplant of organs from the apostate to the Muslim to save the life of the latter. This is especially the case since it was ruled that the apostate's life and organs are not protected. On the contrary, the apostate's life and organs don't have to be respected and may be taken with impunity.

Based on aforementioned, the categories of the apostate's organs are broken down into the following cases:

1-The rule is applicable on organs that could be put to use in both cases- pre and post-mortem.

2- The organs that can only be used pre-modem, and those are divided into two groups:

a-- Organs the removal of which would not be fatal: It is not prohibited to remove this type of organs from a living body as death would defeat the purpose.

b -- Organs the end the captive's life if removed: The removal of that type is also not prohibited, even if it is fatal for the captive. A group of Islamic scholars have permitted, if necessary, one to kill the apostate in order to eat his flesh which is part of benefiting from his body. This encompasses everything that it needed to be taken from the apostate's body.

Iraq’s ambassador to the United Nations, Mohamed Ali Alhakim, says that the documents should be examined by the UN Security Council as evidence that Islamic State could be trafficking in organs to raise cash. He claims that 12 doctors in Mosul were executed in February after they refused to remove organs.





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Treat surrogate parents as sex offenders, says Italian minister


Angelino Alfano   

Surrogate parents should be treated as sex-offenders and jailed, according to Italy’s interior minister, Angelino Alfano. He described surrogacy as “the most vile, illegal trade that man has invented" in an interview with the Avvenire newspaper. "We want wombs-for-rent to become a universal crime, which is punished with a jail term. Just as happens for sex crimes.”

Surrogacy is  currently illegal in Italy. So gay couples have used foreign surrogates, but the legal status of their children is shaky and has led to a number of wrangles in the courts.

Italy has not given same-sex couples rights or protection on issues such as parenthood – one of the last Western hold-outs. The European Court of Human Rights condemned it last year for failing to pass legislation on the hugely contentious issue. Centre-left Prime Minister Matteo Renzi was determined to pass legislation legalising civil unions last year, but failed.

Alfano is a member of a coalition partner, the New Centre Right party, which rejects surrogacy, same-sex adoption -- although it is not opposed to civil unions.

At the moment, the debate in Italy is over whether a partner in a same-sex couple should be able to adopt his “step-child” so that he also has parental rights. Alfano is strongly against this. “Stepchild [adoption] really risks bringing the country closer to wombs-for-rent,” he says. 




MORE ON THESE TOPICS | Italy, surrogacy, surrogate motherhood

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Gay Israeli couple brings home wrong baby from Nepal


In a stark reminder of the hazards of IVF and surrogacy, a gay Israeli couple had an unpleasant surprise earlier this month about a baby daughter they had commissioned in Nepal.

A routine genetic test back in Israel proved that the girl was not genetically related to them. They had to return the infant to Nepal and give it to a heterosexual couple. The gay couple is now awaiting the birth of another baby which should be related to them.

Surrogacy is legal in Israel only for heterosexual couples, so gay couple are forced to employ surrogate mothers overseas. Nepal was a popular destination until recently, when the country declared a moratorium on the practice to assess its legality.

The Israeli surrogacy agency Tamuz, which brokered the pregnancy, said that the mix-up was a rare case of “human error”. However, The Times of Israel interviewed experts who suggested that such errors might not be that rare. Another surrogacy agency told the newspaper that Israeli IVF clinics also make mistakes but that “there’s no need for genetic testing, so it can’t be proven.”

Dana Magdassi, the owner of another agency said: “It’s a very serious human error, but it doesn’t only happen overseas. I think it happens much less overseas, because the doctors know that at the end of the process, it’s obligatory to do a genetic test, so they’re doubly careful.” 




MORE ON THESE TOPICS | Israel, IVF, IVF mixup, Nepal, surrogacy

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US should stop physician participation in detainee force-feeding, say ethicists


The US government should rescind directives authorizing participation of health professionals in interrogation and force-feeding because they are inconsistent with professional ethics, argue ethicists in PLoS Medicine.

A 2015 report of the Defense Health Board found that the Department of Defense “does not have an enterprise-wide, formal, integrated infrastructure to systematically build, support, sustain, and promote an evolving ethical culture within the military health care environment.” 

The Board declared that health care professionals should not have to perform medical procedures that violate their professional code of ethics, State medical board standards of conduct, or the core tenets of their religious or moral beliefs.

In the wake of scandals about torture of detainees at Guantanamo Bay and other sites run by the CIA or the military, the government accepted most of the Board’s recommendations.

However, there were some loose ends. “The Board’s failure to call for a prohibition of any military health professional involvement in interrogation or force-feeding hunger strikers in its recommendations is a serious deficiency. It should also have recommended transparency and oversight in the reform process,” say Leonard S. Rubenstein, of Johns Hopkins University and co-authors in the PLoS article.

They conclude with a ringing call for respect for conscientious objection:

“Health professionals who have volunteered to serve for their country should never be asked or directed to violate their professional ethics, nor be allowed to be instruments in detainee abuse. To be true to their role in setting ethical standards for practice and creating an environment that enables health professionals to follow them, professional associations must do everything in their power to make sure that military rules do not require health professionals to choose between service to their country and ethical practice.”





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Hammering out the details in Canada’s new euthanasia regime


Last February Canada’s Supreme Court declared that denying patients access to assisted suicide and euthanasia is a violation of their human rights. The federal, provincial and territory governments were given a year – until February 6, 2016 -- to enact legislation consistent with its decision.

This week the Provincial-Territorial Expert Advisory Group on Physician-Assisted Dying released a report with points which should be incorporated into legislation throughout Canada. The changes to the legal system and medical practice are massive and unprecedented. There are only two months to go before the Supreme Court’s deadline, although the federal government has requested a six-month extension to ensure "a thoughtful, sensitive and well-informed response."

It’s hard to predict whether all of the Advisory Group’s 43 recommendations will be implemented in all of Canada’s 11 jurisdictions. But if they are, Canada will have the world’s most advanced euthanasia legislation – even more progressive than the Netherlands and Belgium, which are currently the world leaders.

Another panel, appointed by the Federal government when conservative Stephen Harper was prime minister, has also submitted a report, which has not yet been made public. Two of its three members argued against assisted dying before the Supreme Court, and its recommendations are bound to be quite different. However, October’s election brought in a new government which supports assisted dying, so the report may end up in the dustbin.

The Supreme Court held that a competent adult person who clearly consents and has a grievous and irremediable medical condition that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition may be offered physician-assisted dying. With these conditions as a foundation for legislation, the Advisory Group hammered out its recommendations. It acknowledges that “the idea of physician-assisted dying remains ethically challenging for some”. But it does not appear that it tried to accommodate the dissenters.

Here are some of the more contentious recommendations.

  • The unfamiliar term of “physician-assisted dying” (PAD) includes both euthanasia and assisted suicide. It should become an integral part of Canada’s palliative care system. It should be publicly funded.
  • Although the “P” in PAD refers to physicians, a registered nurse or a “physician assistant”, a Canadian term for a trained health professional, can also should be able to write a prescription for a lethal drug or give a lethal injection.
  • There should be no age limits for PAD: “eligibility for physician-assisted dying is to be based on competence rather than age.” This means that a 12-year-old could request euthanasia. Or a 7-year-old. 
  • The terms “grievous and irremediable” should not be defined in legislation or regulations. The patient will define what constitutes intolerable suffering.
  • Two physicians must approve a request for PAD, but neither of them need special qualifications in psychiatry or in the disease from which the person is suffering.
  • Canada is a vast country and physicians are not always readily available. Therefore virtual assessments over the internet should be available.
  • There should not be a cooling-off period. “Rather, the time between initial request and declaration will vary according to the time it takes for the attending and reviewing physician to be confident that the declaration is free and informed and made by a competent individual.”
  • The death certificate should list the cause of death as the underlying medical condition, not PAD. However PAD should be listed as “the manner of death”.
  • Neither the Supreme Court nor the Advisory Group are sympathetic to conscientious objection. A doctor who refuses to provide PAD must refer. A faith-based institution will not be required to provide PAD, but must transfer the patient’s records to another institution. It must also allow PAD to take place on its premises.
  • Provinces and territories should provide public education about PAD. This is a broad and ambiguous recommendation which could encompass classes in schools as well as information provided to patients and doctors.

Unsurprisingly, the report provoked very different reactions. In the Globe and Mail, André Picard described it as a refreshing step forward. “iI doesn't rehash age-old arguments about whether assisted death is right or wrong, moral or immoral, legal or illegal. Rather, the starting point is that, given the Supreme Court ruling, this is going to happen, so it should happen in a clear, coherent fashion.”

But in the National Post, Andrew Coyne decried “the absurd logic of assisted suicide”. He points out that the rationale for the decision and subsequent legislation is “unlimited personal freedom”. PAD is being sold “as a release from suffering; not as an evil to be prevented, but as a service to be provided (indeed, the panel recommends it be done at public expense). This presents the right to die, not as a limited one, such as the right to drive, but as an unlimited one, inhering in all persons — rather like the right to life.”




MORE ON THESE TOPICS | Canada, euthanasia

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When Ebola breaks out again, whose fault will it be?


The West African ebola outbreak has been largely contained. Now the world can sit back, breathe a sigh of relief and mutter, “that was a wake-up call”.

Not.

The message of two ethicists from the University of Toronto is that the Ebola epidemic signals a profound moral failure on the part of complacent Western nations. Like an alarm clock at the bedside, they keep hitting the snooze button rather than grapple with the hard questions of developing emergency plan and fixing battered healthcare systems. “We either have collective amnesia or collective narcolepsy,” write Maxwell J. Smith and Ross E.G. Upshur in an Oxford University Press blog, based on their article in Public Health Care Ethics.

“In practice, this translates into not only investing in global outbreak surveillance infrastructure, but also strengthening health systems in the worst-off countries. This latter crucial point has been acknowledged, but unfortunately has largely received only lip service.”

The SARS and H1N1 influenza outbreaks taught public health experts and governments valuable lessons. But once learned, they were quickly forgotten.

By failing to adequately engage communities in outbreak response, instituting travel bans and restrictions, and declining to share valuable data and tissue, this outbreak saw the adoption of policies and practices that fostered distrust and ran antithetical to the ethics lessons we have purportedly ‘learned’ from past outbreaks. It is as if past lessons have been wiped from our collective memory.

They point out that the main obstacle to successfully combating epidemics is moral, not technical. There is simply not enough commitment. “We cannot entirely prevent infectious disease outbreaks from occurring,” they write, “however, we can strive to ensure our moral failures are not repeated.”




MORE ON THESE TOPICS | Ebola, epidemics, public health

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Mexico closes door to cheap surrogate mothers


Surrogate mothers in the surrogacy agency home last year. The agency was forced into involuntary bankruptcy and is being investigated by the FBI.

After India and Thailand, another country has slammed its doors on foreigners seeking surrogate mothers. The Mexican state of Tabasco, the only one which allowed surrogacy, has changed its legislation after a number of reports of abuses. By a vote of 21 to 9, the state legislature voted to restrict surrogacy to Mexicans and to exclude homosexuals and singles. Couples who engage a surrogate must now include a mother aged between 25 and 40 with documentation that she is unable to bear a child.

One deputy, Verónica Pérez Rojas, said that she voted to restrict surrogacy because it is a “new form of exploitation of women and trafficking”. He added that it treats children as commercial products and that it was a hotbed for exploitation and abuse of women. 




MORE ON THESE TOPICS | Mexico, surrogacy, surrogate motherhood

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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US clinics obliged to offer fertility services to transgenders


The peak body for assisted reproduction in the US has dispelled lingering doubts amongst its members and declared that providing reproductive services for transgender people is ethical. The Ethics Committee of the American Society for Reproductive Medicine has issued a formal opinion that there are no reasons to view transgender parenting unfavourably.

“Unless other factors disqualify transgender persons from fertility services, based on empirical evidence rather than stereotype or bias, we find no ethical basis to deny reproductive services to transgender individuals.”

The committee argues that it would actually be wrong to deny patients this right. “Professional autonomy, while a significant value in deciding whom to treat, is limited in this case by a greater ethical obligation, and in some jurisdictions, a legal duty, to regard all persons equally, regardless of their gender identity.”

It appears that some of the ASRM’s members have had misgivings in the past about the ability of transgenders to care for children. However the ASRM reassures them that they have nothing to worry about.

“The American Academy of Child and Adolescent Psychiatry affirms that ‘there is no evidence to support that parents who are ... transgender are per se deficient in parenting skills, child-centered concerns, and parent-child attachments compared with heterosexual parents’.” 




MORE ON THESE TOPICS | IVF, transgender

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The top tech ethical issues of 2016


What will the top ethical dilemmas of technology be in 2016? The John J. Reilly Center for Science, Technology, and Values at the University of Notre Dame has released its annual list to get people thinking before controversial science or technology goes mainstream.

Here are the ethical issues, listed in no particular order. Bioethical concerns are very prominent.

  • Talking Barbie -- a new Barbie that wants to record conversations she has with your child.
  • CRISPR/Cas9 -- technology for gene editing.
  • Rapid whole genome diagnosis -- a way to record and catalog the genomes of newborns in order to improve disease detection.
  • Digital labor rights -- a discussion of the tension between anonymous workers and anonymous bosses.
  • Head transplants -- a procedure that one doctor has promised to develop by 2017.
  • Disappearing drones -- drones that deliver payloads and then disappear into thin air without any indication of who sent it.
  • Artificial wombs -- the potential to grow a human fetus outside of a woman's body is creating concerns with women's rights advocates.
  • Bone conduction for marketing -- Verizon already has the technology to transmit ads to your brain through your bones, as well as your skin.
  • Lethal cyber weapons -- a potentially lethal computer program can cause a real explosion.
  • Exoskeletons for the elderly -- technology that helps people be more mobile and keep working but postpones retirement.



MORE ON THESE TOPICS | bioethics, bioethics discourse

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Interview: David S. Oderberg


David S. Oderberg is Professor of Philosophy at the University of Reading, UK, and has written extensively on bioethical issues such as abortion, euthanasia, genetic engineering, animal rights, and capital punishment from a natural law, anti-consequentialist viewpoint. He is also the editor of Ratio, an international journal of analytic philosophy. Xavier Symons, Deputy Editor of BioEdge, asked him to comment on the state of contemporary bioethics.

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Xavier Symons: In your opinion, what are the main philosophical concepts that bioethicists tend to misunderstand?

David S. Oderberg: There’s a lot of misunderstanding in the bioethics industry (because it is something of an industry), although I’d prefer to put it in terms of simple mistakes or confusions. I don’t think most bioethicists misunderstand what they believe or recommend at policy level, since most have a clear agenda, which is to pull apart as many “taboos”, i.e., commonsense traditional prohibitions, as possible.

A lot of the time, the ends justify the means inasmuch as bioethicists will use whatever argument they have to hand, whether good, bad, or indifferent, to advance a prior agenda. In that sense, I suppose you could say they misunderstand the function of argument, which is to get to the truth, not to advance a previously-adopted policy.

I recall reading, a number of years ago, a report by the UK’s Human Fertilisation and Embryo Authority, produced by a handful of bioethicists and devoted to defending human embryo experimentation. It was abundantly clear from the report that the authors (most of whom I had barely heard of as far as the philosophy profession is concerned) were intent on recommending embryo experimentation to the government as morally permissible, and they used whatever argument or “theory” they could to defend it.

As a result, you had a bit of Kantianism on one page, utilitarianism on another, virtue theory on another, and bits and pieces of philosophical thought, many of them totally irreconcilable with each other, thrown into the mix to achieve a supposedly rational conclusion that, sure enough, it was just A-OK to experiment on embryos, as long as we’re careful.

At a more conceptual level, I have seen a few significant confusions cropping up again and again. One is that between “killing” a patient’s condition and killing a patient, as though you could cure a person of their problem by getting rid of the person, e.g., end the pain by ending the patient. You can certainly do that, of course, just as you can eliminate a headache by cutting off someone’s head. But this should never be confused with curing someone, or caring for them, which are the primary duties of health professionals.

If bioethicists think they can “cure” someone of their suffering by euthanasia, then they are not really interested in cure (or care) at all, but in some other objective.

Which brings me to the confusion between what is good for a person and what is good for someone else, be it their family, the community, or society as a whole. Given that care and cure are the primary duties of medicine and health care generally, what is best for someone other than the patient can never be the primary objective of the health care professional as health care professional.

The idea that a patient could be a “burden” on society, their continued existence “distressing” to their family, their plight a “drain” on the health care system, can never trump the primary duty of care, which means looking after the patient and curing them where possible, or else making their situation as comfortable as possible. Unfortunately, under the malign influence of the bioethics industry, too many patients are now seen as commodities, units of production (I can’t find a better term) in the system, anything but individuals with a right to life, care, and dignity.

If I had to pick a last confusion among many, it would be the deliberate medicalisation of normal duties of care. The classic example is “artificial nutrition and hydration”, once called food and water. Now feeding people and giving them water, when they needed it, used to be a good old-fashioned human duty. But once bioethicists and their willing dupes in politics, economic, and the law, medicalise it - indeed, once it becomes the acronym ANH - then the common human duty is hidden behind jargon and they can coldly discuss “withdrawal of ANH”, as though it were a medical procedure rather than plain starvation.

The same sort of distancing practice is found in the use of terms such as “foetus”, “conceptus”, “termination”, “euthanasia”, “vegetative state”, and so on. History has plenty of precedents for this.

XS: How would you say the field of bioethics relates to the field of moral philosophy?

Oderberg: There is no bioethics without moral philosophy. Bioethics just is the application of moral philosophy, or ethics, to problems of life and death broadly construed. In that sense, there is no such thing as bioethics conceived as an autonomous discipline with its own experts working from a set of sui generis bioethical principles.

Yes, to be a bioethicist you need expertise in moral philosophy (something not shared by many bioethicists) and a command of the specific medical, scientific, and technological issues you are pronouncing upon. Preferably you should have up-close experience of those issues rather than mere ivory tower “experience”.

To be a bioethicist, then, you need to be a moral philosopher, and to be a moral philosopher you need to be a philosopher, able to distinguish good and bad arguments, and to separate reasoned thinking from fad, fashion, societal pressure, prejudice, and government policy.

And to be a philosopher, you need first to be a human being, with human concerns, love for your fellow man, care for society and its future, and that most uncommon resource - common sense. In other words, bioethics is not what you do when you can’t get a “real” philosophy job and like getting big grants from foundations and think tanks.

XS: What kind of novel contribution might a so-called “natural law approach” bring to the field of bioethics?

Oderberg: Well, natural law bioethics is not very well developed, despite its semi-advocacy in some circles. Being, say, pro-life doesn’t make you a natural law bioethicist. Nor does worrying about the sinister developments in biotechnology, or going on about the “culture of death”.

Being a natural law bioethicist means having a deep knowledge of, and respect for, a tradition of thinking that goes back to the ancient Greeks and Romans, that emphasises the role that nature has in guiding morality. Only ignorant sophists think that natural law ethics means believing that whatever is natural is good or right and whatever is unnatural is wrong or bad. Rather, it is about identifying what it is that fulfils our human nature, makes us be what we are supposed to be according to our natures as rational, embodied, but finite creatures.

I think we can be pretty sure that, as far as fulfilment of our nature is concerned, being killed generally doesn’t help. So attacks upon innocent life - innocent life, not the life of those who might forfeit their right due to the harm they have caused to others - are prohibited by natural law, whatever other considerations may apply.

I have yet to see a good argument to the effect that life itself is nothing but a means to the pursuit of other goods, and hence loses its value when one is, say, in a coma or persistent non-responsive state.

When it comes to topics such as genetic engineering, surrogate mothers, human “enhancement” or whatever issue bioethics and technology have managed to get before the media, what is needed is a careful, refined natural law analysis of the issue at hand. The guidance has to come from what is good for individual human natures and natural human groupings such as family, community, and state. But what is good for a group of humans depends wholly on what is most conducive to the fulfilment of each and every individual, which is why sacrificing some innocent people for the benefit of others is wrong. What is good for the group is not the same as the “best outcome” on a utilitarian or consequentialist weighing up of good and bad effects of some behaviour.

To this end, natural law theory cannot and must not work in a vacuum: it must be informed by authentic and credible empirical work on human nature and the common good, all of this balanced against common sense. To take one example, the self-mutilation that goes by the name “cosmetic surgery”, where the purpose is not to remedy a defect that inhibits the natural function of the human body (and perhaps also natural human functions such as friendship and social relations), is arguably morally wrong in all its forms.

Now, it’s not that there is something “unnatural” about it in a vague sense, but that its elevation of bodily perfection above the acceptance of inevitable imperfection given the kind of creature we are is itself an unnatural reversal of the proper hierarchy of human goods, placing a bodily good above what one might call a psychic good.

XS: A number of Catholic ethicists (Grisez, Finnis, George) have attempted to apply New Natural Law Theory to modern bioethical problems. Do you agree with the New Natural Law approach

Oderberg: Well, in general I do not agree with the approach, but I do agree with many of their ethical positions, albeit not all (and they don’t all hold the same ethical positions, either). The approach of “new natural law” emerged from the cultural revolution of the 1960s, when some Catholic philosophers, taking on many of the untraditional and contemporary views of the time (most of which persist), decided that good old-fashioned Aristotelian-Thomistic metaphysics just didn’t “cut it” any more.

We moderns, in other words, could see through the assumptions of Aristotle and Aquinas (and their followers) and their metaphysical “prejudices”, especially the view that there actually is such a thing as human nature, and that from human nature one could argue philosophically for a system of ethics. So a metaphysic of human nature, and everything that goes with it, was thrown out the window in favour of a focus on the subjective, first-person viewpoint, on the agent’s perspective on their reasoning about what to do and what is good or bad.

Now, somewhat miraculously, the NNL theorists managed to arrive, by this wholly new and hitherto unknown method, to a set of views that largely coincided with the ones they sought to uphold. Yet, as far as I can tell, the only times when they seem to have a view backed up by a penetrable and perhaps plausible argument are when they appear to be falling back on just the sort of “outdated” metaphysics they tend to disapprove of.

So, in my view, the NNL project as such is and always has been a failure, and is never, ever going to persuade liberal bioethicists to abandon a single one of their positions, whether on abortion, euthanasia, surrogate motherhood, “gay marriage”, or whatever. Now I’m not saying that the traditional, metaphysically-driven approach is, psychologically speaking, more likely to convince liberal bioethicists; but I do think it’s the only one that, intellectually speaking, has even a hope of doing so.

XS: Where do you see the field of bioethics heading in the next few decades?

Oderberg: Well, probably not heading in a wonderful new direction in which science and technology are put in their place and authentic human values are placed back in control, where society and government allow only those developments that genuinely benefit individuals and the common good. In fact, my views are pretty apocalyptic on that score, but I won’t go into it here.

What I will say is that the future of bioethics is tied to the future of society (or societies). Don’t expect bioethicists to lead the way in restoring sanity to an otherwise insane society. In fact, don’t expect philosophers to do so.

The cultural forces at work are what drive future developments, and whilst it’s true that bioethics has been very much in the vanguard, it is not the driver. We need to look at the wider society: where is it going? What will it be like in, say, thirty years? Answer that question and you will have answered the question as to what bioethics will look like.

I’m more than a little afraid, albeit more for my children than for myself. If everyone kept their children free from the brainwashing effects of the media and the biotech boosters (as the great Wesley Smith calls them), bioethics would end up looking very different indeed.

Professor Oderberg’s website is  www.davidsoderberg.co.uk.





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Should high school football be banned?


Bioethics is closing in on American football. An expert on concussion writing in the New York Times says that children should be allowed to play until they have reached the age of consent.

It is our moral duty as a society to protect the most vulnerable of us. The human brain becomes fully developed at about 18 to 25 years old. We should at least wait for our children to grow up, be provided with the information and education on the risk of play, and let them make their own decisions. No adult, not a parent or a coach, should be allowed to make this potentially life-altering decision for a child.

Dr Bennet Omalu, who first diagnosed  Chronic Traumatic Encephalopathy (CTE) in 2002 (and is the subject of the recent film Concussion), says that young players are at risk of  “major depression, memory loss, suicidal thought and actions, loss of intelligence as well as dementia later in life [and] drug and alcohol abuse as the child enters his 20s, 30s and 40s”.

In January the American Journal of Bioethics is to publish an even starker picture of the risks of football. Steven H. Miles and Shailendra Prasad argue in a pre-publlication blog post that public school tackle football programs should be banned because of the high prevalence of concussions.

The authors discuss two additional complications in addition to the possible harm that football can cause: consent and dual loyalty.

High school players are not capable of giving informed consent, they say. Existing consent forms do not quantity risk or minimize it. They do not take into consideration pressure from parents who hope that their son will become a professional athlete. And coaches and doctors are often caught between putting the players’ health first and maximising the interests of the “youth football industry”. They conclude:

… we believe that this is a time for “primordial prevention” that remediates “environmental, economic, social and behavioral conditions, cultural patterns of living known to increase the risk of disease.” For health care professionals, primordial prevention might commend ending support for football in public schools. By this option, health professionals would oppose public support for bonds to build stadiums or athletic facilities for junior or senior high school football. They would oppose public school programs granting academic credit for playing football or leave of absences for practice or games. Such a proposal would not ban youth football. Private play and private leagues, like the Pop Warner program, would continue. Young people choosing such programs would play purely for the game and not be lured by ‘school spirit.’ Health professionals would continue to promote life long exercise programs and school physical education programs. However, under this proposal, the medical community could help students, schools and society leave a sport on which the sun is setting.

This is a topic which will guaranteed to get a lot of publicity in January, with the publication of the AJOB, the release of Concussion (which has been tagged "the Christmas Movie the NFL Doesn't Want You to See", and the run-up to the Super Bowl.




MORE ON THESE TOPICS | concussion, football concussion, harm, sports

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Somerville vs Savulescu on gene editing


The debate over editing the human genome is bound to continue for a long time, now that the new CRISPR technology promises to make it quick and easy.

The Canadian Broadcasting Corporation brought together bioethicists Margaret Somerville, of McGill University in Montréal, and Julian Savulescu, of Oxford University, to debate the topic, which touches upon profound issues of human identity.

Somerville opposes altering the human genome and Savulescu supports it, provided it can be made safe. Their exchange of views is extremely interesting (read the transcript in full here). Below are their summing-up statements:

Margaret Somerville:  The analogy I’d make is to our physical environment. We have new technologies that we’ve used in our physical environment, and very recently, we’ve come to the awareness that it’s not indestructible and that we can do damage that is irreversible. And we’ve now recognized, as the conference in Paris this week is talking about, that we have to hold our physical ecosystem on trust for future generations, not to lay it waste, not to leave future generations worse off than we are – and hopefully better off.

And I think we can say the same about what I call our metaphysical ecosystem, the values, beliefs, attitudes, principles, stories that we tell each other and buy into to form a society, that we also have to hold on trust. I believe this idea, this area of actually designing future humans, and that’s what this about, contradicts what we need to maintain as the base of our metaphysical ecosystem – that is, respect for human life, in general, and respect for every individual human, and that includes human embryos.

Julian Savulescu: Nature does not deliver human beings who are necessarily healthy, does not deliver human beings who are necessarily social, does not deliver human beings who are necessarily happy. There is vast natural inequality. The most extreme examples are genetic diseases. Science now is beginning to allow us to understand why that occurs and how we can intervene. We ought to use that knowledge ethically and we ought to draw important distinctions. It’s not a question of gene editing, yes or no, it’s a question of what kinds, in what circumstances, and with what limits.

The important distinctions are between therapeutic and reproductive gene editing, between gene editing for treatment and for enhancement, and for gene editing to correct inequality versus to increase inequality. In my view, we need a mature ethics that enables us to use powerful science such as gene editing, but also artificial intelligence, the internet, nanotechnology. All powerful science has profound risks of abuse, and historically we have abused science. Today we need to develop an ethics that enables us to harvest the fruits of science while also preventing abuse.





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Most research using foetal tissue focuses on infectious diseases


Foetal tissue research has featured prominently in headlines this year, after an anti-abortion activist group filmed Planned Parenthood officials talking about sales of foetal parts to researchers. Their videos created a huge political controversy and, at a Colorado clinic, a gunman shot dead three people. Although he is not very coherent, he reportedly told police “no more baby parts”.

But less is known about what the scientists do with the tissue. A journalist for Nature, Meredith Wadman, combed through a National Institutes of Health database of research grants funded in 2014 to identify those which used foetal tissue. She found that the NIH had funded 164 of these projects, at a cost of US$76 million. This is only 0.27% of its grants.

Supporters of the research argue that the use of foetal tissue is legal, that it would otherwise be destroyed, and that it has helped to achieve significant medical advances. If they had other sources, they would use them, scientists said.

Here is what Nature found: 





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Call for Belgium to revise euthanasia legislation


Although legalised euthanasia is widely accepted amongst Belgian doctors and politicians and a pet cause of the media, many medicos still have misgivings. This week a group of psychiatrists, psychologists, philosophers and others published a letter in De Morgen, a Flemish newspaper, asking the government to remove the option for euthanasia on the basis of psychological suffering alone. 

This is probably the first time that a professional group has pushed back against the ever-widening circle of eligibility for euthanasia. The trigger for the letter was two vivid documentaries in the English-speaking media. The first, which appeared on the Australian SBS network, showed a doctor euthanizing an elderly woman without seeking a consultation with a psychiatrist, as he is supposed to do under current legislation. For the first time in the history of the legislation, the euthanasia commission decided to press charges. The second documentary was a video produced by The Economist about a 24-year-old woman suffering from severe depression who applied for euthanasia.

Here are some excerpts from the dissidents’ letter (translation here):

Mental suffering is real and can be at least as severe as physical suffering.

What is unique, however, is that you can only rely on the word of the person who is suffering to evaluate it. And this is clearly a good thing, because he or she is the only one who knows how much it hurts at that precise moment. At that moment indeed … because when we suffer psychologically, we are often convinced that no other future is possible.

It is often precisely these thoughts that push a person into the abyss, since as long as there is perspective, one can usually tolerate a great deal. We see that some people who were first declared terminally ill eventually abandon euthanasia because new prospects appear. In a paradoxical way, this proves that the disease cannot be called incurable …

Some also defend the thesis that the mere offering of death as an option can cause a positive change and can therefore also be considered a component of good care.

In our view, however, this inevitably entails the radical failure of the mental health sector. The use of “death as therapy”, possibly up to the point of actually even performing the requested euthanasia, implies a priori renouncing what therapy still can and should be offering: the inexhaustible opening up of new perspectives.

As representatives of the various directly-involved professional groups, from different parts of the country and from across the different ideological fault lines, we are alarmed by the increasing trivialisation of euthanasia on the grounds of mental suffering alone.

We believe that this situation is intrinsically linked to the concept of an act which is based on subjective criteria. That is why we insist that allowing euthanasia based on purely psychological suffering should be removed from the current legislation.

Supporters of euthanasia, of course, responded with their own letter, also signed by dozens of doctors and ethicists, including the chairman of euthanasia evaluation commission, Wim Distelmans. They described their colleagues’ letter as “well intentioned but nonetheless misguided” because it was paternalistic and demonstrated a profound lack of empathy. “The suffering of some patients is so unfathomably deep, that granting their request for assisted medical and painless death, from a certain moment, the best thing the health sector has to offer,” they write. 




MORE ON THESE TOPICS | Belgium, euthanasia

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The socialite and her dialysis machine


Is “life is no fun any more” sufficient and rational reason to refuse life-saving medical treatment? A British judge in the Court of Protection decided that it was in the case of “C”, a woman dying of kidney failure.

The woman behind the judgement in Kings College Hospital NHS Foundation Trust v C & Anor is – or was (she may be dead by now)– an extraordinary character. Here is Justice MacDonald’s summation of her life

C is a person to whom the epithet 'conventional' will never be applied. By her own account, the account of her eldest daughters and the account of her father, C has led a life characterised by impulsive and self-centred decision making without guilt or regret. C has had four marriages and a number of affairs and has, it is said, spent the money of her husbands and lovers recklessly before moving on when things got difficult or the money ran out. She has, by their account, been an entirely reluctant and at times completely indifferent mother to her three caring daughters. Her consumption of alcohol has been excessive and, at times, out of control. C is, as all who know her and C herself appears to agree, a person who seeks to live life entirely, and unapologetically on her own terms; that life revolving largely around her looks, men, material possessions and 'living the high life'. In particular, it is clear that during her life C has placed a significant premium on youth and beauty and on living a life that, in C's words, 'sparkles'.

With respect to youth and beauty, her daughter V states that just as C has never seen herself as a mother, she has never seen herself getting old. Upon being diagnosed with breast cancer in December 2014 when aged forty-nine V relates that C expressed the view that she was "actually kind of glad because the timing was right". It is recorded in C's medical notes that she did not want to discuss the benefits and risks associated with chemotherapy but was "keen not to have any change in size or deficit that will affect her wearing a bikini". She refused to take medication prescribed for the disease because "it made her fat". 

C’s socialite life fell apart within a few months. In December last year she was diagnosed with breast cancer, she had treatment, her latest relationship failed, she lost her home, she was buried under debt, and she was arrested and faced criminal charges over an apparently minor matter.  

So on September 7, C went to the beach and washed down 60 paracetamol tablets with a bottle of Veuve Clicquot. But (to use her own words) she "royally cocked it up" and ended up in King's College Hospital instead of the morgue, suffering from a damaged liver and kidney failure.

Her doctors were cautiously optimistic about her prognosis, but she would have to be on a dialysis machine for many months. C, however, wanted to refuse all treatment, fully aware that she would die without it. The hospital applied to the court for authorisation to restrain C to allow her to be treated; her family supported her decision. Two psychiatrists believed that C could not be of sound mind because she refused to believe that she would recover. Her pessimism about the future was irrational.

So the question before the court was essentially whether her apparently frivolous reasons for wanting her life to end were rational and “capacitous”.

Having heard the evidence, the judge decided in favour of C and ordered the hospital to respect her wishes. To him, her decision seemed unwise; to others it might seem “unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general”. But her decision to effectively commit suicide was a rational within her own ethical universe:

“C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.” 





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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Summit fails to ban genetic engineering of human embryos


Gene-editing with the four-year-old CRISPR technique is already so promising that a meeting of American, British and Chinese scientists was held in Washington this week to discuss how it should be regulated.

The most controversial item on the agenda was genetic editing of human embryos and germ cells. Chinese scientists have already done this with surplus IVF embryos, although all of them died. Unsurprisingly, the International Summit on Human Gene-Editing declared that it would be “irresponsible to proceed with any clinical use of germline editing” until the risks were better understood. But it failed to endorse even a moratorium on human germline gene-editing, let alone a blanket ban.

Gene-editing has far-reaching uses in basic and pre-clinical research and modification of somatic cells. If embryos or germ cells are edited, it might be possible to avoid severe inherited diseases or to enhance human capabilities.

The summit pointed out that there are many risks, including :

(i) the risks of inaccurate editing (such as off-target mutations) and incomplete editing of the cells of early-stage embryos (mosaicism);

(ii) the difficulty of predicting harmful effects that genetic changes may have under the wide range of circumstances experienced by the human population, including interactions with other genetic variants and with the environment; 

(iii) the obligation to consider implications for both the individual and the future generations who will carry the genetic alterations; 

(iv) the fact that, once introduced into the human population, genetic alterations would be difficult to remove and would not remain within any single community or country;

(v) the possibility that permanent genetic ‘enhancements’ to subsets of the population could exacerbate social inequities or be used coercively; and

(vi) the moral and ethical considerations in purposefully altering human evolution using this technology.

While recognising the ethical complications, the scientists were reluctant to close the Pandora’s box. “We don't want to slam the door on this idea forever,” said biochemist Jennifer Doudna of the University of California, Berkeley, one of the scientists who developed the technique. And Harvard’s George Church argued that a ban would be unrealistic because it cannot be enforced. Research will continue in countries where it is not banned.

The need for ethical and regulatory clarity is urgent. The Chinese experiment failed because the editing was sometimes inaccurate. However, a paper published in Science during the week of the conference was a major advance. As Wired commented: “It’s the latest in a series of improvements to the Crispr system that, together, are inching the error rate down toward practically zero.” 




MORE ON THESE TOPICS | CRISPR, genetic engineering

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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Debate begins over ethics of genetic editing


At the heart of the debate over the use of CRISPR technology for gene-editing is the human embryo. While manipulation of the genomes of plants and animals also raises profound ethical issues, it is the possibility of altering the human genome which generates summits and white papers.

So this week, there was a flurry of activity about the ethics of human genetic engineering.

At the International Summit on Human Gene-Editing in Washington DC this week, convoked by the US science and medicine academies, the UK Royal Society and the Chinese Academy of Sciences, it was apparent that little had changed since 12-round fight over the use of human embryonic stem cells a decade ago. Even the characters had not changed much; some, like George Q. Daley, of Harvard, and Robin Lovell-Badge, from the UK, were leading defenders of human embryonic stem cell research.

The summit concluded that “It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved … and (ii) there is broad societal consensus about the appropriateness of the proposed application.”

No one was willing to treat destruction of embryos as a step too far.

However, there were varying degrees of caution.

As an example of the permissive side, there is Chris Gyngell, Tom Douglas and Julian Savulescu who wrote from Oxford University in the UK. They saw no reason why embryos should not be engineered for research, although they acknowledged that editing for reproduction was not politically feasible at the moment:

In cloning, a distinction between reproductive applications and research enabled clearly beneficial research to proceed while controversial applications were set aside. We propose that the parallel distinction should be drawn, and emphasised, in discussions of GE [genetic engineering]: we should distinguish between the gene editing of embryos for research purposes, and for reproductive purposes. While there is widespread agreement that GE should not be used for reproductive purposes, its use in research should be encouraged.

But they believe that the time is not far off when it could be used for reproduction to avoid serious genetic diseases:

In the future there may be good reasons for us to consider using GE for reproductive proposes. Most immediately, GE could be used to correct mutations which cause simple genetic diseases, such as cystic fibrosis, muscular dystrophy and Tay-Sachs disease.

Representing the restrictive side are the Center for Genetics and Society and the Friends of the Earth, who called for national and international prohibitions on the use of gene editing and synthetic biology to alter human embryos or gametes for reproductive purposes. They also published a long and thoughtful report which places human gene editing into the context of broader developments in synthetic biology. It examines the systemic and commercial incentives to rush newly discovered biotechnologies to market, regardless of their social utility and ahead of appropriate, transparent assessment and oversight.

“Genetic modification of children was recently the stuff of science fiction,” said lead author Pete Shanks, consulting researcher with the Center for Genetics and Society and author of Human Genetic Engineering: A Guide for Activists, Skeptics, and the Very Perplexed. “But now, with new technology, the fantasy could become reality. Once the process begins, there will be no going back. This is a line we must not cross.”

The CGS also organised an open letter signed by scores of scholars, scientists, health practitioners, and public interest advocates. They said:

Experiments with human germline intervention could lead to miscarriage, maternal injury, and stillbirth. Genetically modified children who seem healthy at birth could develop serious problems later in life, some perhaps introduced by purported enhancements. Other harmful consequences of germline modification might only present themselves in subsequent generations. Such outcomes would represent individual tragedies; they could also trigger social backlash against beneficial uses of genetic technologies…

In sum, there is no justification for, and many arguments against, human germline modification for reproductive purposes. We call for a prohibition on such germline modification and a robust and broadly inclusive discussion on the socially responsible uses of this and other emerging genetic technologies.




MORE ON THESE TOPICS | CRISPR, genetic editing, genetic engineering

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 could clone humans


The Boyalife cloning factory in Tianjin   

Cloning has been off the radar for several years. But, according to a report from Agence France-Presse, it’s back on the boil in China.

AFP interviewed scientists from the Boyalife Group in the northern city of Tianjin, which is building a huge plant for cloning livestock. The researchers believe that they will be producing one million cloned cows a year by 2020.

Other Chinese scientists are sceptical, as securing approval from regulators is a long process and the factory has not even been completed.

Boyalife also has plans for dogs, thoroughbred horses and monkeys. And after the technology for cloning them is mastered, humans could be next. The AFP report says:

The firm does not currently engage in human cloning activities, [Chief executive Xu Xiaochun] said, adding that it has to be "self-restrained" because of possible adverse reaction.

But social values can change, he pointed out, citing changing views of homosexuality and suggesting that in time humans could have more choices about their own reproduction.

"Unfortunately, currently, the only way to have a child is to have it be half its mum, half its dad," he said.

"Maybe in the future you have three choices instead of one," he went on. "You either have fifty-fifty, or you have a choice of having the genetics 100 percent from Daddy or 100 percent from Mummy. This is only a choice."

Boyalife has a South Korean partner, Sooam Biotech Research Foundation, a company headed by Hwang Woo Suk, the disgraced stem cell scientist who published fraudulent research in Science in 2004 and 2005. His group is trying to bring back an extinct woolly mammoth using DNA found in frozen carcasses in Siberia and also cloning dead pet dogs for a reported price of US$100,000.

Dr Xu reassured the AFP journalist: "We want the public to see that cloning is really not that crazy, that scientists aren’t weird, dressed in lab coats, hiding behind a sealed door doing weird experiments." 




MORE ON THESE TOPICS | China, cloning, Hwang Woo-suk

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US surrogates with triplets pressured to abort


Melissa Cook   

Two surrogate mothers who are pregnant with triplets are being pressured by the prospective fathers to abort one of the babies.

California woman Melissa Cook, 47, told her story to the New York Post. She claims that the father, from Georgia hired her for US$33,000 to have a child using his sperm and the eggs of a 20-year-old donor. The IVF doctor implanted three embryos in the hope that one would survive. But all three did.

Ms Cook realised that she would have triplets at 8 or 9 weeks. After 20 weeks, it is nearly impossible to get an abortion in California, so the father is doing everything he can to force the issue. She gave the Post a letter from the man’s lawyer who said that his client  “understands, albeit does not agree, with your decision not to reduce”. He went on to write:

“As you know, his remedies where you refuse to abide by the terms of the agreement, are immense [and] include, but are not limited to, loss of all benefits under the agreement, damages in relation to future care of the children [and] medical costs associated with any extraordinary care the children may need.”

Ms Cook said that she was not sure that she could resist the pressure. “I have to reduce. I’m scared. I don’t want to suffer,” she said.

Another California woman approached Jennifer Lahl, an anti-surrogacy activist, with a similar story.

The story broke as the Governor Cuomo and the New York legislature consider removing a ban on commercial surrogacy. “Legalizing surrogacy contracts is a top legislative priority of the Empire State Pride Agenda, the leading gay-rights advocacy group,” the Post says. “Following passage of the same-sex marriage law in 2011, interest in having children via surrogacy has become a priority for some gay couples.”




MORE ON THESE TOPICS | fetal reduction, surrogacy, surrogacy law

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IVF booming in China


China’s decision to abolish the one-child policy made many couples happy – and many IVF clinics. Business is booming, as many couples are eager to ensure that they have a boy. Chinese women marry at around 28, so many will have trouble conceiving a second child if they wait until they are 35 or so.

"Here we can do IVF with gender selection and you don't need lots of documentation," a doctor at a Guangdong clinic told Reuters. He said that there had been a 50% rise in consultations since the announcement.

"Clinics are so busy it's unbearable. Whichever hospital you go to it's always rammed with people," said a doctor at an IVF clinic in Shanghai.

"China is set to be the biggest IVF market in the world, probably within the next couple of years," an American involved in reproductive health says. Overseas groups like Australia-based Monash IVF and Virtus Health are expanding into China.

Overseas IVF is also less restrictive. In China surrogacy and gender selection are officially not permitted, but they can be organised at IVF clinics in the US, Thailand, Vietnam and Australia.




MORE ON THESE TOPICS | China, IVF

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Surrogacy in Mexico


Another documentary about the dark side of surrogacy, this time in Mexico. Channel 4 journalist Kiki King interviews surrogate mothers and American surrogacy agencies. It’s not a rosy picture of loving surrogates and gushing parents. One of the surrogates even claimed that her agency did not give her enough to eat. Another found out after she became pregnant that her client and sperm donor was HIV positive. Another became pregnant without a contract. (For the full video, watch it on YouTube.)




MORE ON THESE TOPICS | Mexico, surrogacy, surrogate motherhood

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Doin’ what comes natur’lly


A new medical technology encounters the most resistance when Joe Bloggs thinks it is “unnatural”. If you nailed a placard to a door with the words “plague within”, politicians could not run away fast enough. So the approval of challenging new technologies often depends on reframing the debate either to make them appear natural or to whisk the word away.

After decades of experience with debates about the “naturalness” of IVF, mitochondrial donation, homosexuality, hybrid embryos, GM foods, animal experimentation, cloning, surrogacy, gamete donation and so on, the UK’s Nuffield Council on Bioethics has taken the bull by the horns and written a position paper on “naturalness”. (Summary here. Full report here.) The council is independent but has a history of influencing bioethics policy in the UK. 

Since the philosophical debate over naturalness is at least 2,400 years old, a committee of British panjandrums is unlikely to come up with new ideas, but it could give the government an arsenal of arguments to justify controversial policies.

The idea of naturalness is never far from the centre of bioethical discourse. “How dare you refer to my beautiful children as ‘synthetic’?” tweeted Elton John in March 2015 in an argument with Dolce and Gabbana. Bishop Keenan of Paisley argued that a technique to prevent mitochondrial DNA disorders “distorts the natural process of fertility” when it was being debated in Parliament in February.

As the Council’s report points out, the word is susceptible to many interpretations and often people talk at cross purposes.

The report sets out five understandings of naturalness that show the different ways in which the terms “natural” and “unnatural” are used:

Neutral: a neutral/sceptical view that does not equate naturalness with goodness.

Wisdom of nature: the idea that nature has found the correct or best ways of doing things and should not be “tampered” with.

Natural purpose: the idea that living things have natural purpose, essence or functions which is linked to what is good for them and which science shouldn’t seek to change.

Disgust and monstrosity: a response of disgust, revulsion or fear prompted by novel technologies.

God and religion: the idea that certain technologies distort God’s creation or go against the will of God.

“It is too simplistic to suggest that natural things are good and unnatural things are bad, yet we see many examples of this being implied through the media, in advertising and on the packaging of many products we buy. Our findings show that people use the terms nature, natural and unnatural to express a range of values, beliefs, hopes and fears," said Roland Jackson, the chair of the naturalness project.

Amongst the recommendations made by the committee is some finger-wagging at journalists, politicians, policy-makers, manufacturers and advertisers to mind their language.

Tom Shakespeare, member of the Council’s Steering Group, said: “The use of these words by journalists, politicians and others to convey a good or bad view of science is lazy and clichéd. People often have genuine concerns, beliefs and values which should be answered, not just dismissed. Everyone involved in key debates about science should avoid using these terms, unless they are willing to explore and engage with the hopes and fears that lie behind them”.

Although the report concludes that more precision in the use of the word “natural” will help people communicate more effectively, it’s hard to escape the feeling that the British government has something up its sleeve. After all, it is not in the business of lexicography.

While the report is cautiously phrased, it prepares the ground for an official government stand that the word “natural” is so ambiguous and confusing that it is meaningless and should therefore be ridiculed and discarded. It’s hard to imagine what cannot be approved in the new bio-technologies if this happens.





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 the antibiotic apocalypse nigh?


In practice contemporary bioethics assumes a constantly increasing standard of medicine. The challenge is to ensure that healthcare resources are distributed equitably.

But that could change with an “antibiotic apocalypse”. If bacteria develop a resistance to antibiotics, common infections and diseases would once again become killers and surgery and cancer therapies would be far less effective. Medicine would be set back a hundred years.

Unfortunately, that day may not be too far away. This week Chinese scientists announced that they had found a new mutation, the MCR-1 gene, which makes bacteria resistant to colostin, the antibiotic of last resort. A report in the journal Lancet Infectious Diseases found colostin-resistant bacteria in a fifth of animals tested, 15% of raw meat samples and in 16 patients.

Prof Timothy Walsh, of the University of Cardiff, told BBC News:

"All the key players are now in place to make the post-antibiotic world a reality. If MCR-1 becomes global, which is a case of when not if, and the gene aligns itself with other antibiotic resistance genes, which is inevitable, then we will have very likely reached the start of the post-antibiotic era. At that point if a patient is seriously ill, say with E. coli, then there is virtually nothing you can do."

A commentary in The Lancet concluded that unless something significant changes, doctors would "face increasing numbers of patients for whom we will need to say, 'Sorry, there is nothing I can do to cure your infection.'"

Complacency is part of the problem, because doctors and veterinarians around the world prescribe antibiotics so freely that bacteria are developing resistance rapidly. And no new class of antibiotics has been developed since 1987.

However, the media and the public is finally becoming more aware of the issue. Earlier this month microbiologists celebrated the first World Antibiotic Awareness Week. Its spokeswoman, Professor Laura JV Piddock, of the University of Birmingham, stressed the impact of poorer health on other aspects of society.

"Every time we can't treat an infection, a patient spends longer in hospital and there is the economic impact of not being in education or work. The consequences are absolutely massive, that's actually something people have not quite grasped."




MORE ON THESE TOPICS | antibiotics, public health

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The underground Dutch system for do-it-yourself euthanasia


The leading Dutch right-to-die society is seeking talks with the Dutch medical association (KNMG) for approval of a “peaceful pill” which will allow its members to kill themselves without the help of a doctor.

As usually happens in the progress of euthanasia, supporters are now telling the media that this already occurs illegally on a vast scale and that legislation is essential to guard against abuses.

People who believe that their lives are “complete”, need a pill, says the Dutch Association for a Voluntary End of Life (NVVE) in a recently-published policy paper. The details have yet to be worked out with the Ministry of Health and the Ministry of Security and Justice and the KNMG. As the NVVE acknowledges, the peaceful pill could be used to murder people, or taken impulsively by otherwise healthy people, or used by young people with mental health issues. Therefore the NVVE would like to run a pilot project so that authorities will have “scientific research” to back up a decision.

NVVE director Robert Schurink told the media: “We see that society wants such a pill, particularly among the babyboomer generation which is not afraid to speak its mind. They want control over the end of their lives.”  

For the first time, NVVE and another group, Stiftung De Einder, have acknowledged that they are already promoting a “peaceful pill” outside the existing legal framework. The lethal drugs are ordered from overseas. From China come pills and from Mexico come liquid barbiturates. The packages arrive quickly, sometimes disguised as a birthday card. NRC says that although this arrangement is illegal, there is no chance that the public prosecutor will charge anyone.

About 5300 people are euthanased legally in the Netherlands every year. The NVVE did not disclose how many commit suicide using overseas drugs over and above this figure. De Einder told NRC that it had given advice about its own service to 607 clients last year, although it is unclear how many committed suicide.

One of NVVE’s clients is 75-year-old Jannes Mulder, a doctor who had helped to euthanase several people himself. A feature story in the NRC describes how he contacted China:

Mulder ordered through the mail powder for two people – himself and his wife. Payment was made through Western Union: US$400. Two weeks later came a brown envelope with red Chinese postmarks. There was a birthday card for “John”: happy birthday. It is a subterfuge that Chinese suppliers often use. Inside the card was a sachet of powder. Mulder put it in the basement. Those around him know about it -- Jannes H. Mulder is in charge of his own life. He will soon test some of the powder on his goldfish. "I want to make sure it works," he says.

NRC also tells the story of another client, 83-year-old Tom van Manen, who stirred the Chinese powder into his breakfast yoghurt one  morning in 2012 with the help of his daughter, Kika Notten. It sounds like a typical “completed life” scenario – except that van Manen was quite demented and may not have understood what he was doing. Ms Notten knew that she was in a grey zone, legally speaking. However, she was careful to inform a local doctor and two police officers. They did nothing.




MORE ON THESE TOPICS | assisted suicide, euthanasia, Netherlands

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Nitschke tells medical board to go to blazes


It took only a month for Australia’s leading right-to-die activist to tire of life without being able to teach people how to kill themselves. Philip Nitschke, who retained his medical registration last month only by agreeing not to promote suicide, has reneged.

In a dramatic press conference, he burned his medical practising certificate and announced that he would aggressively promote rational suicide. He said in a press statement:

30 years ago I left the Territory to study medicine in Sydney, 5 years later I returned and began my medical career here in this city, in Darwin Hospital. Today, and with considerable sadness, I announce the end of that 25 year medical career. I confirm this decision by burning my medical practicing certificate…..

However, he also asserted his right to use the title “doctor”, which medical authorities are likely to contest. He said defiantly:

I will remain a “Doctor” and will legitimately use that title, and I will continue see patients/ Exit members in my euthanasia clinics that I run in Australia, in Darwin and Adelaide, and in other countries. Indeed while in Darwin this visit I will be seeing two terminal patients who have sought my advice.

Once again, he insisted that suicide is a fundamental right:

The right of an adult to a peaceful death is a fundamental right. This right is not dependent on degrees of sickness, or medical expertise, or any permission or authority that that the medical profession can give. As such, I reject the authority and role of the Medical Board in the furthering and development of end of life choice in this country.

Here are his plans in the wake of his decision:

I will continue to provide advice and information to patients and appropriate members of the public who seek it, on the use of the premier end of life drug Nembutal.

I will continue to distribute and update my Peaceful Pill Handbook, produce teaching videos and continue to run the Exit on-line end of life forum as the law permits.

I will continue to run Exit End of Life Workshops in all Australia and other countries. Workshops will run in all Australian cities over the next three weeks, beginning in Darwin this afternoon. This workshop series will be billed – “Workshops where you receive the end of life information doctors can not provide”.

I will continue to provide appropriate and accurate information on suicide to patients and members of the public who request it. In particular detailed information on the lawful use of Nitrogen and other inert gases to achieve a peaceful reliable death will continue.

I will continue to develop and market test kits to enable patients and members of the public to test the purity of Nembutal they acquire. Making available reliable Nembutal test kits is consistent with the principal of harm minimisation.

I will not remove my name from the Peaceful Pill Handbook which I co-authored with Dr Fiona Stewart. This book is now the world’s most popular guide that advises on end of life methods, and serves the growing demand by the elderly for information on the means to control the manner and timing of one’s death.

The December update of the Handbook is due for release next week and contains new information on a number of new overseas sites where one can lawfully purchase Nembutal.





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 doctor sues husband over pressure to abort twin daughters


A woman doctor in India has sued her husband and a hospital for pressuring her to abort twin girls. In a first-of-its-kind case, Mitu Khurana, a 39-year old doctor from Delhi, claims that her husband, Dr Kamal Khuran, secretly obtained an ultrasound of her daughters when she was pregnant with the collusion of the hospital. He then insisted that she should abort them, sometimes violently.

“If, despite all the evidence I have, the accused are allowed to escape then no other women will ever try to prosecute for this type of crime,” Mita Khurana told The Sunday Telegraph. “Ultrasounds in India always happen behind closed doors because every doctor knows it’s a crime and will never give the results in writing. If I lose this case it will close the door to any women who want to file complaints in the future”.

According to the Telegraph:

Her husband, Dr Kamal Khurana, has vehemently denied the allegations which are the first of their kind to be brought under a law that prohibits the gender testing of foetuses which was introduced in 1994 to curb the endemic practice of aborting girls.

Despite the pressure Mita Khurana did give birth to twin girls. They are now 10 years old. The case has been dismissed in a lower court for lack of evidence.

The United Nations has described the dwindling number of Indian girls as an “emergency” which is contributing to violent sex crimes against women. A Dehli group recently investigated 89 hospitals in the city and found enormous gender discrepancies in birth rates. One clinic had delivered only 285 girls for every 1,000 boys in the past year.




MORE ON THESE TOPICS | gendercide, India, sex-selective abortion

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Should British surrogates be paid?


Sydney Morning Herald /Simon Bosch    

There appears to be significant support for an overhaul of UK surrogacy laws. Earlier this week the UK Working Group on Surrogacy Law Reform published a report with various recommendations. Interestingly, these did not include a US style commercial model of surrogacy. According to a press release published with the report,

“The existing [legislative] model is not perfect, but it does provide a workable basis from which improvements can be made, and there are aspects of the existing law which should be retained. The retention of altruistic surrogacy in the UK is also aligned with public policy governing other areas of assisted reproduction in the UK, including gamete donation.”

In an article in the Guardian this week, a woman who used a surrogate mother to have her twins four years ago spoke of the importance of keeping surrogacy altruistic. “We must avoid reforms that would embed a commercial approach: contracts, transactions, profiteering”, said Natalie Smith, 34. The surrogate who bore Smith’s babies, Jenny French, 28, agrees: “Surrogacy is about friendship,” she said. French is also expressed concerns about where the money would go if surrogacy were commercialised: “It won’t be the surrogates who get the money, it will be the lawyers and the agents”.

UK fertility law expert Natalie Gamble believes that the law should be changed, and that the UK should adopt a Californian commercial surrogacy model.  According to Gamble this would create a more “structured” and “transparent” surrogacy system. 




MORE ON THESE TOPICS | surrogacy, surrogacy law, UK

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Run that past me again: forced-feeding is not OK in Guantanamo, but is OK in nursing homes?


A US medical academic has made a scathing attack on the practice of force feeding elderly patients. Writing in the New York Times, Dr. Haider Javed Warraich of Duke University Medical Center compared the practice to the force feeding of patients in Guantanamo Bay:

“The practice of forced feeding has been highlighted by its use on hunger strikers in Guantánamo Bay… But you don’t have to be in prison to have a feeding tube jammed up your nose. Millions of elderly Americans are fed through tubes despite a lack of substantial evidence pointing to any clinical benefit.”

According to Haider, tube feeding is often administered as a result of family who refuse to accept that a disease has progressed beyond the possibility of remedy. But doctors are often just as much to blame, he writes.

“Doctors are known to be an overly optimistic bunch, and a survey revealed that almost two-thirds of them erroneously believed feeding tubes would improve survival in their patients. In fact, given that tube feeding has now been shown to be harmful in patients with dementia, it should not even be offered to this population. “

Warraich believes there needs to be a seismic shift in attitudes toward this procedure, and all interested parties need to co-operate:

“Financial incentives that may be driving overuse need to be discarded. Patients who are expected to live at least a few days should be fed by hand, but families must accept that in some cases, the inability to eat is itself often a sign that the disease has progressed to its final stage. For those patients who can’t be hand fed and who don’t want to be fed, inserting a tube only compounds their agony.”

The article comes in the wake of a widely publicised court case invovling an elderly Canadian woman who was fed by her doctors despite having written an advance directive asking for this not to happen. Importantly, this was not a case of force feeding, though some argued it was comparible to the practice. The woman's family wanted nutrition and hydration to cease so that she would die a quick death. The plaintiff’s lawyer argued that the continued feeding was a kind of “battery”. 




MORE ON THESE TOPICS | force-feeding, Guantanamo Bay, nursing homes

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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Victoria’s sperm donor anonymity overhaul


The government of the Australian state of Victoria may overhaul sperm donor anonymity rules, to give all donor conceived children access to information about their fathers.

Under proposed legislation, the identity of men who donated sperm anonymously in the 1970s and 80s will be made available to their offspring. At present, access depends on when a child was born, with those conceived before 1988 having no right to identifying information, unlike those conceived in subsequent years. The government's reforms will mean that details will now be provided to all donor-conceived children regardless of when they were born – and more importantly, regardless of whether their donor agrees.

Victorian health minister Jill Hennessy has described the current legislation as promoting  inequality "based simply on arbitrary time frames".

"Whether it's to know more about their heritage, to learn their medical history, or so that they can try to connect with the generous individuals who donated to give them life, all donor-conceived Victorians should have the same rights to access information about where they came from," Ms Hennessy told The Age earlier this year.

But many sperm donors are angry that the promise of anonymity has now been rendered retrospectively invalid. Ian Morrison said his decision to donate in the mid-1970s would come as no surprise to his relatives and immediate family, but it was nonetheless unfair for the government to change the law.

"Regardless of what they consider it to be these days, I signed a contract back in the mid to late '70s which essentially said I've got anonymity. Now to have somebody come back, in my case, 40 years later and say: 'well that contract doesn't stand anymore and we're going to change it' is something that I find staggering," he told The Age.

It is unclear whether the legislation will be passed in both houses of the Victorian parliament. The Labour government does not have a majority in the upper house, and will need to secure support from the Coalition, or an extra seven votes from the Greens and the crossbench.




MORE ON THESE TOPICS | sperm donation, Victoria

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Concerns over proposed changes to consent in US research


Concerns have been raised about proposed revision of  US Department of Health and Human Services (HHS) human research ethics regulations. The HHS is suggesting changes regarding the regulation of the use of biospecimens for research, the supervision of multicentre studies, and the need for ethics oversight for trials not involving invasive interventions.

Specifically, the HHS would require scientists to obtain explicit consent from patients before using their blood or tissue for research. The new protocol is designed to prevent issues like the case of Henrietta Lacks, a black woman whose tissue was used without permission in cancer research for decades.  

But a number of specialists are concerned that the new rules would add unnecessary red tape to research.

"It's now going to be much more onerous to get this tissue that otherwise would just go in the trash," says Dr. Luis Garza, a Johns Hopkins University dermatologist who uses foreskin from circumcisions for a variety of experiments. "It's creating barriers for working on human tissue, which is what we need to do to solve human disease."

Other researchers are worried about changes to regulation of multi-site studies by institutional review boards. Under the proposed rules, one centralized institutional review board could run an entire multicenter study, rather than IRBs at each location participating in oversight.

Some advocates and bioethicists worry that streamlining study reviews would undermine protections for volunteers, especially studies involving many sites. Dr Michael Carome, who heads Public Citizen's Health Research Group, a Washington, DC-based advocacy group, says that it is unlikely one IRB can "adequately understand the local context, local ethical issues, the quality of the facilities and the credentials of the practitioners.”

Certain exemptions have also been proposed for studies that do not pose physical risks, such as projects that only involve asking subjects questions and answers in surveys and in-depth interviews.

But this change is raising fears, too. Those kinds of studies "are not physically invasive, but they may be intrusive," Ruth Macklin, a bioethicist at the Albert Einstein College of Medicine in New York, told NPR. "There are forms of harm that are not just physical harm."

Probing people about sensitive subjects, such as whether they've had an abortion or have been physically or sexually abused as children, can trigger strong emotional reactions, potentially causing psychological distress, Macklin says.




MORE ON THESE TOPICS | informed consent

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CRISPR-mania in China


The new CRISPR as a technology only really came into the public spotlight last year. But already dozens, if not hundreds, of Chinese research hubs are using the technique on a range of animals.

CRISPR research is being supported in China via grants from the National Natural Science Foundation of China, Ministry of Agriculture, Ministry of Science and Technology as well as provincial governments.

In the past year alone, numerous articles have been published in leading journals documenting the use of CRISPR by Chinese scientists to create genetically enhanced goats, sheep, pigs, monkeys and dogs, among other mammals. In a September edition of Nature’s Scientific Reports, for example, geneticists Xiaolong Wang and Yulin Chen from Northwest A&F University published the results of study into enhancing goat muscle and hair growth. In early-stage goat embryos the researchers had successfully deleted two genes which suppress both hair and muscle growth. The result was 10 kids exhibiting both larger muscles and longer fur. So far,  no other abnormalities have appeared. 

And the Chinese genomics BGI recently announced that their institute will be selling ‘micropigs’ as pets. The institute originally created the micropigs as models for human disease, by applying a gene-editing technique to a small breed of pig known as Bama

“[CRISPR research] is a priority area for the Chinese Academy of Sciences,” Minhua Hu, a geneticist at the Guangzhou General Pharmaceutical Research Institute, told the Scientific AmericanA colleague, Liangxue Lai of the Guangzhou Institutes of Biomedicine and Health, added that “China’s government has allocated a lot of financial support in genetically modified animals in both [the] agriculture field [and the] biomedicine field.”

Not everyone in the country is sold on the new technology, said Yaofeng Zhao of China’s State Key Laboratory of Agrobiotechnology. In an interview with Nature he said:

“I think there are different viewpoints on gene modification. Even in China there are different viewpoints on this issue. Some people in the general public, they are scared. But for most academics, I think most scientists support this kind of research—we need to do something for the future”.

Zhoa doubts whether the whole population is ready for genetically modified animals:

“If you want to use modified animals in agriculture, you must consider the public opinion—Can they accept this? Even if the technology is quite safe, it depends on many factors if you want to commercialize this kind of animal in agriculture.”

In a recent opinion piece in the New York Times, Elizabeth Alter, assistant professor of biology at City University of New York, stressed the general need for regulation in the use of CRISPR. 




MORE ON THESE TOPICS | China, CRISPR, genethics

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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Medicos a ‘military target’ in Syria


The war in Syria has taken a massive toll on the country’s healthcare system – 95% of doctors have fled, been detained or killed in the besieged eastern city of Aleppo.

A new report released by Physicians for Human Rights (PHR) this month gives detailed insight into the grave effects of the war on Aleppo medicos. Some of the more striking findings of the report include:

- The ratio of physicians to Aleppo residents is eight times less than what it was in 2010. Currently there is one doctor for every 7,000 residents, compared to one doctor for every 800 residents in 2010.

- Only 10 hospitals – 30% of the 33 functioning hospitals in 2010 – were functioning as of August 2015.

- There are only 80 physicians working in Aleppo (approximately 5% of Aleppo’s pre-war physician population).

- To date, the Syrian government has launched 45 attacks on health facilities in eastern Aleppo city. Most hospitals still functioning in Aleppo have been attacked repeatedly, one up to seven times.  

Donna McKay, PHR’s executive director, is stunned by the total disregard for the rules of war in the Syrian conflict. 

“Typically in a war zone, hospitals are clearly marked and even provide their coordinates to the parties to the conflict as a safety precaution. But in the perverse logic of the Syrian conflict, those working in the medical field are actually forced to hide their identities and their facilities in the desperate hope that this will provide some measure of protection against attacks that have become shockingly commonplace.”

Dr. Michele Heisler, a PHR board member who and one of the report’s investigators, says the government is deliberately undermining healthcare in cities like Aleppo.

“The Syrian government is using attacks on Aleppo’s health care system as a weapon of war. The systematic targeting of hospitals is the biggest impediment to providing health care in Syria.”

The PHR report is just one of a litany of recent publications documenting the systematic targeting of battlefield hospitals in conflict zones around the world.  Numerous attacks on hospitals have also been made in Afghanistan, Gaza and Yemen.

Earlier this month BioEdge reported on the targeting of an MSF hospital by a US special forces in the Afghan town of Kunduz.  




MORE ON THESE TOPICS | Syria, war, war crimes

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 case for banning smoking


Liberalism has led to legalization of many practices hitherto outlawed in Western societies. But to what extent can it used to justify the restriction of certain liberties? Can it, for example, justify banning cigarettes?

Kalle Grill (University of Umea, in Sweden,) and Kristin Voight (McGill) think the answer is yes. In an article published this week in the Journal of Medical Ethics, they argue that the health benefits of banning smoking outweigh the drawbacks of restricting on personal freedom. 

According to Grill and Voight, there are numerous considerations that count strongly in favor of outlawing the sale and smoking of cigarettes:

“As far as the current generation is concerned, then, four factors speak in favour of a ban: first, very large benefits in aggregate well-being. Second, reduced inequality in well-being because the benefits accrue largely to the disadvantaged. Third, improvements in internal autonomy for those who would prefer not to smoke. Fourth, respect for the autonomy of that proportion of the smoking population who want a ban (the evidence we cited suggests that this is about a third).”

Grill and Voight consider at some length the argument that banning cigarettes would place a significant constraint on the freedom of those who wish to smoke (despite the risk of health problems). According to these two ethicists, the immense benefits for public health that come with banning cigarettes far outweigh the drawbacks of limiting the freedom of a small minority of smokers in society.

“We accept that a ban would interfere with some (reasonably) autonomous choices as well as restrict individual freedom, but these negative implications are far outweighed by the well-being gains a ban would imply for both current and future generations…

“If we consider all the people who will be born in this present century, it is hard to see how prevention of the more than one billion expected premature deaths and the substantial individual suffering that comes with it could be outweighed by respect for the choice of some present (and some future would-be) smokers and concern for the restrictions on freedom involved.”

We would be interested to hear what our readers think about this issue. Grill and Voight put forward cogent arguments, but are they sufficient to justify such extensive state paternalism? 




MORE ON THESE TOPICS | liberalism, 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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Some things never change


Hopes for a reform in China’s organ donation practices have faded, with revelations that the Chinese government is simply "reclassifying" organs obtained from executed prisoners.

Since the faux-announcement of an end to organ donation from prisoners in January, the state-controlled Chinese media has repeatedly suggested that the government is disguising inmates’ organs as "altruistic donations" from free citizens.

As early as January, the People’s Daily was reporting that prisoner’s would still be allowed to donate their organs “to atone for their crimes”. The head of China’s organ donation committee, D. Huang Jiefu, said he was confident these ‘voluntary’ donations would prevent any shortfall as a result of the new policy.

In March, Dr. Huang told The Beijing Times, “Once the organs from death-row prisoners who have voluntarily donated are included in our national distribution system, they are counted as voluntary citizen donations.”

According to Huige Li, a Chinese-born doctor at the University of Mainz, the government has merely performed an administrative trick. “They just reclassified prisoners as citizens”, he said.

“The practice there is unethical and should be changed to an ethical practice,” he said of China. “Administrative tricks don’t make it ethical.”

Dr. Torsten Trey executive director of Doctors Against Forced Organ Harvesting, fears that the practice of harvesting prisoners’ organs may never end.

‘‘Some sourcing pathways are altered,’’ Dr. Trey told the New York Times in an email. ‘‘Some previous channels are closed. Others are kept open.’’

Since ‘‘prisoners are under the control of the state, in contrast to free citizens who might enter an organ donation contract on the black market, we have to assume that — at least partially — policy makers, police, prison guards and military personnel are aware and backing the practice,’’ he said.

In a statement in the Beijing Times last year, Huang Jiefu alluded to the new organ procurement strategy:

‘‘Once organs from willing death-row prisoners are included in our national distribution system, they will be considered voluntary citizen donations, and the expression ‘death-row donations’ won’t exist any more.’’

Indeed, the rate of organ donation in China might have even increased. In 2014, about 1,700 people donated about 5,000 organs, Dr. Huang said. But in just the first two months of this year, 381 people donated 937 organs, he told The Beijing Morning News. That could translate to more than 2,300 donations this year. The figure did not include organs from living donors to family members.




MORE ON THESE TOPICS | China, human rights, organ donation

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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Belgian prisoners denied euthanasia


Belgian serial rapist and murderer Frank Den Bleeken, who was serving a life sentence, sparked a controversy by asking for euthanasia in 2014. The government at first granted his request and the bureaucratic machine began whirring. However, it quickly backtracked and placed him in a specialised psychiatric unit where he could get better care.

In the wake of his highly-publicised request, 15 other prisoners have asked for euthanasia in Belgium on the grounds that they have unbearable psychological suffering. This week the head of the country’s euthanasia commission declared that they are not eligible. Dr Wim Distelmans told De Morgen that:

The unbearable suffering  that these prisoners describe is due in large part to the context (ie, prison) and is not the result of an incurable disease … We have advised the interested parties that they are not within the framework and conditions provided by law.

However, this may not be the end of the story. De Morgen reported that better psychiatric treatment would be made available to some or all of the 15 prisoners at the Sint-Kamillus university psychiatric center in Bierbeek. "If the patients maintain their request for euthanasia, then we'll reconsider," Dr Distelmans said.

After the apparently unstoppable expansion of euthanasia requests, Belgium may be applying the brakes, possibly in response to adverse international publicity. Apart from denying euthanasia to the prisoners, a prominent euthanasia doctor, Dr Mark Van Der Hoey, was recently charged with breaking the law after he was filmed euthanasing a patient in an Australian documentary. It was the first time since euthanasia was legalised in Belgium that a doctor has been charged, let alone convicted.  




MORE ON THESE TOPICS | Belgium, euthanasia, prisoner 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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Drug companies flunk transparency test


Only two-thirds of clinical trials for new drugs were disclosed in 2012, according to a new study in BMJ Open by Bioethics International, a non-profit group. In addition, almost half of all reviewed drugs had at least one undisclosed Phase 2 or 3 trial. This lack of transparency breaches legal and ethical standards.

Three of ten companies reviewed in the study—GlaxoSmithKline, Johnson & Johnson, and Pfizer—publicly disclosed all clinical trial results for at least one of their reviewed drugs. But the lowest scoring company, Gilead, disclosed 21% of the trial results for its HIV medicine Stribild. Sanofi's multiple sclerosis drug Aubagio also ranked low for publicly available information.

Incomplete disclosure of clinical trial results impacts the ability of healthcare decision-makers, including physicians, prescription guideline writers, payers and formulary committees, to evaluate the appropriate use of a drug effectively.

Bioethics International has also launched a Good Pharma Scorecard, to independently rank biopharmaceutical companies and new drugs based on key ethics, human rights, and public health criteria, beginning with R&D and clinical trial transparency. The organization plans to release these rankings annually.

"A critical issue facing the biopharmaceutical industry today is the loss of public trust," said Jennifer E. Miller, president of Bioethics International and assistant professor of medical at NYU Langone Medical Center. "Only 17 years ago, the pharmaceutical industry was among the most admired business sector in the world, and today only 12 percent of Americans believe that pharmaceutical companies are honest and ethical.”

“It’s impossible to have evidence-based medicine without the evidence,”  says Dr Miller, the lead author on the study. “People are worried that companies are hiding critical information about new medicines and vaccines -- their safety and efficacy information -- for the sake of profit.”

Professor Art Caplan, also, of NYU Langone Medical Center, said, "Transparency is a critical component of the ethical practice of medical research, and this ranking system has the potential to become a useful vehicle for change by outlining best practices and identifying areas that need improvement."




MORE ON THESE TOPICS | clinical trials, drug testing, transparency

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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A quiet revolution in organ transplant ethics


Earlier this week New York University Langone Medical Center announced the successful completion of the most extensive face transplant to date. It was performed on a volunteer firefighter from Mississippi who suffered a full face and scalp burn in 2001 when a roof collapsed on him during a rescue search.

It was a triumph of modern medicine, but it was also a reminder of the questions which swirl around transplant surgery. Organ transplants have always been regarded as life-saving interventions. Without a heart, lungs or kidneys patients die. But surgeons are now transplanting non-vital body parts, such as the face, uterus, voicebox, penis, ovary and fallopian tube, which require a fresh look at standards of medical ethics, according to bioethicist Art Caplan, of New York University Langone Medical Center. He writes in his column in Forbes magazine:

Unlike heart, liver, kidney and lung transplants, they are being done to enhance the quality of life or to palliate suffering. Some are being done not to save lives but to allow individuals to create new ones. These are manifestly ethical goals. But the shift away from saving lives to making them better involves a shift in the ethical thinking that has long formed the foundation of organ transplantation. They require doctors, patients, regulators and the rest of us to rethink the risk and benefit ratio represented by these new forms of transplant.

Powerful immosuppressive drugs are an integral part of any transplant. But these have side-effects, including organ failure, which shorten a patient’s life span. How ethical is it to increase a patient’s quality of life by shortening his quantity of life? 

Transplanting a face to allow a person to reenter society without stigma or scorn is a wondrous thing. Allowing a woman to bear a child in a society or state where gestational surrogacy is not even an option will find some eager to try. But the new world of transplant requires revisiting some old ways of ethical thinking to help grapple with an entirely new set of opportunities and challenges.





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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Filling out euthanasia death certificates in Quebec


Physician-assisted suicide begins in Quebec on December 10. One of the overlooked consequences of this radical change to the law is how doctors will fill out death certificates. Although the immediate cause of death will be a lethal drug, doctors have been advised to list the cause of death as an underlying medical condition.

The Collège des médecins du Québec and pharmacy and nursing regulators have issued a Practice Guide directing Quebec physicians to falsify death certificates in euthanasia cases.

The physician must write as the immediate cause of death the disease or morbid condition which justified [the medical aid in dying] and caused the death. It is not a question of the manner of death (cardiac arrest), but of the disease, accident or complication that led to the death. The term medical aid in dying should not appear on this document.2

Since untruths are not normally part of medical practice, how does the practice guide justify this? It gives two reasons: first, that some patients may not want their families to know how they died, and second, that it protects families who don't know that their loved ones have been killed by physicians from some unspecified "harm."

Writing in the Protection of Conscience blog, Sean Murphy comments that this is bound to upset both Quebec physicians and families.

Many physicians, coroners and other health care workers may share these concerns, even if they don't have moral reservations about euthanasia. Indeed, euthanasia supporters may worry that mandating deceptive practices is counterproductive and inconsistent with the Practice Guide's expectation that physicians will apply "moral rigour" in processing euthanasia requests.

Others may be uncomfortable lying or dissembling to families about how their loved ones died, which would seem to be unavoidably associated with falsifying causes of death. They may be concerned that falsifying records and lying to families is likely to undermine the trust essential to the practice of medicine. And many people simply have moral or religious objections to falsifying documents, lying, dissembling and other forms of deception under any circumstances.

In addition, a good number of those who object to euthanasia who are not directly involved in lethally injecting a patient will almost certainly consider participation in deception to involve  unacceptable complicity in killing, even if it occurs after the fact.

This is not an unreasonable position. The killing of thousands of hospital patients in Nazi Germany involved extensive falsification of death certificates by physicians, supervised and assisted by state functionaries. Their goal was to convince families that loved ones who had been lethally injected or gassed had died from natural causes. Few would now say that those involved in what Robert J. Lifton called a "bureaucracy of medical deception" were not morally implicated in the deaths of those patients.  




MORE ON THESE TOPICS | Canada, death certificates, euthanasia, Quebec

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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Sociologist opposes ban on Indian commercial surrogacy


Dr Nayna Patel (centre) and her "house of surrogates", in Gujarat   

There is always a flip side to an argument, even if you are talking about “baby farms” of surrogate mothers in India. Sharmila Rudrappa, a sociologist at the University of Texas at Austin, has written a book, Discounted Life: The Price of Global Surrogacy in India,  about the experience of surrogate mothers in Bangalore. In an interview with The Times of India, she criticised moves to decommercialise surrogacy.

This ban is certainly going to dent the earnings of surrogate mothers, but it's not going to be that large. But what's worse is the Centre is looking to ban commercial surrogacy altogether. It wants to institute only altruistic surrogacy , where no money will be exchanged. Look, the cat is out of the bag -the businesses are set, doctors have invested in equipment, networks are established.

To think that you can turn the clock back and go back to altruistic surrogacy is downright ridiculous. The Centre has no interest in regulating surrogacy, and helping surrogate mothers achieve a life of dignity. Now, they are expected to gift their labour and hardship. There may be no contracts. Rich families can coerce or compel their poorer relatives, or maids to engage in "altruistic" surrogacy for them. Under these conditions, exploitation of surrogate mothers will deepen. 

She does not believe that women are necessarily exploited:

The women I met know that surrogacy is risky but still pursue surrogacy because life has become expensive in Bengaluru. None of the women I met was from rural areas. They were all Bengaluru residents, or came from the outskirts. And none of them was desperately poor; they came from multi-income families. They believed that the wages from surrogacy could pull them out of economic uncertainty . 





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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Charlie Sheen’s reluctant bioethics script


The real lives of Hollywood stars often have just as much bioethical interest as their movies. This week Charlie Sheen, a popular actor in film and television with a colourful personal life, admitted that he was HIV positive on the Today show. He was diagnosed about four years ago and the disease is under control.

But this is not just another ho-hum personal tragedy. Apart from his self-destructive drug and alcohol abuse, compulsive promiscuity is part of Sheen’s public image and questions were immediately raised about whether he had infected one of his wives or many sex partners without informing them of his HIV status. Knowingly infecting a partner is a criminal offence in California. Prosecution is rare because a high bar has been set for the standard of proof but Sheen could be sued civilly for negligence, emotional distress or sexual battery.

The 50-year-old actor went public to protect himself against blackmailers who had extorted US$4 million from him over the past four years. “I release myself from this prison today,” he said.  “I have paid those people — not that many — but enough to where it has depleted the future. Enough to bring it into the millions.”

The bioethical take-away? The extreme importance of protecting medical record privacy.

According to the Washington Post, “opportunistic criminals are beginning to resort to similar schemes targeted at anyone who might potentially be hurt or embarrassed if others had access to information about their mental illness, nose job, abortion, or the fact that they're going through bottles of Viagra”.

Now that doctors and health care institutions are digitising all of their medical records, hackers are having a field day. The WaPo says:  

The Identity Theft Report Center reported in January that breaches in the medical/health care industry topped its list of breaches in 2014 with 42.5 percent of the 783 incidents they tracked. The 333 medical/health care incidents affected 8,277,991 records and took place at small health care clinics as well as a diverse group of large organizations, including Novo Nordisk, Tennessee's State Insurance Plan, Touchstone Medical Imaging, the University of California Davis Health System and the Kaiser Foundation Health Plan of Colorado.

Charlie Sheen’s tormenters obtained their information the old-fashioned way and few people are as rich or famous as he is. But his admission is an example of the down side of integrating medicine and information technology. 




MORE ON THESE TOPICS | medical privacy, privacy

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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Dutch doctors puzzled by religious immigrants’ attitude toward euthanasia


Dr Maria van den Muijsenbergh   

Dutch doctors who are accustomed to offering sick patients the option of euthanasia find it difficult to cope with immigrants with very different belief systems. Writing in the magazine of the Dutch right-to-die association, Relevant, general practitioner Maria van den Muijsenbergh says that many of the Netherlands’s numerous immigrants are more tolerant of pain because they offer their lives to God and that they believe that euthanasia is wicked.

She says in an interview:

‘The Netherlands is a country with liberal opinions about euthanasia and a country where it is not taken for granted to be religious. Nearly all non-western migrants are religious. Not only Muslims but also orthodox–Christian Armenians and others coming from Africa. On the deathbed religion plays a major role. God or Allah decides when you have to go. Euthanasia is therefore wicked. The problem with migrants is they do not even want palliative sedation. For a Dutch doctor that can be difficult’

[I had a Muslim patient] who wanted to stay lucid for Allah. I gave him a little morphine but that did not work. He stayed tight in the chest [breathless]. It was very hard to look at for the children and for me. And very hard to do nothing. The man took it very well though. As doctor you have to ask yourself is it [hard] for the patient or for me?’

Terminal sedation, or rendering patients unconscious while they starve to death, is a common alternative to euthanasia with a needle. However, immigrants don’t want this either. “God has given you this body and you have to look after it” is the thought behind. So they will not stop eating or drinking. “And that is difficult to a doctor,” she says.

She remembered one Armenian patient: “He could not swallow his food and could hardly drink. His family wanted me to insert a drip. The patient wanted it also. For me it was hard, in my eyes inserting a drip in a dying person is not good care. But the role of the family is big.”

Does the existence of euthanasia actually make the last days of immigrants more difficult? Dr van den Muijsenbergh says that “Patients often refuse morphine because they think the doctor may kill them then.”   

For more information about how Dutch doctors assist migrants, click here. For the Dutch original of the interview, click here.




MORE ON THESE TOPICS | assisted suicide, 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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10% of elderly Americans abused, says NEJM


Doctors need to be able to recognise the tell-tale signs of elder abuse, according to the New England Journal of Medicine, because about 10% of the elderly experience some form of abuse. “Thus, a busy physician caring for older adults will encounter a victim of such abuse on a frequent basis, regardless of whether the physician recognizes the abuse,” write Mark S. Lachs and Karl A. Pillemer.

Those most at risk are women, people living in a “shared living environment”, those who relatively young, the poor, and people who are social isolated. Most abuse in nursing homes comes from fellow residents. However, just living with other people, even family members, is also a risk factor, as there will be more opportunities for conflict.

The authors cateogrise abuse in five ways:

physical abuse, or acts carried out with the intention to cause physical pain or injury; psychological or verbal abuse, defined as acts carried out with the aim of causing emotional pain or injury; sexual abuse, defined as nonconsensual sexual contact of any kind; financial exploitation, involving the misappropriation of an older person’s money or property; and neglect, or the failure of a designated caregiver to meet the needs of a dependent older person.

Financial abuse, they say, is virtually “epidemic”. “Recent studies suggest that financial exploitation is emerging as the most prevalent form of abuse; by the time cases are detected, the older adult’s financial resources have often been drastically reduced — a fact that makes swift detection and intervention critical.”




MORE ON THESE TOPICS | elder abuse, end-of-life care

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End ‘stem cell tourism,’ experts urge


Stem cell scientists appear to have oversold their product. In debates a decade ago, scientists, foundations and patient advocacy groups spoke glibly of cures for chronic diseases which would come after embryonic stem cell research was legalised. They made a rod for their own back.

The cures have been slow in coming, but not the hucksters, charlatans and snake-oil salesmen. According to a paper in BMC Medical Ethics by Kirstin Matthews, of Rice University, and Ana Iltis, of Wake Forest University, disillusioned patients, tired of waiting for the cures they were promised, are seeking unproven stem cell-based treatments that are causing more harm than good.

The continued marketing and use of experimental stem cell-based interventions inside and outside the United States is problematic and unsustainable.

The rise in stem cell tourism is a recent phenomenon, write Matthews and Ilitis. Scientists have long envisioned their stem cell research would lead to cures in the near future. In 2004, patient-advocate groups were major players in helping pass and implement significant public policy and funding initiatives in stem cells and regenerative medicine. In the following years, advocates were also actively engaged in Washington DC, encouraging policymakers to broaden embryonic stem cell research funding, which was ultimately passed after President Barack Obama came into office. After waiting more than 10 years, many of these same patients are now approaching clinics around the world that are offering experimental stem cell-based interventions instead of waiting for scientists in the US to complete clinical trials.

Central problems of stem cell tourism include the lack of patient protection, US liability standards, regulation of clinical sites and clinician licensing, the authors said. "These interventions have insufficient evidence of safety and efficacy; patients may be wasting money and time, and they may be forgoing other opportunities for an intervention that has not been shown to be safe and effective," they write. "Current practices do not contribute to scientific progress because the data from the procedures are unsuitable for follow-up research to measure outcomes. In addition, there is no assurance for patients that they are receiving the interventions promised or of what dosage they are receiving. Furthermore, there is inconsistent or nonexistent follow-up care."

Using HIV, AIDS and breast cancer advocate cases as examples, Matthews and Iltis identify key priorities and goals for a policy effort to combat stem cell tourism.

"Policy should be aimed at bringing patients home and fostering responsible scientific research as well as access for patients," they wrote. "This will require discussions about alternative approaches to the design and conduct of clinical trials as well as to how interventions are approved by the Food and Drug Administration."




MORE ON THESE TOPICS | stem cell tourism, stem cells

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 doctors snared by female extortionists


Whatsoever house I may enter, my visit shall be for the convenience and advantage of the patient; and I will willingly refrain … from acts of an amorous nature, whatever may be the rank of those who it may be my duty to cure, whether mistress or servant, bond or free.”  

Indian doctors have recently been reminded of the perennial relevance of this ancient advice after the arrest of a gang of extortioners in New Delhi. Attractive women have been visiting doctors and after some treatment inviting them out for romantic engagements. Then the women accuse the doctors of rape and demand 50 lakh rupees, about US$75,000.

At least two women, Kuldeep Kaur, 32, and Sweta Panchal, 26, have been arrested, along with two male companions. They were caught after one doctor, who was also beaten up badly complained to the police. According to The Times of India, the gang got the idea from a Hollywood thriller. They appear to have targeted about 10 doctors.

The official code of medical ethics for doctors is more or less the same in India as in the United States and Australia. The American Medical Association says that any romantic relationship must not be concurrent with treatment. The Medical Board of Australia says that any sexual relationship with a patient, regardless of consent, is unethical and unprofessional. The Indian Medical Association says that adultery or other misconduct is liable for disciplinary action. However, according to the Times:

However, medical sources say, romantic relations are not all that rare in hospitals. As a doctor, who did not want to be named, admitted to TOI on Tuesday, "Doctors dating patients is not uncommon at all. The trend, which has been reported widely in western countries, is picking up in India."

"The doctor who claims he has been honey-trapped by a young woman patient is at fault," states Dr Girish Tyagi, registrar of the Delhi Medical Council. "How could he have got into a relationship with a patient?"




MORE ON THESE TOPICS | Hippocratic Oath, medical ethics

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‘The bioethics revolution is over’


In the 1960s and 70s bioethics was “revolutionary”, bringing a new perspective to medical issues. However, as more and more experts put the field under their microscopes, it has been “normalised” – so says Baruch Brody, a leading American bioethicist.

According to a blog post by Craig Klugman at bioethics.net, Brody relied upon Thomas Kuhn’s analysis of scientific revolutions.

Revolutionary science is what happens when an accumulation of data and observations shows that the world does not work as theory predicts … But once a new theory is proposed and accepted, the work of science moves to normal science where the theory is further proven, refined and its implications and applications are explored.

This, says Brody, is what has happened to bioethics. The revolutionary moment came when:

Bioethics moved philosophy out of the ivory tower and into the clinic; it connected humanities scholars with government panels and the media; and it shifted the focus from doctors paternalistically making decisions to patient autonomy. Bioethics revolutionized the way that patients interacted with the health care system and providers (in fact, they became providers), how we handle human subjects research, with how moral issues in health care settings are dealt.

But nowadays, bioethics is in danger of becoming boring. “Even the work in bioethics is not earth-shattering. Year after year at the ASBH meetings I hear colleagues say, ‘There’s nothing new here,’” says Klugman. In fact, this question was raised as long ago as 1999 by Al Jonsen, one of the pioneers of the discipline, in an article headlined, “Why has bioethics become so boring?”

Klugman concludes by asking what a revolution in contemporary bioethics would look like: “A new theory? New territory? New media outlets? Or the end of bioethics?”




MORE ON THESE TOPICS | bioethics, future 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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Euthanasia debate flares up in Australia


The debate over legalising euthanasia has flared up again in Australia, with both opponents and advocates making spirited contributions.

Last Wednesday, Australian doctor Rodney Syme appeared on the popular talk show Q and A and publically admitted to having supplied Nembutal to a man. "I have openly gone and stated to the police that I have given a man Nembutal," he said. "I have described the circumstances in which that happened.”

Syme says he is attempting to provoke a test-case for euthanasia law in Australia.

Another panellist on the show, television personality Andrew Denton, defended proposed euthanasia law reform against the so-called ‘slippery slope’ argument.

“I would remind you of the core things about this law. It is voluntary. You have to be an adult who is compos [mentis], who understands what they’re talking about,” he said.

Denton has become a new prominent advocate for euthanasia in Australia, after he went on a lengthy ‘study tour’ of Belgium and the Netherlands to learn about the implementation of euthanasia law there.

But critics too have made their contributions. In the past week two prominent doctors published opinion pieces in national mastheads arguing against legalising euthanasia. Palliative Care specialist Dr. Ranjana Srivastava argued that legal euthanasia is a poor fix for a broader societal problem.  

“The terminally ill patients who suffer doubly are those who are ostracised by their relatives, estranged from their children, divorced by their spouse and left to shoulder their burden alone. There is no easy solution to this intractable problem, which is really a failure of modern society and its fraying relationships rather than a limitation of medicine. Downplaying the value of palliative care will confuse patients and do them a disservice.”

Similarly, Dr Richard Chye, director of palliative care at St. Vincent’s Hospital in Sydney, argued that euthanasia would turn death into a technical problem to be fixed, rather than an existential reality that patients must come to terms with (and that good palliative care can make more bearable).

I agree there are problems with how Australians are dying, but I think access to good-quality palliative care can change that. Australians want to die at home but need better support services to do so. Carers need respite and your postcode often determines access to services. These are the rights we are currently denied. This is what we should be getting up in arms about.




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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US Supreme Court considers religious exemptions to Obamacare


The US Supreme Court has announced that it will hear another case concerning religious exemptions to the prescriptions laid down by Obamacare.

The case in question, a joint action by various religious organisations in the US, will challenge the current ‘opt out’ system outlined in the Affordable Care Act. As it stands, religious organisations can opt out of providing contraceptives by notifying the government in writing. The government will then step in and instruct the organization's insurer or third-party administrator to provide the contraceptive coverage at no cost to the employers.

But faith-affiliated institutions like Baltimore’s Little Sisters of the Poor Nursing Home object to exemption legislation. They argue that even the signing of a form directing insurers to provide contraceptives is a form of co-operation in a morally illicit government program.

Last July, the Little Sisters of the Poor lost their case against the mandate at the 10th Circuit Court of Appeals. The court ruled that the “accommodation” offered by the administration to religious groups like the sisters did not put a “substantial burden” on their religious beliefs and “relieves” them “from complicity” in actions they find objectionable.

Many see the case as misguided. The New York Times published a scathing editorial arguing the plaintiff’s case was ‘fallacious’:

“In a secular society, religious freedom demands respect and accommodation, not a veto over government action that benefits others who believe differently.”  

Others welcomed the supreme court’s decision. Michael Warsaw, chairman and CEO of EWTN Global Catholic Network, said, “Today’s decision by the US Supreme Court to take up the HHS contraceptive mandate cases, including the one filed by the Little Sisters of the Poor, is wonderful news."





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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Mandating compassion


How are we to achieve a compassionate healthcare system? This question has been posed in various papers and books over the years, and most recently in a feature article in the Journal of Medical Ethics.

In his brief paper ‘Smiling through clenched teeth: why compassion cannot be written into the rules’, Dr. Yinchu Wang of Barts and the London Medical School argues that we cannot mandate compassion through healthcare rules and guidelines. Wang suggests that ‘emotional rules’ stifle real emotional engagement with patients and in many cases are totally impracticable.

“…The authorities are now proposing to officialise [compassion]. Perhaps not realising that even in the private sector, such moves had faced difficulties and accrued significant human costs…

 

“The first drawback is the damage it can do to the service worker…” Wang suggests that a worker will either not want to conform to the requirements, or will feel frustrated because they are unable to achieve them.

He continues:

“…The demand for compassion may also have a negative impact on the service users. We have all become adept at recognising and discounting enforced emotions…”

 

“…[this sort of policy] ignores that such measures are limited by practical constraints…”

Wang doubts that a formalization of emotion could ever avoid the usual obstacles:

“…As long as contractualism remains the mainstay of doctor–patient relationships, we can expect compassion to always take a backseat. Any rule concocted to demand compassion from the healthcare professional is unlikely to yield results…”

Some agree with Wang, but argue that it is not a question of structural change; we need to get rid of ‘emotional expectations’ altogether. In a 2013 post on the blog Practical Ethics, Hannah Maslen suggested that emotions may not be as important as many think:

“that lack of emotional compassion does not necessarily result in cruelty or incompetence. Whilst many doctors and nurses and surgeons will care about their patients, they should not be expected to experience strong emotions towards them or their situations.”

In the recently released medical ethics book Health Humanities, Paul Crawford and Brian Adams et al call for a more nuanced approach to educing compassion in healthcare practitioners:

“…The development of more compassionate health services will need to go deeper than mandating angelic nurses or setting up initiatives for compassion to be poured in as a ‘skill’ through linear or values-based criteria…

 

“…Compassionate care will be achieved in and by governments and their healthcare organizations designing low-threat, compassion-generating spaces and processes, rather than through spurious ‘compassion training’ of the workforce.”





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 conception: 10 years without anonymity


Roughly a decade ago the UK Parliament amended sperm donor legislation, removing anonymity for donors (see The Human Fertilisation and Embryology Authority (Disclosure of Donor Information) Regulations 2004). Men who donated sperm on or after April 1 2005 contacted by any potential children they fathered. 

UK healthcare analysts are now looking back on the radical changes, and coming to various conclusions about the merits of the new system. At a recent conference in London, '10 Years Since the End of Donor Anonymity: Have We Got It Right?', several parties presented their theories on how anonymity affects sperm donation and donor conception.

Dr Jo Rose, herself a donor conceived child, argued that donor-conceived children should, as a matter of course, have more support and the right to access full and complete information about their genetic parent, particularly because “wrong and incomplete medical history kills people”.

Eric Blyth, professor of social work at the University of Huddersfield, argued for the retrospective identification of donors before 2005. Blyth suggested that it was unfair that the 20,000+ children conceived before this cut off date were being deprived of familial information.

Julia Tizzard of the HFEA argued that unreliable metrics make it very difficult to measure the real impact of the legislation.

Some sperm bank managers say anonymity has decreased rates of donation, while others say the impact has been negligible. 




MORE ON THESE TOPICS | donor anonymity, IVF, UK

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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How should the media cover euthanasia?


Because media coverage of suicide could easily lead to copycat suicides, in 2008 the World Health Organization issued a long list of guidelines for journalists. It advises them to: “Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems”, “Avoid providing detailed information about the site of a completed or attempted suicide”, and to “Show due consideration for people bereaved by suicide”.

Campaigns for assisted suicide and euthanasia ignore this. In addition to sympathetic headlines, media organisations are producing YouTube videos which paint a glowing picture of assisted dying, illustrate clearly how it is carried out, and draw teary relatives into the story.

In recent months there have been numerous examples. A 29-year-old American woman, Brittany Maynard, made two videos (here and here) with the help of the assisted suicide lobby group Compassion & Choices which were seen by millions of people, before she died through assisted suicide in Oregon. Australia’s SBS network recently filmed a Belgian doctor giving an elderly, depressed woman a lethal injection. She died on camera. 

The latest development is a 21-minute video made by The Economist and part-funded by Virgin Unite, a charity financed by British billionaire Richard Branson, about a 24-year-old Belgian woman suffering from severe depression who has asked for euthanasia. Anticipating objections, the first frame reads: “Warning. There are some scenes in this film which some viewers may find distressing.” It is a necessary precaution.

Although outwardly normal, Emily is severely troubled. There is a graphic scene in which she displays the scars on her arms from self-mutilation. In another, three doctors explain to her exactly how she will die, and another in which a psychiatrist explains magisterially why euthanasia may be suitable for her.

The Economist’s journalist and cameraman must have spent days with Emily, staging scenes with her doctors, her mother and her friends. They are hardly detached observers; instead they become supporters of her choice.

Their documentary transforms a painful mental illness into the voyeurism of reality TV. Euthanasia is often described as the most intimate and personal choice a person will ever make. But on YouTube a fragile, suffering woman has become a tool for The Economst's international public relations campaign.

One hopes that The Economist has heeded the last item in WHO’s advice to journalists: “Recognize that media professionals themselves may be affected by stories about suicide”.

In the end, the very end, the moment in which the doctor arrives to give her a lethal injection, Emily stepped back and said that she did not want to die. Perhaps the extra attention given her by the journalists made her feel loved and comforted. Perhaps, as supporters of euthanasia argue, knowing that death was readily available gave her courage to soldier on.

Was The Economist relieved – or disappointed? It’s hard to say. 

The world’s most admired news magazine is campaigning strongly for the introduction of legalised doctor-assisted dying around the world, not just in the UK, and not just for terminal conditions, but for mental illness as well. In addition to “24 and Ready to Die”, it has also created a brief video advertisement which aired in London and Berlin, “Could you live a life like this?”.

For Zanny Minton Beddoes, the new editor-in-chief, this is a crusade. She says: “For The Economist, the case for allowing doctor-assisted dying relies on personal choice and individual autonomy. Our liberal values and respect for human dignity mean that for this paper, doctor-assisted dying is a cause worth championing.”

A key plank in the assisted dying platform is that it is different from suicide. Even if that were the case, surely immense discretion is needed to prevent vulnerable people from being seduced rather than persuaded. But there are no guidelines for reporting euthanasia. Does the WHO rule book need to be rewritten?

Australian guidelines for reporting suicide





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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Ben Carson: the candidate from bioethics


During the George W. Bush administration, Ben Carson was a member of the President’s Council on Bioethics.  Compared to separating conjoined twins in a landmark surgical procedure, this might seem like a small item on his resume. But there’s good reason to think that his bioethics experience helped shape the thinking that has made him so appealing to many social conservatives. 

I made the call about Carson’s appeal earlier this year in the Huffington Post.  Talking about who might win the hearts of traditionalists I wrote that “at the moment the early favorite is Ben Carson. He seems to have been sent down from central casting for the role. An up-by-his-bootstraps African-American neurosurgeon who speaks softly but carries a big rhetorical scalpel, Carson was a member of President George W. Bush's bioethics council, which was notably skeptical about biotechnological innovations that challenged traditional notions of and respect for human beings. Enthusiasm for Carson could power him through the early going and give him reason to hang in for quite a while.”

The professional pundits and politicos missed this point because they failed to understand how central certain bioethical values are to social conservatives, especially evangelical Christians. For decades, bioethics scholars have been arguing about the ethics of new reproductive technologies like in vitro fertilization and the prospect that while preventing suffering they might also undermine human dignity. 

Carson was a member of the bioethics council when they issued a report on embryonic stem cell research in 2005. At that time, conservatives were hoping for an alternative to the destruction of embryos in laboratories that wished to obtain valuable stem cells that might help scientists understand the origins of disease and how to use those cells for new treatments. In 2008 presidential candidate John McCain got in trouble with social conservatives for failing to oppose human embryonic stem cell research.

Carson is a keen observer, a quality that served him well as a surgeon who has to appreciate what is happening to the body on the table while he is operating. He was perceptive enough to observe the important social currents swirling around bioethics. As a surgeon, he also has a quality usually associated with the current president that he would like to replace: audacity. Anyone who cuts open another human being to heal them has to have a lot of that, not to mention the audacity required to think he should be president of the United States. Yet this perceptive and audacious surgeon wraps himself in a gentle and firm demeanor and “gifted hands” that understandably inspired awe in the operating room and makes him attractive to many voters.

Just now a new bioethics debate is giving Carson a golden opportunity if it comes up in a debate. The National Academies, along with science organizations around the world, are discussing the use of new technologies that can redesign or “edit” the genes in embryos. Should human beings use the power of science to shape the genetics of future generations? No other candidate is so well positioned to adopt a strong position on this issue that would solidify his hold on the Republican base and certify him as the candidate from bioethics.

Jonathan D. Moreno is the David and Lyn Silfen University Professor at the University of Pennsylvania and a senior fellow at the Center for American Progress Action Fund. This article originally appeared at The Hill and has been republished with permission. 




MORE ON THESE TOPICS | 2016 US election, Ben Carson, bioethics

This article is published by Jonathan D. Moreno 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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Redefining the rules of war


Fires burn in part of the MSF hospital after air strike on October 3 (AFP: MSF)   

Medecins San Frontieres has accused the US special forces of “war crimes” after an American AC-130 gunship attacked a field hospital in the northern Afghan city of Kunduz in early October.

According to MSF, the incident left at least 30 staff and patients dead. During the one hour attack, “patients burned in their beds, medical staff were decapitated and lost limbs, and others were shot by the circling AC-130 gunship while fleeing the burning building”.

MSF staff frantically try to contact NATO during the attack, but the response was slow. The US government later apologised, but MSF are not satisfied and is demanding a full investigation.

MSF believes that the attack may have been deliberate, and have called on the nations of the world to declare “if the rules of war still apply”: “We need a clear commitment that the act of providing medical care will never make us a target.”

In an opinion piece in Newsweek, MSF UK executive director Vickie Hawkins further emphasised the seriousness of the situation. Discussing a litany of attacks in the past two years, she asked,

“What are medical workers from Afghanistan to Syria, Yemen and beyond to do if their protection is stripped from them? What does it mean for patients if their ability to access medical care is destroyed?” 




MORE ON THESE TOPICS | ethics of war, medicine, war

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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Delusional but autonomous


Can a confused, lonely, bi-polar, sick 73-year-old with religious delusions refuse an operation which will save his life?

Yes, says the UK’s Court  of Protection. A man known as Mr B is a diabetic with a severely infected leg. His life can only be saved if it is amputated below the knee, according to the best medical advice. Without this, he will die of the infection, possibly within a few days. Mr B has no one else in the world to care for him. “He has no next of kin. No one has ever visited him in hospital and no one ever will,” observes the judge.

In the opinion of the judge he does not have the mental capacity to make a rational decisions about his illness. On the other hand, Mr B, who is not afraid of dying and bears his pain with great fortitude, does not agree with the doctors:  

“I don't want an operation. I'm not afraid of dying, I know where I'm going. The angels have told me I am going to heaven. I have no regrets. It would be a better life than this. I don't want to go into a nursing home, [my partner] died there. I don't want my leg tampered with. I know the seriousness, I just want them to continue what they're doing. I don't want it. I'm not afraid of death. I don't want interference. Even if I'm going to die, I don't want the operation.”.

The next question, then, is what is in Mr Bs “best interests”. A person in full possession of his faculties would probably answer “amputation”. But the judge points out that

“Mr B's mental health and well-being will be further compromised following an operation. Even if he does not suffer some of the risks of amputation (phantom pain etc.), the loss of his foot will be a continual reminder that his wishes were not respected. Further to that, his religious sentiments will undoubtedly