Tuesday, May 30, 2017

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I can't say that I agree with Nietzsche on everything, but he was onto something when he wrote, "what does not kill a database makes it stronger". 

We were hit by a bug over the weekend and this mini-Götterdämmerung  has delayed the newsletter. But soon, touch wood, it will be stronger than ever. Thanks, Friedrich. 

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Michael Cook
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This week in BioEdge

2017-04-17 1:15 PM
‘Existential distress’ drives MAiD requests: Canadian study
by | May 28, 2017
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tags: canada, euthanasia, existential distress, existential suffering

The debate over euthanasia is often framed in terms of unbearable pain. Yet a new review of assisted dying cases in Toronto suggests that patients are primarily concerned about a “loss of control” over their lives, rather than refractory pain symptoms.

The study, published in the current edition of the New England Journal of Medicine, reviewed data on assisted dying cases from the University Hospital Network (UNH), an Ontario healthcare and medical research organisation that operates four major hospitals in the Toronto area.

According the researchers, the primary reason why UNH patients requested assisted dying was to relieve “existential distress”. The review states:

“Those who received MAiD tended to be white and relatively affluent and indicated that loss of autonomy was the primary reason for their request. Other common reasons included the wish to avoid burdening others or losing dignity and the intolerability of not being able to enjoy one’s life. Few patients cited inadequate control of pain or other symptoms.”

According to Madeline Li, the principal author of the study, patients primarily wanted control over how their lives will end: “Their quality of life is not what they want.” Li told the Washington Post. “They are mostly educated and affluent — people who are used to being successful and in control of their lives, and it’s how they want their death to be”.

Similar findings have been reported in studies of US and European data.

In a recent article in the Medical Journal of Australia, American bioethicist Ezekiel Emanuel argued that the presence of existential distress in assisted dying cases counts as a reason not to legalise euthanasia:

“What is then the great impetus to legalise interventions to end lives for a small minority of patients who are depressed, worried about losing autonomy and being tired of life? We should end the focus on the media frenzy about euthanasia and PAS as if it were the panacea to improving end-of-life care.”

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Abortion debate front and centre in UK elections
by | May 28, 2017
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tags: abortion, northern ireland, uk

While the last UK parliament was preoccupied with euthanasia and gene-editing, abortion is the main bioethical issue on the agenda for Britain’s June 8 general election. Party leaders have been criticised for being both too strict and too lax in their policies.

Earlier this month, pro-life organisations in Northern Ireland criticised Jeremy Corbyn’s Labour Party, after a leaked draft version of the party’s manifesto suggested that it would broaden access to abortion in Northern Ireland. According to media sources, the party was proposing to override Northern Ireland’s legislative assembly and extend the 1967 Abortion Act to region -- which currently only allows abortions where a woman’s life or health is at serious risk.

Significant pressure from lobby groups has led to a major revision of the document, with the final version of the manifesto stating merely that “[the Labour Party]...will work with the Assembly to extend [the right to abortion] to women in Northern Ireland.”

Meanwhile, Liberal Democrat leader Tim Farron has come under fire for his apparent opposition to abortion. According to an article published in The Guardian, Farron said in a 2007 interview that he believed abortion was “wrong at any time”.

Responding to media questioning, Farron said he did not remember giving the interview, and that abortion should be “safe and legal”.

Farron’s comments come in the wake of a poll by lobby group Where Do They Stand?, which found that nearly two-thirds of the 2,008 people questioned supported restrictions on abortion beyond 20 weeks’ gestation. Some 20% thought it should be cut to 12 weeks (or three months). 

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Peer review system stumbles over fake gender-studies papers
by | May 28, 2017
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tags: gender studies, hoaxes

The field of gender studies is often criticised for its obscure and verbose scholarship. Two recent hoax studies have fuelled renewed criticism.

Self-proclaimed sceptics James Lindsay and Peter Boghossian ridiculed the journal Cogent Social Sciences after it published their hoax-paper entitled “The conceptual penis as a social construct”. The rambling paper, which argues that the penis is an incoherent social construct, passed the peer-review process with flying colours. According to Lindsay and Boghossian:

“The reviewers were amazingly encouraging, giving us very high marks in nearly every category. For example, one reviewer graded our thesis statement “sound” and praised it thusly, “It capturs [sic] the issue of hypermasculinity through a multi-dimensional and nonlinear process” (which we take to mean that it wanders aimlessly through many layers of jargon and nonsense).”

The Taylor & Francis journal has since retracted the study and announced that it is conducting “a thorough investigation”.

A similar hoax paper was recently published by Philippe Huneman and Anouk Barberousse in the journal Badiou Studies. That paper, entitled “Ontology, Neutrality and the Strive for (non-)Being-Queer,” was even more abstruse than the Lindsay and Boghossian publication. The authors purported to “show that the genuine subject of feminism is the “many” that is negatively referred to through the “count-as-one” posited by the gendering of “the” woman.”

While the authors attribute their success to the pseudo-intellectualism in gender studies, others suggest that the hoaxes are indicative of a general crisis in academic publishing.

“The hoax says more about the pitfalls of the publishing industry than the field of gender studies”, wrote staff from the website Retraction Watch. “[Many] will by now be familiar with many of the hoaxes that have crossed our desks, affecting journals in fields ranging from philosophy to medicine to urology”.  

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Euthanasia bills sink in Tasmania and Maine
by | May 28, 2017
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tags: euthanasia, maine, tasmania

While support appears to be growing for euthanasia in several countries, many legislatures that remain strongly opposed to proposal. Two euthanasia bills were defeated this week -- one in the US state of Maine and the other in the Australian state of Tasmania.

The debate in Maine was fierce, with surprisingly strong support coming from Republican representatives in the parliament.

The bill was sponsored by Republican Senator Roger Katz of Augusta, who has been a longstanding proponent of state-sanctioned assisted dying. “People have the right to make medical decisions for themselves and also have the right to refuse treatment”, Katz told reporters.

Yet the majority of the House disagreed, with the bill voted down 85-61. “My conscience tells me that this is the wrong direction for a variety of reasons,” said Democrat Representative Gay Grant, who strongly opposes euthanasia. “This is not a partisan issue. It is a human issue.”

Opposition was even stronger in the Tasmanian state of Australia, where the Lower House voted 16-8 against the bill. Many were concerned that the bill was too broad, and would put vulnerable social groups at risk. "I am concerned about the nature of assisted dying being available to those with a non-terminal illness and those of a young age”, said Premier Will Hodgman, who voted against the bill.

Wesley Smith sees recently defeated euthanasia bills as a clear sign of ongoing resistance to the idea of euthanasia: “We have been told over many years that assisted suicide is unstoppable, an idea for which the time has come. Baloney.” 

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Fighting the scourge of ‘red envelopes’ for China’s doctors
by | May 28, 2017
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tags: china, corruption, medical ethics, red envelopes

In the Ming Dynasty (17th century), an eminent doctor, Chen Shigong, promulgated his Five Precepts and Ten Musts for Medical Practitioners. Chen’s five precepts are: “No despising the poor and currying favour with the rich; No committing unprincipled conduct; No acting upon mercenary motives; No neglecting of duty; No being flippant and hypocritical”.

While these noble aspirations still resonate with doctors, the medical profession in China is demoralised. They feel overworked and victimised. More than 90% feel that they are underpaid; 79% say that they would not choose medicine again if given a second chance. Violence against doctors is a serious problem. In 2016 alone, 7 people were condemned to death for murdering medical practitioners.

Therefore, contend three Chinese medical ethicists in Developing World Bioethics, it is unsurprising that doctors in China are willing to accept “red packets” in connection with their services. The ancient practice of offering a gift in gratitude has been transformed into a system for bribing doctors to provide services. The official government line is that this constitutes corruption, but both doctors and patients look upon it as recognition of their professional status and dignity. There are few complaints or arrests.

The authors say that the solution is not higher wages – which is a convenient line for supporters of China’s socialist medicine. They argue instead that ethical training is needed to root out the corrupting scourge of red packets. Apparently this is almost completely lacking in Chinese medical schools.

For a long time, there has been a general lack of medical ethics and humanities education in the training of medical practitioners. In the medical universities and nursing schools across the country there is a dearth of such courses available for students to choose from ...

Executive pronouncements mandating prohibition, punishment, or salary increases alone will not help find the final solution to the problem. What will really enable the issue to be handled successfully in the end will be a massive and consistent effort to boost the medical humanities and ethics education among medical practitioners and those about to enter the profession. It will be a new generation of medical professionals, with their restored sense of dignity, their professional pride and their renewed ability to make sound moral judgments, who will say a resounding NO to the red envelopes.

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Are Chinese police collecting DNA for all Muslims in Xinjiang province?
by | May 28, 2017
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tags: dna database, dna tests

China may be preparing to collect DNA profile of a large proportion – or even all – of the Muslim Uighur population in the western region of Xinjiang. According to a report by Associated Press, the government has been buying equipment which will allow it to process vast numbers of DNA profiles.

Xinjiang borders on several Muslim-majority countries, including Afghanistan, and there is simmering discontent amongst the Uighurs. Some have joined ISIS and Al-Qaeda. There have been a number of lethal knife attacks and bombings by separatists. The central government has responded by encouraging migration by Han Chinese and by greatly increased surveillance and repression. According to AP, these include “Those have included mandatory satellite tracking systems for vehicles in some areas, rewards for terror-related tips and prohibitions against women wearing veils and men growing beards.”

“Xinjiang is already an oppressive region with a high level of surveillance,” said Human Rights Watch researcher Maya Wang. “To collect even more information on a mass scale unrelated to criminal investigation opens the door for an even greater level of surveillance and control.”

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A feminist argument against artificial gametes
by | May 28, 2017
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tags: in vitro gametogenesis, stem cell ethics, stem cell research

In vitro gametogenesis (IVG)is one of the nightmares of conservative bioethicists. Developing gametes from pluripotent stem cells would allow research into basic science about reproduction, would relieve women of the painful experience of retrieving eggs for IVF, and – most controversial of all -- would increase the range of reproduction options. Gay and lesbian couples would no longer need donations from the opposite sex to create a child; singles could create their own eggs and sperm to have a child genetically identical to themselves.

This is no longer science fiction. Japanese scientists have created fertile mouse pups using eggs created with IVG. It may take years to develop the technique for humans, but it does seem possible.

But it is not just “conservatives” who are disturbed by this possibility, as a blog post in Impact Ethics by Françoise Baylis demonstrates. Baylis, a Canadian bioethicist with a feminist slant, argues that it would be wrong to use this technology because it assumes that a genetic link with a child is essential:

in vitro gametogenesis does not obviously respond to a medical need. Rather, it aims to satisfy a personal interest on the part of prospective parents – namely, a want for genetically-related children. I reject the view that genetic ties are critically important to family-making. Indeed, I believe that we should be wary of overvaluing genetic-relatedness especially when this undermines the legitimacy of social parenting through adoption, blended families, other-mothering and so on.

More generally, any and all practices that reinforce social biases toward genetic parentage are deeply problematic. They contribute to discrimination by reinforcing racism and also contribute to stigmatization by suggesting that some genes are better than others. These facts behove us to recognize the ways in which in vitro gametogenesis, like other reproductive technologies, promotes a modern type of eugenics.

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Texas DA opposes parole for nurse killer of up to 60 infants
by | May 28, 2017
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tags: healthcare killers, texas

As if anyone needed reminding that healthcare workers can use their skill to kill as well as heal, the bizarre case of Texas nurse Genene Jones has surfaced again in the American media.

Ms Jones was convicted in 1984 of murdering one infant with a muscle relaxant and of harming another with a blood thinning agent. She was sentenced to concurrent 99 and 60 year terms behind bars. However, she is due to be released next March under a mandatory release law, which has alarmed the relatives of her victims.

Last week the Bexar County district attorney announced that she would be charged with another death – an infant injected with an anti-seizure drug.

The DA’s office says that Ms Jones is suspected of having killed as many as 60 infants between 1977 and 1982. But proving this has been difficult. Medical records at the San Antonio hospital were accidentally destroyed. Memories have faded; potential witnesses have died.

Apart from the lurid headlines about a baby-killer, the case provides an example of how not to deal with suspicions. According to journalist Peter Elkind, who wrote a book about Genene Jones, her shifts at Bexar County Hospital were called “the Death Shift” because so many children sickened and died when she was working there. Her bosses wanted to get rid of her, even though they had no proof. They found a way: they reshuffled the deck and they lied.

But in the midst of an image makeover for the old charity hospital — it was being renamed Medical Center Hospital — they were unwilling to alert the authorities, fearing bad publicity and lawsuits. So instead of simply firing Jones outright, they replaced all seven LVNs [Licensed Vocational Nurse] in the ICU in March 1982, under the cover of upgrading the unit to an all-RN staff. While they privately celebrated Jones’ departure, hospital officials presented her with a warm letter of recommendation, calling her “loyal, dependable, and trustworthy” and “an asset to the Bexar County Hospital District.” The letter added: “This move in no way reflects on her performance in the unit.”

Jones moved on to a new paediatric clinic in a small town nearby, Kerrville. Children started getting sick there, too, and one died. She was convicted of this death. But even after her dubious behaviour in Kerrville, in the absence of proven wrong-doing, hospital administrators and medical school officials maintained a “judicious silence” to avoid bad publicity and lawsuits.

Jones will probably die in jail, although she has consistently denied killing any children. “I don’t want her stepping out onto free soil,” says the district attorney Nicolas LaHood. “My goal is not to leave one baby behind. In a perfect world, we believe she’d be held accountable for every baby we believe she stole from their families.”

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Two doctors charged with FGM in US-first
by Xavier Symons | May 06, 2017
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tags: female genital mutilation, islam, law, us

In a US first, two Detroit-based Muslim doctors have been charged with carrying out female genital mutilation – a crime under federal law that carries a sentence of up life imprisonment. The doctors, identified by authorities as Jumana Nagarwala and Fakhruddin Attar, allegedly carried out FGM on two young girls at a small private medical clinic in Livonia, Michigan, this February.

Investigators say that Ms. Nagarwala, a 44 year old emergency room doctor, performed the procedure on the girls after hours. Mr. Attar, who works at the clinic, is alleged to have given Mrs. Nagarwala access to the facility. Both Nagarwala and Attar are members of an Indian-Muslim community known as Dawoodi Bohra, a group that is known to practice FGM.

Nagarawala denies the accusations, but authorities say the girls sustained severe injuries including scarring and lacerations to the genitalia. The girls said that they were told by Nagarawala they were receiving treatment for “tummy aches”.

Both Attar and Nagarawala are being held in a county jail after being refused bail at their bond hearings.  

Authorities have been questioning other young girls who belong to the sect to ascertain if the practice is widespread.

“Female genital mutilation constitutes a particularly brutal form of violence against women and girls. It is also a serious federal felony in the United States,” acting US attorney Daniel Lemisch said in a statement. “The practice has no place in modern society and those who perform FGM on minors will be held accountable under federal law.”

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National Academies respond to conflict of interest claims
by Xavier Symons | May 06, 2017
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tags: conflict of interest, us

The National Academies of Sciences, Engineering and Medicine are strengthening their conflict of interest policy after it was revealed that the authors of two major reports failed to disclose industry links. Independent reviews into two studies, one on genetically engineered crops and another on chronic pain management, revealed that authors had substantial connections to industry.

A 2016 review published in Plos One found that 6 out of 20 panel members of a report into genetically engineered crops had "had one or more reportable" financial conflicts of interest, none of which were disclosed in the report.

This followed a 2014 analysis by the Milwaukee Journal Sentinel and MedPage Today of a 2011 study by the Institute of Medicine (now the National Academy of Medicine) on managing chronic pain. The investigation found that nine members of the institute’s 19-expert panel had current or recent connections to companies that manufacture narcotic painkillers.

In response to the damning reviews, The National Academies are revising their conflict-of-interest policy that were last updated in 2003.

Academies spokesmen William Kearney claimed the review was part of a routine process, and that the organisation stood by the reports in question. “We fully stand behind that committee and its report which we are very proud of and our decision to review our procedures had nothing to do with that.”

Yet the changes already made by the review appear to be directly related to the two reports. The Academies said it will now publish disclosures of conflicts of interest (COIs) of the scientists who author academy reports in the documents themselves.

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UK IVF providers trading “free treatment” for egg donation
by Xavier Symons | May 06, 2017
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tags: clinical ethics, commercialization, ivf, uk

The Human Fertility and Embryology Authority (HFEA) has announced an investigation into several UK IVF clinics after damning allegations that women are being pressuring into donating eggs in exchange for free IVF treatment. Journalists from the Daily Mail claim that several clinics are targeting poorer women who are desperate for treatment, in some cases attempting to convince them that donating eggs is like “giving blood”.

Undercover reporters from the Mail say they were encouraged to donate eggs at IVF clinics in London, Hertfordshire and County Durham. In one case, a doctor said a reporter could trade her healthy eggs for cash and use the money to fund her own IVF treatment. In other instances reporters were told by nurses that an egg “isn’t a baby” and that donating gametes was “just like giving blood”.

The HFEA are now threatening the clinics with major regulatory action. “We have already contacted the clinics involved and our inspectors will investigate each allegation”, Sally Cheshire, chair of the HFEA, told the reporters. “If we find poor practice in a clinic, we will take regulatory action.” Health Secretary Jeremy Hunt said the investigation had his full support.

One of the facilities, the London Women’s Clinic North East, rejected the Mail’s accusations. It said that it complied with HFEA guidelines, that the reported conversations between patients and doctors “did not represent the reality of the spirit of the guidance available to patients”, and that patients had to have two independent counselling sessions before donating.

Speaking to the Daily Mail, IVF pioneer Lord Robert Winston said that the women in question were “under duress” and that they “cannot appreciate the consequences of what they’re agreeing to”. “These patients are vulnerable and anxious and likely to be worried about money”, he said.

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Would you plug your brain into the internet? Elon Musk thinks it’s a good idea
by | May 06, 2017
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tags: elon musk, neural lace, neuroscience

More details are emerging abaout Elon Musk’s dream of plugging the human brain into the internet. The Silicon Valley megastar and billionaire, whose other projects include Tesla and Space X, says that his new company Neuralink will be able to help people with severe brain injuries.

The company’s website gives little away, but says that its goal is to develop “ultra high bandwidth brain-machine interfaces to connect humans and computers”. It is hiring a wide of “exceptional engineers and scientists” with talent and drive.

"The first use of the technology will be to repair brain injuries as a result of stroke or cutting out a cancer lesion, where somebody’s fundamentally lost a certain cognitive element," Musk told website Wait But Why . "It could help with people who are quadriplegics or paraplegics by providing a neural shunt from the motor cortex down to where the muscles are activated."

However, Neuralink’s ultimate ambitions are far more ambitious. Its goal is a “whole brain interface”, a network of tiny electrodes linked to your brain which will communicate with the internet without the need for written or spoken language. Although Musk has mused about the idea of neural-lace, he is also considering other technologies.

If this neuro-revolution is successful, it could be the most disruptive technology ever. As Christopher Markou, of the University of Cambridge, writes in The Conversation:

A whole-brain interface would give your brain the ability to communicate wirelessly with the cloud, with computers, and with the brains of anyone who has a similar interface in their head. This flow of information between your brain and the outside world would be so easy it would feel the same as your thoughts do right now.

However, there are gigantic problems to work through, Markou points out:

Medical ethics: How would we test such a device? “This would be elective surgery on (presumably) healthy people for non-medical purposes. Right there, we’re in a completely different ball park, both legally and ethically.”  

Brain security: “If we’ve learned one thing from this era of “smart” everything, it’s that “smart” means exploitable. Whether it’s your fridge, your TVyour car, or your insulin pump, once you connect something to something else you’ve just opened up a means for it to be compromised.”

Regulation: Markou points out that governments and companies would be eager to “to tap into the very biological core of our cognition to use it as a means of thwarting evildoers and selling you stuff”.

Control: what if brain implant became mandatory as a way of extending government control over the whole population?

And Elon Musk is not the only Silicon Valley eminence who is trying to link the brain with computers. Last month Facebook confirmed that it is working on “optical neuro-imaging systems” which would allow people to type directly from their brains at a rate of 100 words a minute. Regina Dugan, head of the Facebook's experimental technologies division, told a conference that people speaking langueages as different as Mandarin and English might be able to share their thoughts directly. 

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Freedom of the mind under threat with new technology
by | May 06, 2017
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tags: neuroethics, neuroscience

Mind-reading in Minority ReportMind-reading in Minority Report    

New human rights laws to prepare for advances in neurotechnology that put the “freedom of the mind” at risk have been proposed by Swiss researchers in the journal Life Sciences, Society and Policy.

The authors suggest four new human rights need to be defined to protect against exploitation and loss of privacy: the right to cognitive liberty, the right to mental privacy, the right to mental integrity and the right to psychological continuity.

Co-author Marcello Ienca, of the University of Basel, says: "The mind is considered to be the last refuge of personal freedom and self-determination, but advances in neural engineering, brain imaging and neurotechnology put the freedom of the mind at risk. Our proposed laws would give people the right to refuse coercive and invasive neurotechnology, protect the privacy of data collected by neurotechnology, and protect the physical and psychological aspects of the mind from damage by the misuse of neurotechnology."

Advances in neurotechnology, such as sophisticated brain imaging and the development of brain-computer interfaces, have led to these technologies moving away from a clinical setting and into the consumer domain. There is a risk that the technology could be misused and create unprecedented threats to personal freedom.

As neurotechnology improves and becomes commonplace, there is a risk that the technology could be hacked, allowing a third-party to “eavesdrop” on someone's mind. In the future, a brain-computer interface used to control consumer technology could put the user at risk of physical and psychological damage caused by a third-party attack on the technology. There are also ethical and legal concerns over the protection of data generated by these devices that need to be considered.

International human rights laws make no specific mention of neuroscience, although advances in biomedicine have become intertwined with laws, such as those concerning human genetic data. Similar to the historical trajectory of the genetic revolution, the authors state that the on-going neurorevolution will force a reconceptualization of human rights laws and even the creation of new ones.

Marcello Ienca adds: "Science-fiction can teach us a lot about the potential threat of technology. Neurotechnology featured in famous stories has in some cases already become a reality, while others are inching ever closer, or exist as military and commercial prototypes. We need to be prepared to deal with the impact these technologies will have on our personal freedom." 

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Searing report on Hungarian home for disabled forces closure
by | May 06, 2017
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tags: deinstitutionalisation, disability, hungary

Entrance to Topház Special Home

A 220-bed facility in Hungary is to be closed after a report by a human rights group revealed terrible conditions. Some residents of Tophaz Special Home, about 30 km from the capital, Budapest, were ill-treated, malnourished and injured. Some were kept in rooms with excrement on the walls.

The Mental Disabilities Advocacy Centre (MDAC), an NGO based in Hungary and the UK, claims in a report that “the institution does not meet the basic needs of its residents in terms of safety, food, health, education and child development. Many of the physical, cognitive and other impairments of residents are potentially consistent with harm caused by long-term institutionalisation and exposure to harsh conditions and treatment.”

"We saw very poor physical conditions on many individuals, including scars and open wounds," said Steven Allen, MDAC campaigns director. "Of particular concern for us is that we saw a number of residents who we believe to be seriously malnourished. The issue is not the carers, the issue is public policy, which invests in these institutions as opposed to helping people live in their own homes."

After the publication of the report, Hungary's Ministry for Human Resources announced that the home would be closed. "What happened at the Tophaz Special Home is shocking and unacceptable," an official said. "The aim of the government is to eliminate the large institutions and place people with disabilities and psychiatric illnesses in a more family-like environment."

The MDAC is campaigning for de-institutionalisation of patients with disabilities. More than 90.000 Hungarians live in residential social care institutions – including elderly, people with mental disabilities, homeless people or addicts., of whom there are  25.000 people with intellectual disabilities and mental health issues.

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Should American doctors participate in executions?
by | May 06, 2017
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tags: capital punishment, medical ethics

The American state of Arkansas executed four prisoners in April. They were given a lethal injection with a three-drug cocktail, a procedure which requires some medical skills. Should doctors take part in such executions?

The consensus amongst medical ethicists is No. The American Medical Association insists that participation violates a fundamental principal of medicine: do no harm. However, many of the 31 states with capital punishment require the presence of a doctor during the execution.

In an unusual intervention in the bitter debate, cardiologist Sandeep Jauhar has written an op-ed in the New York Times arguing that the presence of doctors is ethical.   

The A.M.A.’s position is principled and respects a long history of bioethics in this country. However, it is not practical. States that do not require physician presence typically use other medical professionals, such as emergency medical technicians or paramedics, to insert IV lines and possibly mix the drugs. Barring doctors from executions will only increase the risk that prisoners will unduly suffer ...

Discouraging physician participation, as the American Medical Association does, will not lead to a ban on capital punishment or lethal injection. If anything, it will lead only to the reinstatement of more brutal forms of execution that do not require medical expertise, such as electrocution or death by firing squad. A few states have already decided to use these methods as possible alternatives.

Doctors have a duty to alleviate suffering. No one would object to a doctor’s providing comfort — spiritual or narcotic — to a terminally ill patient at the hour of death. It is not a stretch to think of death-row inmates who have exhausted their appeals as having a terminal disease with 100 percent mortality ...

Doctors can act as a safeguard against this brutality. Participating in executions does not make the doctor the executioner, just as providing comfort care to a terminally ill patient does not make the doctor the bearer of the disease.

It is interesting to note the parallels between the AMA’s rejection of cooperation with prison authorities and the objections of Canadian doctors who say that they will refuse to refer for euthanasia. Even though prisoners are being killed against their will and euthanasia patients are not, both procedures end in death. But the medical consensus is that the former is right and the latter is wrong.

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Recreating the womb for preemies
by | Apr 29, 2017
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tags: artificial wombs, ectogenesis

Researchers have moved a step closer to ectogenesis – brewing babies in an artificial womb. A team at the Center for Fetal Research in Philadelphia have developed a womb-like environment in which premature lambs have already lived at least four weeks before being delivered.

A similar system for babies is at least two years off, but if it is successful, it would give the tiniest newborns a precious few weeks to develop their lungs and other organs.

The fetal lambs grow in a temperature-controlled, near-sterile environment, breathing amniotic fluid as they normally do in the womb, their hearts pumping blood through their umbilical cord into a gas exchange machine outside the bag.

Of the one in ten US births that are premature (younger than 37 weeks gestational age), about 30,000 per year are critically preterm -- younger than 26 weeks. Extreme prematurity is the nation's leading cause of infant mortality and morbidity, accounting for one-third of all infant deaths and one-half of all cases of cerebral palsy attributed to prematurity.

Neonatal care practices have improved overall survival of premature infants and have pushed the limits of viability to 22 to 23 weeks of gestation. At that age an infant weighs below 600 grams -- little more than a pound -- and has a 30 to 50% chance of survival. But this survival comes at a high price in quality of life, with a 90% risk of morbidity, from chronic lung disease or other complications of organ immaturity. Survivors face lifelong disability.

Previous researchers have investigated versions of an artificial placenta in animal models, but pumpless systems have achieved a maximum duration of 60 hours, and the animals have sustained brain damage. The new system, in contrast, has operated up to 670 hours (28 days) with some animals, which remained healthy. The lambs showed normal breathing and swallowing, opened their eyes, grew wool, became more active, and had normal growth, neurological function and organ maturation.

The team does not aim to extend viability to an earlier period than the current mark of 23 weeks. Before that point, limitations of physical size and physiologic functioning would impose unacceptably high risks.

The development of an artificial womb will inevitably be linked to the abortion debate. Reasoning that babies could survive after 20 weeks, some legislators might try to ban abortions after 20 weeks of gestation. And if it became a viable alternative, the meaning of abortion changes. As Peter Singer wrote with Deane Wells in 1985 in The Reproductive Revolution, “Freedom to choose what is to happen to one’s body is one thing; freedom to insist on the death of a being that is capable of living outside of one’s body is another.”

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Counting Down syndrome Americans
by | Apr 29, 2017
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tags: disability, down syndrome

Down syndrome is the leading cause of intellectual disability in the United States. But how many Americans have Down syndrome? There is no clear answer to that question, as the US does not record this information systematically.

Brian Skotko, of Harvard Medical School, and colleagues have done a statistical analysis of Down syndrome Americans in the journal Genetics in Medicine and come up with some very interesting statistics.

The number has quadrupled in the last 60 years because people with DS have a much higher life expectancy.

“We estimate that the number of people with DS living in the United States has grown from 49,923 in 1950 to 206,366 in 2010, which includes 138,019 non-Hispanic whites, 27,141 non-Hispanic blacks, 32,933 Hispanics, 6,747 Asians/Pacific Islanders, and 1,527 American Indians/American Natives. Population prevalence of DS in the United States, as of 2010, was estimated at 6.7 per 10,000 inhabitants (or 1 in 1,499).”

The impact of abortion is substantial:

“In the absence of elective terminations, these predicted numbers would have been 245,981, including 167,992 NHW, 31,836 NHB, 33,620 HIS, 10,716 AS/PI, and 1,817 AI/AN. This corresponds with reductions in population prevalence related to elective terminations, which are estimated to be 19% for all people with DS, 19% for NHW, 16% for NHB, 13% for HIS, 47% for AS/PI, and 16% for AI/AN.”

The impact of abortion is even higher in the UK:

“In the United States, in 1995, there were an estimated 8% fewer people with DS than there would have been without elective terminations, and this value increased to approximately 19% in 2010. In the United Kingdom, the corresponding estimated values were 10 and 26%, respectively.”

Down syndrome people are living much longer. In the US, Down syndrome is no longer a childhood disability:

“According to our model, the mean and median age of death also increased, and even more rapidly, from an estimated 3 and 0 years, respectively, in 1950 to 12 and 2 years in 1970 to 35 and 38 years in 1990 to 48 and 54 years in 2010.”

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Do LGBT parents have a right to a full genetic relationship?
by | Apr 29, 2017
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tags: ivf, lgbt bioethics, parenthood, queer bioethics

The possibility of creating synthetic gametes (eggs from male stem cells, sperm from female stem cells) raises some interesting ethical issues. LGBT couples currently depend upon a third party to contribute opposite-sex gametes. This means that their children will never be fully genetically related and that their relationship depends on outside intervention.

But even for LGBT couples, a genetic relationship with a child is the “cultural gold standard” for reproduction, Timothy Murphy points out in the Journal of Medical Ethics. If this is the case, then LBGT couples should be able to have it as well.

After all, if that kind of relatedness is socioculturally and psychologically important enough to override searching questions about the ethics of fertility medicine in general, then it would seem to be important enough to theorise in relation to same-sex couples' inability to secure it for their families.

Settling for less than the gold standard is inequitable, Murphy argues. In the near future, LGBT couples won’t have to. They will no longer be “inherently infertile”. Rather, they will only be “situationally infertile” in relation to each other – something which can be solved with the help of reproductive technology.

Perhaps LGBT couples, he argues, should even be prioritised in research to help infertile couples conceive and have children:

 it's unclear why—as a matter of moral theory—same-sex couples should have to ‘settle for’ anything less than the same shared genetics in their children as is available to opposite-sex couples. It's plausible in some ways that opposite-sex couples are owed research priority towards securing shared genetics in their children simply as a matter of access and equity and also—more searchingly—as a matter of compensatory justice, for past road blocks imposed against having children. As it often does, biology might stand in the way of human hopes, but then again we won't know for sure unless we test it against our moral ambitions.

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Where did Nazi doctors learn their ethics? From a textbook
by | Apr 29, 2017
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tags: bioethics, medical ethics, nazi doctors

Karl Brandt, one of the defendants in the "doctors' trial"   

German medicine under Hitler resulted in so many horrors – eugenics, human experimentation, forced sterilization, involuntary euthanasia, mass murder – that there is a temptation to say that “Nazi doctors had no ethics”.

However, according to an article in the Annals of Internal Medicine by Florian Bruns and Tessa Chelouche (from Germany and Israel respectively), this was not the case at all. In fact, medical ethics was an important part of the medical curriculum between 1939 and 1945. Nazi officials established lectureships in every medical school in Germany for a subject called “Medical Law and Professional Studies” (MLPS).

There was no lack of ethics. It was just the wrong kind of ethics.

The focus of their study is a Rudolf Ramm, a German general practitioner who became the pre-eminent purveyor of Nazi medical ethics. He was editor-in-chief of the journal of the German Medical Association, Deutsches Ärzteblatt, and published a textbook, Ärztliche Rechts- Standeskunde (Medical Law and Health). The textbook sold out within a year. Ramm did not survive to be a defendant in the famous “doctors trial” in 1947. He was tried and shot by the Soviets in August 1945. His book was banned a few months later.

What did medical students learn during the Nazi era? According to Bruns and Chelouche, it was “the unequal worth of human beings, the moral imperative of preserving a pure Aryan people, the authoritarian role of the physician, the individual's obligation to stay healthy, and the priority of public health over individual-patient care”.

Ramm taught his students that:

Nazism brought the “reinstatement of a high level of professional ethics.” He welcomed the fact that “the profession had been extensively cleansed of politically unreliable elements foreign to our race” (that is, German-Jewish physicians).

Ramm saw 3 distinct dangers facing the German people: “racial miscegenation,” a declining birthrate, and the “growth of inferior elements” in the German population. He traced the origins of these perceived dangers to a “disregard for the laws of nature,” caused by church dogma and socialist ideologies. Ramm denounced any form of health care for “hereditarily inferior” people and asserted that every person in Nazi Germany had a moral duty to stay healthy.

After this brief survey, Bruns and Chelouche argue that today’s doctors must resist the temptation to believe that they are much more ethical than “the bad old days”. A commitment to ethics can wax and wane. In fact, in the Weimar Republic, the ethical standards for human experimentation were “remarkably advanced”. The Nazis did not even bother to repeal them, but simply redefined the subject of experimentation to exclude concentration camp inmates. They conclude by warning that:

It is important to realize that ethical reasoning can be corrupted and that teaching ethics is, in itself, no guarantee of the moral integrity of physicians. The history of bioethics reveals that the professional ethos of physicians is more fragile than we might believe because it depends on the moral zeitgeist and politico-social circumstances, both of which are subject to change ...

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Belgian Catholic psychiatric hospitals ‘adjust’ their view of euthanasia
by | Apr 29, 2017
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tags: belgium, catholic church, euthanasia

One of the last substantial barriers to increasing the number of euthanasia cases for non-terminally-ill psychiatric patients in Belgium seems to have crumbled.

A religious order in the Catholic Church, the Brothers of Charity, is responsible for a large proportion of beds for psychiatric patients in Belgium – about 5,000 of them. The international head of the order, Brother René Stockman, is a Belgian who has been one of the leading opponents of euthanasia in recent years.

Nonetheless, in a surprise move this week, the board controlling the institutions of the Brothers of Charity announced that from now on, it will allow euthanasia to take place in their psychiatric hospitals.

In a statement posted on their website the Brothers of Charity explain the policy shift. “We take seriously unbearable and hopeless suffering and patients’ request for euthanasia. On the other hand, we do want to protect lives and ensure that euthanasia is performed only if there is no more possibility to provide a reasonable perspective to treat the patient.”

Euthanasia for psychiatric patients has already happened dozens of times in Belgium. But from now on it will probably be easier for people suffering from schizophrenia, personality
disorders, depression, autism, or loneliness to access it. In fact, it will be hard to find an institution in Belgium where euthanasia is not being offered as an option.

Brother Stockman was stunned. “We deplore this new vision,” he told the media.

Nursing homes and hospitals opposing euthanasia have been under even more pressure after a court fined a Catholic nursing home a total of €6,000 last year for blocking a resident from accessing euthanasia.

However, Stockman felt that this was not an open and shut case. “I am confident that we have the right to refuse euthanasia,” Stockman told De Morgen. “We want to take seriously the needs of the patients, but the inviolability of life is for us an absolute. We cannot accept that euthanasia is carried out within the walls of our institutions. “

The leading figure in Belgian euthanasia, Dr Wim Distelmans, was delighted. Fifteen years after legalisation, he wrote in a newspaper op-ed, the Brothers of Charity have finally admitted that they had excluded the democratically approved policy of euthanasia from their institutions and forbidden doctors to follow their conscience and professional judgement.

Rubbing it in further, a member of the Belgian Parliament, Jean-Jacques De Gucht, summed up the situation: “the last relics of the paternalism of the shepherd have been replaced by individual self-determination”.

The chairman of the board, Raf De Rycke, an economist who has worked with the Brothers of Charity for years, denied that the ethos of their hospitals had changed “We have not made a 180 degree turn,” he told De Morgen newspaper. “It is not that we used to be against euthanasia and now suddenly are for it. This is consistent with our existing criteria. We are making both possible routes for our patients: both a pro-life perspective and euthanasia.”

Although this seems odd for a Catholic group, especially when the Pope has been outspoken in denouncing euthanasia, De Rycke believes that the inspiration of the Belgian Brothers of Charity fundamentally remains the same. “We start from the same basic values: the inviolability of life is an important foundation, but for us it is not absolute. This is where we are on a different wavelength from Rome.”

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Euthanasia is a ‘sideshow’ in end-of-life care, says leading US bioethicist
by | Apr 27, 2017
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tags: assisted suicide, euthanasia, ezekiel emanuel

The Medical Journal of Australia has just published a commissioned paper on euthanasia and assisted suicide by one of America’s leading bioethicists, Dr Ezekiel Emanuel. Emanuel is not a palaeo-conservative. A brother of Obama’s former chief-of-staff, Rahm Emanuel, a fellow at the Center for American Progress, and a professor at the University of Pennsylvania, his liberal credentials are impeccable. However, he regards euthanasia as a “side-show” in the vital discussion of end-of-life care.

Emanuel cites the data from places where euthanasia and physician-assisted suicide (PAS) are legal and notes that premature death by the methods employed are rare. While rarity is a matter of degree and interpretation, it is true to say that the vast majority of people do not seek to access premature death. Emanuel concludes:

"These data mean that the claim that legalising euthanasia and PAS will help solve the problem of poor end-of-life care is erroneous. Euthanasia and PAS do not solve the problem of inadequate symptom management or improving palliative care. These interventions are for the 1% not the 99% of dying patients. We still need to deal with the problem that confronts most dying patients: how to get optimal symptom relief, and how to avoid the hospital and stay at home in the final weeks.

“Legalising euthanasia and PAS is really a sideshow in end-of-life care — championed by the few for the few, extensively covered by the media, but not targeted to improve the care for most dying patients who still suffer."

It's not about pain

The public perception of the justification for E & AS seems to be largely focussed on pain. The word “suffering” is extends to “existential”' issues. But existential suffering - like pain itself, is well managed by good care. In any case, it remains the case that the drivers of euthanasia argument and understanding in the community is about a supposedly compassionate response to pain experienced by people with difficult and demanding prognoses.

Emanuel debunks this myth by reference to the data:

"Second, pain is not the primary reason why people seek euthanasia or PAS. It is commonly thought that patients in excruciating and unremitting pain would want these interventions. Many healthy people believe that pain would be the reason why they may want them; however, evidence suggests otherwise. Patients who request and receive euthanasia or PAS infrequently experience pain; similarly, few patients in pain actually want euthanasia or PAS.

Two decades ago, research with patients who had cancer or HIV showed that those who were interested in euthanasia or PAS were not those experiencing pain. This has been confirmed multiple times; for instance, the data from the state of Oregon in the US, which has followed patients who have requested and used PAS for 17 years now, show that fewer than 33% of patients are experiencing — or fearing — inadequate pain control. Even in Australia, when for a brief moment seven patients were given euthanasia in the Northern Territory, none had uncontrolled pain.

"If not pain, then what motivates patients to request euthanasia and PAS? Depression, hopelessness, being tired of life, loss of control and loss of dignity. These reasons are psychological — they are clearly not physical pain — and are not relieved by increasing the dose of morphine, but by antidepressants and therapy. In the states of Oregon and Washington, the reasons for wanting PAS were: 90% of patients reported loss of autonomy, 90% were less able to engage in activities that make life enjoyable and 70% declared loss of dignity — depression and hopelessness are not listed and are not included in the reporting list. Likewise, in the Netherlands, the main legal requirement is “extreme physical or mental suffering,” and patients’ reasons are classified in this manner, making it hard to know whether the reasons are physical symptoms of depression.

However, when researchers from the Netherlands — who were convinced that the main rationale was pain — interviewed patients who requested euthanasia, they found that few of the ones using euthanasia were experiencing pain, but most were depressed".

He moves on to discuss psychological suffering which, generally speaking, would include a great deal of that which is claimed to be existential:

"The importance of psychological suffering as patients’ rationale for requesting euthanasia and PAS indicates that these interventions are less like palliative care and more like traditional suicide condoned and assisted by the medical community. The main drivers of traditional suicide are psychological problems. Despite the importance of psychological suffering as the main motivator, few physicians in the jurisdictions where euthanasia and PAS are legal receive psychiatric consultation.

Indeed, in the states of Oregon and Washington, less than 4% of patients who had PAS had a psychiatric consultation. In Belgium, where an independent physician needs to be consulted for non-terminal cases, in 42–78% of cases that physician is a psychiatrist. Since psychological reasons dominate, one would think that requiring psychiatric evaluation would be a reasonable safeguard before providing euthanasia or PAS. Therefore, we need to think very differently about what drives people to want euthanasia. The picture most people have of patients who are writhing in uncontrolled pain despite morphine is simply wrong." (emphasis added)

A painless exit?

The marketing and sloganeering of the pro euthanasia and assisted suicide brigade would have us believe that the provision of a premature death by way of a lethal dose is “dignified” because it is quick and painless. The likes of Exit International and Philip Nitschke going so far as to market products and methods under the slogan, the “peaceful pill”. This is false and ignores the reality, as Emanuel points out:

"Third, many people believe euthanasia and PAS are flawless, quick and painless. This belief is common but mistaken. No medical procedure — even simple ones like blood draws — is flawless; every medical procedure has problems and complications. Euthanasia and PAS are no exceptions.

According to a study in the Netherlands from 2000, 5.5% of all cases of euthanasia and PAS had a technical problem and 3.7% had a complication. An additional 6.9% of cases had problems with completing euthanasia or PAS. Technical problems, including difficulty finding a vein and administering oral medications, occurred in 4.5% of euthanasia cases and in 9.8% of PAS cases. Moreover, 3.7% of euthanasia cases and 8.8% of PAS cases had complications, such as nausea, vomiting and muscle spasms. Overall, an additional 1.1% of patients who had euthanasia or PAS did not die but awoke from coma. The data suggest that the common view of euthanasia and PAS as quick, flawless, and painless ways to die is unrealistic." (emphasis added)

In conclusion, Emanuel questions the entire thrust towards patient killing and patient suicide:

"When considering this evidence, the case for legalising euthanasia and PAS looks less compelling. They will not improve the care of many dying patients, they are not helping people in pain and enduring inadequately treated physical symptoms, and are far from quick and flawless. What is then the great impetus to legalise interventions to end lives for a small minority of patients who are depressed, worried about losing autonomy and being tired of life?

"We should end the focus on the media frenzy about euthanasia and PAS as if it were the panacea to improving end-of-life care. Instead, we need to focus on improving the care of most of the patients who are dying and need optimal symptom management at home."

If Emanuel is right that we should “end the focus on the media frenzy” then it would seem to be an imperative that the media, in turn, report on his observations. Yet, in Australia, this paper was noted only once in the daily papers and only twice in brief news articles on line.

Paul Russell is director of HOPE: preventing euthanasia & assisted suicide, which is based in Australia. This article has been edited and republished from his blog with permission. 

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Swedish midwife opposed to abortion appeals to European Court of Human Rights
by | Apr 26, 2017
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tags: conscience, conscientious objection, sweden

Ellinor Grimmark speaking to the press    

Swedish midwife Ellinor Grimmark has decided to appeal to the European Court of Human Rights over Sweden’s hard line on conscientious objection.

The Swedish Appeals Court decided earlier this month that the government can force medical professionals to perform and cooperate in abortions, or else be forced out of their profession. Because the ruling in Grimmark v. Landstinget i Jönköpings Län appears to contradict international law protecting conscientious objection, Grimmark wants to appeal to Strasbourg.

Three different medical clinics denied her employment because she will not assist with abortions. In Sweden, midwives are essentially nurses who specialize in pregnancy and child birth and seldom do abortions. It would have been relatively easy to find a way to accommodate Grimmark’s preferences.

However, the clinics’ intransigence has meant that Grimmark and her family have had to move to neighbouring Norway. “In the beginning, I was hoping to stay in Sweden,” she told Fox News. “But we have now made Norway home. I have a job here where they are not concerned with my beliefs.”

In November 2015, a district court found that her right to freedom of conscience had not been violated by refusing to employ her. That court even required her to pay the local government’s legal costs of 100,000 Euros (US$106,000).

“Participation in abortions should not be a requirement for employment as a medical professional. In accordance with international law, the court should have protected Ellinor’s fundamental right to freedom of conscience,” said Robert Clarke, of the Alliance Defending Freedom (ADF International), an American group which is helping with Grimmark’s case.

 “The desire to protect life is what leads many midwives and nurses to enter the medical profession in the first place,” Clarke said. “Instead of forcing desperately needed midwives out of their profession, governments should safeguard the moral convictions of medical staff. The Parliamentary Assembly of the Council of Europe has affirmed that ‘no person, hospital or institution shall be coerced, held liable, or discriminated against in any manner because of a refusal to perform, accommodate, assist, or submit to an abortion.’ As a member state, Sweden must be held to its obligation to respect this freedom.”

The shut-up-or-leave approach to conscientious objection in healthcare issues is widely accepted in Sweden. In a recent article in the Journal of Medical Ethics, bioethicist Christian Munthe, of the University of Gothenburg, explains that “No legal right to conscientious refusal for any profession or class of professional tasks exists in Sweden, regardless of the religious or moral background of the objection”. Swedes feel a strong commitment to civic duties and non-discrimination.

However, the “Swedish solution” may be eroding, for two reasons, neither of them related to Grimmark’s complaint.

The first is political. The general council of the Swedish Medical Association recently agreed to work toward a legal right to conscientious refusal to refer patients to clinics offering alternative medicine. The doctors feel that these upstarts should not be included in the healthcare system.

The second is the very real possibility that Sweden may someday legalise euthanasia or assisted suicide. The medical profession opposes this unless the law includes a provision for conscientious objection. So paradoxically, as Munthe points out, at the moment the Swedish solution to conscientious objection both supports abortion and blocks euthanasia.

Michael Cook is editor of MercatorNet. 

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Transplant ethics for the 21st Century
by Xavier Symons | Apr 22, 2017
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tags: transplant ethics, transplant surgery, uterus transplant

Transplant surgery has developed rapidly since the first successful heart transplants in the late 1960s. Newly developed techniques includes uterus, penis and larynx transplantations, and some researchers may shortly attempt to transplant testicle, ovary and fallopian tubes.

In a new article in the Journal of Medical Ethics, bioethicists Arthur Caplan and Duncan Purves explore the novel ethical questions that arise from this “quiet revolution” in the world of human organ transplantation.

The authors note that there are different ethical considerations for transplantations that are not concerned with extending life (as, for example, a heart or lung transplant is typically concerned with). These new procedures, they argue, require us to ‘rethink’ the traditional risk-benefit analysis used to evaluate the ethics of transplantation:

"the shift away from saving lives to making them better requires a shift in the ethical thinking that has long formed the moral rationale for organ transplantation. Doctors, patients, regulators, donors and payers need to rethink the risk and benefit ratio represented by trade-offs between saving life, extending life and risking the loss of life due to the quality of life-enhancing transplant surgery."

Caplan and Purves consider various complexities surrounding ‘life-enhancement’ transplantation, such as whether we can really measure quality of life against quantity of life, or whether the risk of “losing everything” in death always outweighs the potential gain of life enhancement. They argue that doctors and patients must carefully scrutinised the ostensible advantages of such procedures.

"novel forms of transplantation carry with them all of the risks of reconstructive surgery (eg, death from anaesthesia and post-surgery complications such as infection), but they also increase the risk of infection because of their reliance on immunosuppressives, which are often accompanied by unique risks (eg, significant increase in long-term cancer risk and organ failure). Because the threat to quantity of life is so great in the transplant context, special attention must be paid to ensure that the expected improvements in quality of life are sufficient to outweigh it."
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Euthanasia rates rise by 10% in the Netherlands
by Xavier Symons | Apr 22, 2017
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tags: assisted dying, euthanasia, netherlands

Deaths by euthanasia increased 10% in the Netherlands in 2016, according to a new report published by the country’s Regional Euthanasia Review Committees (RTE).

The report states that in 2016, 6091 patients were euthanised, up from 5516 in 2015.

Most of the cases of euthanasia involved people with cancer, serious heart or lung problems or diseases of the nervous system such as ALS.

There were 32 more cases of assisted suicide involving people with dementia, most of whom were in the early stages of the disease. In addition, there were 60 cases involving people with severe psychiatric problems, a rise of four on 2015.

The committee reported that in 10 of the cases the “executive doctor” did not comply with due diligence, and in some these cases, there were concerns that the doctor involved did fulfill the requirements of informed consent for the procedure.

Many healthcare analysts doubt the reliability of the committee's review process, and some suggest that complaints should be made directly to the Supreme Court.

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Indian state moves toward ‘two child policy’
by Xavier Symons | Apr 22, 2017
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tags: abortion, india, one-child policy, population control

The Indian state of Assam may enact a strict 'two child policy' in response to concerns about rapid population growth in the region.

Regional authorities are seeking public feedback and recommendations on draft population policy that would prevent citizens of the region with more than two children from applying for particular civil service and government jobs.

Assam Health Minister Himanta Biswa Sarma was reported as saying that, “Persons will not be eligible to apply for government jobs, and for that matter any kind of government service including that of becoming members of the panchayat and civic bodies.” “Assam is facing a dangerous population explosion, and this is one of the several measures we have proposed in the draft population policy”, he said.

According to census data quoted in a preamble to the draft policy, there was a population increase of close to 5 million in the period 2001-2011, taking the region’s total population to 31.2 million at the time of the census.

Some commentators believe that the proposed policy will fail to address deeper economic issues facing the region of Assam.

“Assam’s poor don’t need population control programs”, wrote Jonathan Abbamonte of the Population Research Institute. “They need roads and bridges to get their agricultural goods to market, access to secure housing, and better educational opportunities to help lift them out of poverty”, Abbamonte argued.

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Euthanised organ donors could dramatically shorten waitlists in Belgium, say doctors
by | Apr 22, 2017
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tags: belgium, euthanasia, organ donor euthanasia


Several Belgian physicians argue in a recent research letter in JAMA that encouraging the practice of organ donation after euthanasia will help reduce the waitlists for organ donation.

“In 2015, 1288 people were on the Belgian organ transplantation waiting list. An estimated maximum of 10.1% of all patients undergoing euthanasia could potentially donate at least 1 organ, with 684 organs potentially available for donation. In 2015, 260 deceased donor kidneys were donated; if 400 kidneys were donated by patients undergoing euthanasia, the potential number of kidneys available for donation could more than double.”

However, they acknowledge that enthusiasm for this novel method needs to be tempered by an awareness of some of its limitations. Patients who will be euthanised need to agree to donate their organs and they have to die in a hospital setting. Often people prefer to die at home.

At the moment, organ donation after euthanasia, they say, is only allowed in Belgium and the Netherland and is still relatively uncommon. There have been reports that it may be happening in Canada as well.

The article does not take into account trends in the type of patient who undergoes euthanasia. Many patients were excluded from their calculation because they were too old or were suffering from diseases like cancer which are more common amongst the elderly. But if euthanasia become common for psychiatric conditions, younger patients who are physically healthier might expand the pool of organs even further. 

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‘Fake news’ invades bioethics
by | Apr 22, 2017
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tags: fake news, ivf, media

It had to happen sooner or later: fake news about bioethics. Fake, not in the sense of exaggerated, or slanted, or partial, or badly researched, but authentically fake, like the Rolex watches you can buy for $10 in Bangkok.

Several major online newspapers in the US and UK published a shocking story about a couple in Jackson, Mississippi, who sought IVF treatment and learned that they actually were twins separated at birth.

The doctor who broke the news described how the wife pleaded with him to admit he was joking, but he added: “I wish that I was, but they had to know the truth.” ...

The unnamed doctor added: “The husband said that a lot of people remarked on the fact they shared the same birthdays and looked similar to each other, but he said it was just a funny coincidence and that the couple were definitely not related.”

The pair are now said to be re-considering their future together.

The sensational news was based on an article in a publication called the Mississippi Herald, which has no contact details or physical address, and had been set up only a few days before.

It was, according to Snopes, the internet fact-checker, “set up for no other ostensible purpose than to spread fictitious stories. And a number of online ‘news’ publications ran with one of their fictitious stories without having made the slightest attempt to verify it, based on nothing more than one dubious source that should have raised a plethora of red flags in a real newsroom.”

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Will Richard Branson erase the stigma of dyslexia?
by | Apr 22, 2017
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tags: commercialization, commodification, fake news, sperm donation


British billionaire entrepreneur Richard Branson is either a practical joker or a quirky eugenicist. On March 31 he announced the creation of the world’s first dyslexia-only sperm bank.

In the past, some sperm banks in the UK rejected dyslexic donors because they might be carriers of “common genetic diseases or malformations”. Ironically, they were reproached for being “eugenicist”. But Branson says on his personal blog that

“this is absurd when you think that some of the most successful people in the world are dyslexic. Rather than being seen as a weakness, dyslexia should be seen as a strength ... Dyslexia has been a massive help for me personally; it makes me think creatively and laterally, two major factors that helped me create Virgin and build a global brand ...Dyslexia is a different way of thinking, not a disadvantage and it shouldn’t stop young people from achieving success and striving to make their dreams a reality.”

The notion has the air of prank, but Branson says that he will launch “the world’s first dyslexic sperm bank” in London on May 2. A website already exists,, which also promises great things on May 2.

As Stat noted, Branson’s holding company, the Virgin Group, has a habit of making announcements on April Fool’s Day, like left-handed telephones, a trip into an active volcano, and using trained ferrets to lay underground cables.

Watch this space. 

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Govt committee backs ban on sex selection in Australia
by | Apr 21, 2017
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tags: australia, family balancing, ivf, sex selection

An Australian government body has just released its first major update of guidelines for assisted reproductive technology in 10 years. The most controversial decision by the Australian Health Ethics Committee of the National Health and Medical Research Council was to continue a ban on sex-selection by IVF clinics. It says that “AHEC does not endorse, or wish to perpetuate, gender stereotyping or cultural or personal biases based on biological sex”. Therefor the current policy will remain in place: “admission to life should not be conditional upon a child being a particular sex”.

It appears that almost no one in the IVF industry is happy with this outcome. Doctors claim that there is considerable demand from couples for sex-selection for “family balancing”. Associate Professor Mark Bowman, of Genea, a major chain of clinics, responded that “individual Australians’ personal freedom to make informed reproductive choices is arbitrarily restricted.”

The vice president of the Fertility Society of Australia, Prof Michael Chapman, told The Guardian Australia that every week he had a patient who expressed a strong desire to “gender balance” their family. Some were so distressed they required psychiatric care.

“The conservatives ultimately won,” Chapman said. “There is a significant minority of the Australian population, particularly women in their reproductive years, who would accept the concept of gender balancing. Those couples will be continued to be forced to go overseas to clinics that are not as of high standard as those in Australia.”

“We will be seeking legal advice,” said fertility specialist David Molloy, a former head of the Australian Medical Association in Queensland. “This is a farce and the council has left doctors unsure of their rights.” Since sex-selection is not actually illegal in his state, he says that he will defy the guidelines and offer sex-selection for family balancing.

However, one bioethicist contended that selection on the basis of sex was troubling because it assumes that

“there are two types of children, boys and girls, they have essentially different personalities and traits and offer significantly different parental experiences. Allowing sex selection for social reasons would send out a message that it is acceptable to create children to fit preconceived binary gender roles.”

Tereza Hendl, of the University of Sydney, said that sex selection would ultimately curb a child’s options for behaving in gender nonconforming ways. 

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Michael Cook
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