November
18
 

Nitschke designs new euthanasia machine with detachable coffin

Australia’s best-known euthanasia activist, Dr Philip Nitschke, is back in the news with another machine for committing suicide, the Sarco capsule.

The machine will allow anyone who has the access key to end their life by simply pressing a button. Developed in the Netherlands by Nitschke and an engineer, the machine can be 3D printed and assembled in any location. Access to the Sarco capsule will be by an on-line mental questionnaire which will provide a four-digit access code.

When the person lies in the capsule, he can activate it and liquid nitrogen will rapidly drop the oxygen level, leading to death a few minutes.

The novel feature is that the capsule can be detached from the Sarco machine and used as a sleek and shiny coffin. The machine base can be re-used.

Design criteria for the Sarco will be free, made open-source, and placed on the internet. Nitschke says that the world is now one step closer to the goal where any rational person can electively end their life in a peaceful and reliable way at the time of their choosing. “Sarco does not use any restricted drugs, or require any special expertise such as the insertion of an intravenous needle. Anyone who can pass the entry test, can enter the machine and legally end their life”. 



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November
18
 

NEJM debates repairing human germlines

With the rapid advance in gene-editing technology, the time has come to consider how to ethical trials, according to an editorial in the New England Journal of Medicine. Bryan Cwik, a philosopher at Portland State University, in Oregon, zeroes in on some unprecedented difficulties in designing trials of modifying the human germline.

Cwik argues that “intergenerational monitoring” will be needed, not just of the first generation of modified children, but of their children and grandchildren. There could be subtle effects which emerge only after two or three generations. He points out that:

Monitoring for effects of gene editing will require consent and participation from multiple generations of descendants of the original participants. Studies will therefore require researchers to have access to key medical data for entire families over several decades.

But is this compatible with the autonomy of the research subjects? How can unborn grandchildren give consent to a lifetime of monitoring, with blood tests, physical examinations and collection of genetic material. Some descendants may not be aware that their forebears were genetically modified and notifying them may be socially and psychologically distressing. Cwik concludes:

... protection of the dignity, welfare, and privacy of research participants is of the utmost importance, and no amount of therapeutic potential can justify proceeding with human experiments until that protection is secured.

In another editorial in the same issue of the NEJM, Harvard stem cell scientist George Church jeers at such arguments.

... some critics fret about the slippery slope of human enhancement and the impossibility of obtaining consent from future generations. Doing nothing merely for fear of unknown risks is itself risky — greatly restricting the advance of medicine... We already embrace many enhancements inherited over multiple generations — generally without consulting future grandchildren — for example, education, homes, and extinction of pathogens through the use of vaccinations. The issue for many critics lies not in enhancement relative to our ancestors, but rather relative to one another.



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November
18
 

Jehovah Witness woman in Quebec freely chose not to have transfusion and paid with her life

Eloise Dupuis    

A woman was within her rights to refuse a blood transfusion even if she risked dying, said the Quebec coroner this week.

Eloise Dupuis, 27, died in Quebec on October 12, 2016 of multiple organ failure and loss of blood after a Caesarean section. A Jehovah's Witness, she insisted that she did not want to receive a blood transfusion. The coroner, Luc Malouin, said that she had made a free and fully informed choice.

Jehovah’s Witnesses believe that blood transfusions are forbidden by the Bible. Another Quebec woman of the same persuasion, 46-year-old Mirlande Cadet, died a few days earlier, on October 3, after complications in childbirth.

After studying the medical records, the coroner was convinced on Dupuis’s determination. She had said on five separate occasions that she did not want a transfusion. In studying her medical records, Malouin found five occasions when Dupuis told doctors she did not want a transfusion. “Refusal of transfusion even if death is the result,” one note said on the evening after she gave birth to her son Liam. After she was no longer able to give consent, her relatives, also Jehovah’s Witnesses, supported her decision.

The coroner noted that in Quebec, once deeply Catholic but now profoundly secular, religious convictions may be regarded with scepticism or even hostility, but people still have the right to live by them:

“At a time when a majority of Quebecers do not actively practise any religion, this notion of respecting religious rules seems to come from a different era. There was a time in Quebec when such rules were very present and governed the lives of all. It is no longer the situation today, but the choice to adhere or not to religious rules must be respected.”

And the law in Quebec is clear: adults of sound mind have a right to refuse medical treatment. 



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November
18
 

Should Americans excuse FGM as a minority cultural practice?

Dr Jumana Nagarwala

Eight people have been charged with involvement in female genital mutilation in Michigan – the first case in the United States. Dr Jumana Nagarwala is the central figure because she performed the procedure – nicking the clitoral hood of two Minnesota girls who were brought to her by their parents.

All of the defendants are members of an Indian Muslim sect called Dawoodi Bohra.

In a post on The Hastings Center blog, two Muslim physicians from the University of Chicago attempt the difficult task of calling for a compromise on this incendiary issue. They call for more understanding of ancient traditions.

Informed discussion can only take place when we use language that does not marginalize and pre-judge, that opens dialogue rather than obstructs it. Thus, like others before us, we believe that the term female genital mutilation, or FGM, should be discarded in favor of more neutral terminology. No doctor willfully seeks to mutilate. As we ask others to reexamine their rituals, we should reevaluate our use of language. For the terminology we use might reveal our unconscious biases, and a neutral stance is needed to allow the voices of those who engage in the practice to be heard.

Next, we require an accurate understanding of the procedures and data about their harms. To have a productive conversation about harm-reduction we need to understand all of the harms involved, both when the procedure is performed and when it is not. Thus, the medical data on harms and complications post-FGC; information about the social and psychological harms that accrue when these procedures take place and, importantly, when they are not performed; and anthropological data about the significance of these procedures in their cultural contexts all need to be brought to the dialogue. We need to objectively and critically examine both what we do and do not know before making moral assessments and delineating a path forward.

The two Muslim bioethicists, Aasim I. Padela and Rosie Duivenbode, claim that Dawoodi Bohra practices a form of gender equity, with the boys being circumcised and the girls being “nicked”. 



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November
18
 

Social egg freezing adverts are often sheer puffery, claims bioethicist

Social egg freezing has become another money-spinner for fertility clinics as women try to reconcile their career ambitions and their desire to have children. In 2014, Facebook and Apple announced that they would subsidise their female employees’ elective — or ‘social’ — use of egg freezing. Since then other tech companies have jumped in the bandwagon, including eBay, Google, Uber, Time Warner and Intel.

But are fertility clinics advertising their product responsibly? According to a bioethicist who did a content analysis of internet advertising, the answer is No. Writing in The New Bioethics, Christopher Barbey, of the Center for Bioethics at the University of Minnesota, reports that “many fertility clinics engage in biased advertising — i.e. they advertise the service persuasively, not informatively, emphasising indirect benefits while minimising risks and the low chance of successfully bringing a child to term.”

Barbey studied advertisements of clinics servicing the San Francisco Bay area. He found that much of the advertising was persuasive rather than informative. Statements like “Everything changes. Life moves quickly. The future is unpredictable” or  “Your reproductive potential will never be as good as it is today” fail to give this faintly alarming information proper context. As well, they fail to alert women to the fact that 94% of client end up never using their frozen oocytes.

These clinics utilise puffery — i.e. linking, through imagery, suggestive language, and the use of unsubstantiated claims, the utilisation of their service to traits that potential clients may desire. They also couple undesirable traits with the consumer’s condition prior to using the service. They use language that appears designed to potentiate any sense of anxiety a woman may hold about age-related fertility decline. This anxiety may engender a potentially outsized sense of need for egg freezing in the minds of potential clients. Clinics are also shy about including straightforward information about the success rates of the procedure, preferring to focus on the speculative indirect benefits of utilising the technology. 



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November
17
 

Swiss assisted suicide rates increased by 30% in 2015

The rates of assisted suicide in Switzerland increased by 30% in 2015, bringing it close to eclipsing suicide as a cause of death.

965 Swiss residents (426 male and 539 female) died by assisted suicide in Switzerland in 2015, up from 742 deaths (320 male and 422 female) in 2014. Of the 965 deaths by assisted suicide, 822 were of individuals 65 years or older.

1071 swiss residents (792 men and 279 women) committed suicide in Switzerland in 2015, an increase of 43 deaths on 2014.  

Importantly the statistics do not include those who have travelled from another country to end their life in Switzerland.

Felix Gutzwiller, emeritus professor of preventative medicine at the University of Zurich, said that the increase in deaths had to do with an ageing population, and with the negative social attitudes towards unassisted suicide. "It is the negative attitudes to suicide that drives up the number of assisted suicides," he told Tages-Anzeiger.



This article is published by Xavier Symons and BioEdge.org 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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November
17
 

Euthanasia debate halted in Victoria after MP rushed to hospital

The bid to introduce euthanasia in Victoria is taking its toll on politicians, with one parliamentarian being rushed to hospital after a marathon 26-hour sitting.

Daniel Mulino, who staunchly opposed the bill, was taken to hospital in an ambulance just before 10:30am on Friday. Mr Mulino had suffered an “emergency” in his office, though colleagues later confirmed that he had stabilised: “I have had an update from Mr Mulino personally, and we can say he is all good”, said Labor MP Jaclyn Symes.

Parliament was adjourned at 11:30am, and will reconvene next Tuesday.

MPs had debated just nine of a 140-clause amended bill by the end of this week’s session.

The fate of the bill is in the hands of just two MPs, Liberal’s Bruce Atkinson and Simon Ramsay, who have demanded extensive amendments before they would consider voting for the bill.

Under the first set of amendments to be considered, patients must be a Victorian resident for at least a year, the coroner will be notified and assisted dying will be mentioned on the death certificate. The government has also said it will tighten the entry requirement for patients from 12 months to 6 months maximum life-expectancy.

A bill to legalise euthanasia in New South Wales was defeated in the Legislative Council by one vote on Thursday evening.  



This article is published by Xavier Symons and BioEdge.org 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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November
11
 

Demand for euthanasia surges in the Netherlands

Euthanasia is becoming so popular in the Netherlands that the country’s only dedicated death clinic cannot keep up with the demand. Steven Pleiter, director of the Levenseindekliniek in Amsterdam, told the Guardian that he needs to double the number of doctors. He is running a high-profile advertising campaign to recruit staff. “Doctors at the clinic euthanised 32 patients in 2012, but it will help 720 people to die by the end of this year,” says the Guardian.

This year about 7,000 people will die by euthanasia – up 67% from five years ago. Euthanasia has become normalised.

“If there was any taboo, it has gone. There is a generation coming up, the postwar generation, which is now coming to the life stage in which they will die, and this generation has a far more clear and expressed opinion about how to shape their own life end. I expect far more growth in the years to come ...

“We ask the doctors to work eight to 16 hours a week for this organisation. A full-time job involved in the death of people is probably a bit too much, and ‘probably’ is a euphemism.”

Professor Theo Boer, who served on the Dutch euthanasia review committee between 2005 and 2014, has become a prominent critic of euthanasia.

“Starting from 2007, the numbers increased suddenly. It was as if the Dutch people needed to get used to the idea of an organised death. I know lots of people who now say that there is only one way they want to die and that’s through injection. It is getting too normal ...

“There is no dispute about the good intentions of the people at the end of life clinic. [But] they may have become too used to doing euthanasia. Yes, they have expertise but they are too experienced. You should never get used to helping someone die.”



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November
11
 

Scientists grow skin to save Syrian boy’s life

Good news about stem cells! A group of scientists in Italy have managed to treat a boy suffering from a life-threatening skin condition -- by growing him new skin in a laboratory.

The boy, a syrian refugee living in Germany, suffered from a severe form of junctional epidermolysis bullosa, a genetic disease that causes the skin to become fragile and blister. By the time he received specialist medical attention, the boy had lost almost all his skin (specifically, the epidermal layer of the skin), save a small patch on his leg and head. Doctors in Germany were unable to treat him, and assistance was sought from Italian scientists who had pioneered a technique to regenerate healthy skin in the laboratory – but had never attempted to use it for such an ambitious case.

The research team, led by Michele De Luca at the University of Modena, grew genetically modified skin in a laboratory that could replace the lost epidermal tissue for the boy. The replacement skin was based on a sample from the patient’s remaining healthy skin, which scientists genetically modified it using a virus to deliver a healthy version of the problematic gene.

The team grew enough skin to cover almost the entire body of the boy. During two operations in autumn 2015, the new epidermis was attached like a patchwork quilt, covering almost his entire body. Within a month, the graft had integrated into the lower layers of skin. The genetically modified cells in the graft include specialised skin stem cells that meant once the transplant was integrated it was able to renew and sustain the healthy skin.

“Once you have regenerated the epidermis, the stem cells keep making the renewal of the epidermis as in a normal [healthy person],” said De Luca. “All the data we have … are telling us that this is going to be a stable situation.”

Two years on the boy is doing well, his doctors said. His skin is healthy, he doesn’t need to take medication or use ointments, he is back at school, plays football and when he gets a cut it heals normally.



This article is published by Xavier Symons and BioEdge.org 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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November
11
 

Let death be didactic

The old Jewish cemetery, Prague / National Geographic

The burning issues of bioethics are euthanasia, abortion, the reproductive revolution, organ donation and brain death, animal welfare and the like. But other topics, although they also deal with respect for the body and death, are almost completely ignored. Cremation, for instance, is a burning issue, but not one which often appears in bioethics journals.

A recent article in The New Bioethics by Toni C. Saad, however, questions increasing acceptance of the practice of cremation on philosophical grounds.

Christianity has deprecated cremation as a symbolic denial of the resurrection of the body. The decline of fervour in traditionally Christian societies probably explains much of the increasing popularity of cremation. In the UK cremation has become the most popular method of disposing of bodies. But Saad believes that cremation is less than ideal for other, non-theological, reasons.

Cemeteries are places of collective memory. “Excluding death from a local community deprives it of a shared memory of those who were once part of it and who made it what it is now. This leads to ... collective amnesia,” he writes. For instance, a cemetery for slaves was recently discovered under a parking lot in Portsmouth, New Hampshire, in the United States. It presents an uncomfortable reminder of historical injustices, but without the cemetery, locals would be in danger of forgetting a dark corner of their past.  

Furthermore, cemeteries force us to confront death in an era when it is being marginalised:

The nearly dead are excluded from the living before they even die and thereby forgotten by being placed in care homes and hospitals. ...  And then, to offer final purification to the sphere of the living from the spectre of death, the remains of the dead are not brought back into the community to enter a new phase of belonging, but are further excluded from it by being left outside the camp of the living.

Saad argues that burial helps promote the psychological health of the living community. Without visible memorials, we lose a sense of history. “The living can thus believe that they are unmoored from all generations before their own, and therefore have a reduced sense of the continuing existence in space and time of their own lives, those who have gone before them, and those still to come.”

He concludes:

“Burial treats corpses in a way which makes the best anthropological, personal and intuitive sense, respects the dead, and gifts the community with a rich memory repository. It enables death to be among us but at a safe distance, allowing us to learn all that we must from it, and live well in its awareness. Death should be didactic in this way.”



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November
11
 

German serial killer nurse may have killed at least 106

Neils H in court in 2015 with his lawyer

As a reminder that you don’t need semi-automatic rifles to be a mass murderer, German prosecutors have raised the death toll at the hands of a male nurse to about 106. “Niels H”, 41, had already been convicted on two counts of murder and four of attempted murder in nursing homes in the northern German cities of Oldenburg and Delmenhorst between 1999 and 2005.

However, investigations have continued after his conviction and the total is rising. In August, police said that they suspected that he may have killed 90 people after exhuming the bodies of more patients. Now they have added another 16. New charges will be brought next year.

There is a good chance that more murders will be discovered.

Why did Mr H do it? Prosecutors said the he felt bored with his repetitive work. He would inject patients with a drug which would cause the heart to misfire. Then he would resuscitate his victims. If they were lucky they would survive; if not, they became one of his statistics.



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November
11
 

Should Facebook have its own chapter in a bioethics text?

Why hasn’t bioethics taken on the challenge of social media? After all, Facebook, Instagram, Snapchat and other products are changing the way that we interact and how we think. If gun control is a bioethical issue, why not the seductive power of products scientifically tailored to weaken autonomy and exploit human weakness?

Without lingering on this immense topic, here are some widely reported remarks by Sean Parker, a young billionaire who was Facebook’s founding president and the co-founder of Napster:

“When Facebook was getting going, I had these people who would come up to me and they would say, ‘I’m not on social media.’ And I would say, ‘OK. You know, you will be.’ And then they would say, ‘No, no, no. I value my real-life interactions. I value the moment. I value presence. I value intimacy.’ And I would say, ... ‘We’ll get you eventually.’”

“I don’t know if I really understood the consequences of what I was saying, because [of] the unintended consequences of a network when it grows to a billion or 2 billion people and ... it literally changes your relationship with society, with each other ... It probably interferes with productivity in weird ways. God only knows what it’s doing to our children’s brains.”

“The thought process that went into building these applications, Facebook being the first of them, ... was all about: ‘How do we consume as much of your time and conscious attention as possible?’”

“And that means that we need to sort of give you a little dopamine hit every once in a while, because someone liked or commented on a photo or a post or whatever. And that’s going to get you to contribute more content, and that’s going to get you ... more likes and comments.”

“It’s a social-validation feedback loop ... exactly the kind of thing that a hacker like myself would come up with, because you’re exploiting a vulnerability in human psychology.”

“The inventors, creators — it’s me, it’s Mark [Zuckerberg], it’s Kevin Systrom on Instagram, it’s all of these people — understood this consciously. And we did it anyway.”

At first blush, the link to medicine and health may seem tenuous. But consider well-known topics like doctors discussing patients on Facebook, cyberbullied teens committing suicide, advertising for organ donors and advertising for surrogate mothers. Surely bioethicists could shed some light on a commercial product whose by-product is violations of privacy, facilitating shady practices, and suicide ... 



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November
11
 

Is human gene editing around the corner?

The development of CRISPR gene editing technology has quickly led to calls for modifying the human germline. In a recent article in the Wall Street Journal, Stanford medical researcher Henry I. Miller declared that the time had come. It was wrong to deprive desperate parents who are carriers of genetic diseases of their chance to have healthy children. “The technology is arguably at the stage where clinical trials could be undertaken to see whether gene-edited human embryos can develop into healthy babies.”

However, stem cell expert Paul Knoepfler disagreed strongly on his popular blog, “The Niche”. He argues that the science is very far from perfect.

It’s unwise to rush into human clinical research of any kind and that’s especially true if it includes heritable genetic modification. You first need reproducible, rigorous data to back you up from sufficiently power studies and a good sense of anticipated risks.

Furthermore, it seems irresponsible to experiment with human lives.

“what happens to the unhealthy or deceased CRISPR’d humans you made in your experiment that didn’t turn out the way you had hoped? We just say “oops”? Or what if the babies seem OK at first, but then later they become ill or die? These are not fun questions to ask or ponder, but they are deeply important if we are going into this with our eyes open.”

Although, like most stem cell scientists, Knoepfler is not opposed in principle to germline modification if worked perfectly, he believes that talk of “designer babies” and altering the human genome is mostly hype at the moment:

In the end, heritable human CRISPR is still largely a wild idea whose time has definitely not come today. From scientific and medical as well as perspectives, it’s not something close to being ready to even just test reproductively in humans in a responsible way. Unfortunately, again it could be tried in an irresponsible manner at just about any time now.



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November
11
 

Choice and non-choice in an organ market

Several ethicists have argued in favour of legalising the sale of human organs. Some claim that a commercialised organ market will help to solve the organ shortage currently facing many countries, while others argue that every individual has the right to decide what happens to their own body parts.

In a new article in the Journal of Medical Ethics, Monash University bioethicist Julian J. Koplin challenges some of the liberal presuppositions built into the organ trade literature. Specifically, Koplin argues that an organ market will potentially limit people’s choices rather than increase them. According to Koplin, the evidence from Iran and other countries with organ markets suggests that people feel pressured into selling their organs for financial reasons. In post on the JME Blog, Koplin wrote: 

Sellers in both Iran’s legal market and black markets elsewhere in the world report having been coerced or pressured to sell a kidney by moneylenders, husbands, or other family members. A market in organs could also make some people worse off by altering the terms of trade. For example, moneylenders may offer less favourable terms for loans once they come to expect their borrowers can ‘mortgage’ their kidneys. Here, too, there is some evidence of this phenomenon occurring in existing kidney markets.

Koplin also suggests that the regulations for kidney markets proposed in the literature would either fail to protect disenfranchised members of society from coercion, or would fail to attract an adequate number of organ vendors. “A market structured to exclude the financially vulnerable seems unlikely to attract an overabundance of willing kidney sellers”, Koplin suggests.



This article is published by Xavier Symons and BioEdge.org 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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November
11
 

Woman in minimally conscious state should be allowed to die – UK court

A British High Court judge has ruled that an elderly woman in minimally conscious state should have artificial feeding withdrawn. Justice Anthony Hayden asserted that it would be in the woman’s “best interests” for nutrition to be discontinued.

The 72-year-old woman was admitted to hospital after a fall last November, and lapsed into a minimally conscious state following an acute haemorrhage from a brain aneurysm.

She had been on life-support for months, and doctors and family were unable to agree about whether artificial feeding should be continued. Salford Royal NHS Foundation Trust recently applied to the Court of Protection for a ruling that continuing the feeding was in her best interests.

But Justice Hayden ruled in favour of the woman’s daughter (who opposed feeding), saying that there was “clear and compelling” evidence that the woman would not have wanted life support to continue. The woman’s daughter said that had previously expressed a wish not to be kept alive if severely handicapped, especially if mental function was affected severely. Evidence in the case included an email sent by the woman in 2013 in which expressed the desire not to be kept alive if she found herself incapacitated.

The case follows a landmark ruling in September that clinically assisted feeding and hydration may be withdrawn from patients in a persistent vegetative or minimally conscious state without going to court, where doctors and families agree.



This article is published by Xavier Symons and BioEdge.org 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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November
11
 

Japanese grant residency to AI chatbot

Last week BioEdge reported that Saudi Arabia had become the first nation to grant citizenship to a robot. This week, a chatbot programmed to be a seven-year-old boy has been granted residency in Tokyo, Japan.

The chatbot, dubbed “Shibuya Mirai”, received a special residency card for Shibuya Ward in a ceremony last week, coinciding with a conference about children living in the ward.

“His hobbies are taking pictures and observing people,” Shibuya Ward said in a statement seen by AFP. The boy’s face is a digital amalgamation of profile photos of the residence of Shibuya.

The AI bot is intended to provide a more accessible interface between the local government and the inhabitants of Shibuya, though its precise role in the ward is yet to be decided.



This article is published by Xavier Symons and BioEdge.org 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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November
04
 

Is euthanasia for psychological suffering changing Belgian medicine?

Belgium’s debate over euthanasia for psychological suffering is heating up. On Tuesday 42 psychiatrists, psychologists and academics published an open letter calling for a national debate on euthanasia and mental illness.

Euthanasia because of unbearable and futile psychological suffering is very problematic. It is about people who are not terminal and, in principle, could live for many years. Therefore, extreme caution is appropriate both clinically and legally. The essence of the case seems to us that in estimating the hopelessness of one's suffering, the subjective factor cannot be eliminated ...

The current law, the signatories say, is far too vague and flexible:

"The law does not indicate the exact criteria for unbearable and psychological suffering. Any complaint about any carelessness in this area will only end in a legal ‘no man's land’.

"More and more, no matter how many criteria there are, it depends simply on how an individual psychiatrist interprets or tests them, aided by the doctor's own assumptions and the patient's account of his symptoms."

Some people are dying unnecessarily, the signatories claim. To stand silently on the sidelines is a crime of neglect.

Euthanasia for psychological suffering is not a topic which greatly interests the Belgian media. But it was jolted out of its slumber by an exclusive article (in English) from Associated Press which also appeared in the Washington Post. This prompted a number of articles in the local press.

The article in the Washington Post highlighted a conflict between Wim Distelmans, the head of the federal euthanasia commission, and Lieve Thienpont, a psychiatrist who has processed a number of patients who wanted euthanasia on the basis of psychological suffering. According to the AP’s report, Distelmans believed that she had allowed patients to be euthanised who did not fulfil the criteria set down by Belgium’s euthanasia legislation.

Thienpont denied this and blamed some of her patients for misrepresenting her. “These patients are very desperate, stressed,” she said. “They say things that are not always correct.”

This week Ignaas Devisch, a bioethicist at Ghent University, questioned the argument put forward by Thienpont.

Talk about paternalism! Suddenly, people who were previously able to achieve full self-determination and who just requested euthanasia, were no longer able to articulate their thoughts in an appropriate way.

This argument reveals a gigantic problem: if a psychiatrist who deals with requests for euthanasia due to a psychiatric disorder doubts at the same time whether those same people can make a clear judgment about themselves, that is so much as saying that their euthanasia request is a highly problematic case.

A long feature in the magazine Knack this week illustrates some of the difficulties that Belgian psychiatrists now find themselves in. One experienced psychiatrist complained that it had changed her relationship with her patients, even though she supports the idea of euthanasia.

"Strangely enough, people with less severe and readily treatable mental disorders – such as borderline personality disorders – request euthanasia more often than seriously ill patients. The offer really creates the question. Euthanasia has become a new symptom. Often it's a cry for help: 'Am I still worth living, or are you giving up on me?' But it is a symptom with particularly dangerous consequences...

"If you refuse to take the euthanasia question seriously, you put the relationship with the patient at risk and lose your trust...

"Since the euthanasia law there has been some kind of madness in our work. After the threat of suicide, for which you must be constantly on guard as a psychiatrist, there is now the threat of euthanasia. " 



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November
04
 

New Hippocratic Oath for doctors approved

A modern successor to the Hippocratic Oath for physicians around the world has been approved by the World Medical Association. This is the first revision in a decade and reflects changes in the climate of medical ethics.

First of all, the “Declaration of Geneva” is to be called, not an “oath”, but a “pledge”. The most striking change is the emphasis on patient autonomy. A clause has been inserted into the 2017 version which says, “I will respect the autonomy and dignity of my patient”.

A somewhat unusual new clause requires doctors to look after their own health: “I will attend to my own health, well-being, and abilities in order to provide care of the highest standard”.

There is a new obligation on physicians to share their knowledge for the benefit of their patients and for the advancement of healthcare.

The current Declaration of Geneva is used across the world by physicians. In many countries it is actually part of the medical professional code and in some it is legally binding. However, in other countries it is either not used at all or has been adapted. The revised pledge is suppoed to be a global ethical code for all physicians. WMA President Dr Yoshitake Yokokura said:

“The life of physicians today is completely different to what it was in 1948 when the original Declaration of Geneva was adopted. Since then, the Declaration has become a core document of medical ethics and a modern version of the 2,500-year old Hippocratic Oath. We hope that the Declaration approved today will be used by all physicians around the world to strengthen the profession’s determination to maintain the highest standard of health care for patients.”

It is interesting to compare the 2017 version with the 1948 version. In many respects they are strikingly different.

1948: I will maintain the utmost respect for human life from the time of conception  
2017: I will maintain the utmost respect for human life.

1948: even under threat, I will not use my medical knowledge contrary to the laws of humanity  
2017: I will not use my medical knowledge to violate human rights and civil liberties, even under threat.

1948: I will maintain by all the means in my power, the honor and the noble traditions of the medical profession; my colleagues will be my brothers 
2017: I will foster the honour and noble traditions of the medical profession

Here is the complete text of the 2017 version:

AS A MEMBER OF THE MEDICAL PROFESSION:

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

THE HEALTH AND WELL-BEING OF MY PATIENT will be my first consideration;

I WILL RESPECT the autonomy and dignity of my patient;

I WILL MAINTAIN the utmost respect for human life;

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

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

I WILL PRACTISE my profession with conscience and dignity and in accordance with good medical practice;

I WILL FOSTER the honour and noble traditions of the medical profession;

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

I WILL SHARE my medical knowledge for the benefit of the patient and the advancement of healthcare;

I WILL ATTEND TO my own health, well-being, and abilities in order to provide care of the highest standard;

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

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



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November
04
 

New study casts doubt on effectiveness of euthanasia regulation in the Netherlands

“Strict”, “scrupulous” and “rigid”. These are some of the words that have been used to describe the regulation of euthanasia and assisted suicide (EAS) in the Netherlands. But how closely are doctors actually monitored?

A new study by researchers from the National Institutes of Health (NIH) suggests that the Dutch euthanasia review committees (RTE) struggle to judge whether doctors have correctly applied EAS criteria, and are ultimately dependent on the transparency with which physicians report cases of EAS.  

The study, authored by David Miller and Dr Scott Kim from the NIH’s bioethics department, analyses 33 cases from 2012-2016 in which the RTE committees deemed that doctors had failed to meet due care criteria.

The results are revealing. In light of the “open-ended” and “evolving” nature of the Dutch criteria for EAS, the RTE committees focus primarily on whether doctors have followed procedural regulations, rather than whether the patient was actually eligible for euthanasia.

“Evaluating patient’s [euthanasia] requests requires complicated judgements in implementing criteria that are intentionally open-ended, evolving and fraught with acknowledged interpretive difficulties. Our review suggests that the Dutch review system’s primary mode of handling this difficult is a trust-based system that focuses on the procedural thoroughness and professionalism of physicians”.

The study found that out of 33 cases reviewed, 22 failed to meet only the procedural due care criteria (i.e., due medical care and consulting an independent physician). “These criteria are more clearly operationalised than other criteria”, the authors observe.

In seven of the cases, the committee deemed that the consulting physician was not sufficiently independent from the EAS physician. In 14 of the cases, physicians were found not to have followed “due medical care”. The authors write that “this criterion was most commonly not met because physicians incorrectly used drugs, dosing regimens (too low), rout of administration (intramuscular instead of intravenous) or order of administration of EAS drugs (eg, paralytic before sedative).”

Even when substantive criteria were at issue, the authors write that “ the RTE’s focus was generally not on whether the physician made a ‘correct’ judgement, but on whether the physician followed a thorough process (ie, whether the physicians should have consulted specialists or evaluated the patient further, but not whether the patient should have received EAS)”.

In six of the cases, the RTE found that the EAS physician had not been thorough enough in applying the “unbearable suffering” criterion.

*A correction has been made to an earlier version of this article. The deaths of the patients were by virtue of euthanasia, not physician assisted suicide. 



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November
04
 

Saudi Arabia grants citizenship to a robot

Saudi Arabia garnered criticism and claims of hypocrisy this week after it became the first country in the world grant citizenship to a robot.

At the Future Investment Initiative -- a three day technology conference held in Riyadh -- a humanoid robot named Sophia took the stage and announced (in conversation with a moderator) that she had just become a citizen of the Middle-East nation.

“I am very honored and proud for this unique distinction. This is historical to be the first robot in the world to be recognized with a citizenship,” Sophia told the audience.

Sophia also fielded questions from the audience about artificial intelligence, and said that she wanted “to live and work with humans” and “to understand humans and build trust with people”

Saudi Arabia is regularly criticised for its woeful human rights record and poor treatment of women, and the country was slammed on social media after the citizenship announcement went viral.

“It hit a sore spot that a robot has citizenship and my daughter doesn‘t,” said Hadeel Shaikh, a Saudi woman whose four-year-old child with a Lebanese man does not have citizenship. Women married to foreigners in the gender-segregated nation cannot pass on citizenship to their children.

Saudi Arabia also requires a male family member to grant permission for a woman to travel.

“I’m wondering if robot Sophia can leave Saudi Arabia without her guardian consent!” tweeted Saudi feminist Moudi Aljohani, who is based in the United States.



This article is published by Xavier Symons and BioEdge.org 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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November
04
 

Victorian euthanasia bill one step closer to passing

Victoria’s euthanasia bill has passed a major hurdle, with the upper house voting to progress the bill to a committee stage before a final vote.

The Members of the Legislative Council voted 22-18 in favour of the bill after a second reading, and will now debate a range of proposed amendments aimed at strengthening safeguards and tightening eligibility criteria.

Parliament sat for two days as members gave impassioned speeches both for and against the proposed euthanasia scheme.

Labor MP Harriet Shing brought the chamber to tears as she described caring for her brother Patrick as his body was wracked with pain by aggressive prostate cancer that spread to his bones.

“We were hopeless and helpless,” she said. “I used to hear him weeping in his room at night when he thought I couldn’t hear”.

Liberal MP Inga Peulich said the debate had made her feel “sick to the stomach” and warned that she could faint before reaching the end of her speech, as she implored MPs to oppose the bill.

Among the proposed amendments to the bill are that the maximum life expectancy of patients be shortened from 12 to 6 months, and that more precautions be taken to ensure that ineligible individuals cannot access the lethal drugs.

Late last month the bill cleared the lower house of Parliament after a marathon four-day sitting.



This article is published by Xavier Symons and BioEdge.org 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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November
04
 

Is there any difference between euthanasia and palliated starvation?

While euthanasia and assisted suicide are currently illegal in most countries, the practice of voluntarily stopping eating and drinking (VSED) is seen by some as an ethically and legally permissible alternative. VSED refers to seriously-ill patients refusing to eat and drink for a sustained period of time with the intention of bringing about their own death.

Yet a new paper published in BMC Medicine argues that VSED is ethically indistinguishable from assisted suicide, and should be subject to the same legal regulations as more salient cases of assistance in dying.

The paper, lead-authored by Ralf J. Jox of the Institute for Ethics, History and Theory of Medicine at the University of Munich, argues that “supporting patients who embark on VSED amounts to assistance in suicide, at least in some instances, depending on the kind of support and its relation to the patient’s intention”.

While VSED does not involve an invasive or aggressive act like many other means of suicide, the authors write that “VSED should [nevertheless] be considered as a form of suicide, as there is both an intention to bring about death and an omission that directly causes this effect”. Doctors who assist patients in VSED -- by encouraging them, or promising pain-relief if VSED is undertaken -- are potentially instrumental in the deaths of the patients, as the suicide would not occur without them, and they share the patient’s intention of inducing death.

The authors of the paper conclude that the same legal prescriptions or regulations that apply to physician assisted suicide should also apply to VSED.

“[We] maintain... that future ethical discussions on assisted suicide require consideration of medically supported VSED, and vice versa...Thus, the widely held position by palliative care societies, professional bodies of physicians, legal scholars, and ethicists to disapprove of assisted suicide but approve of and even promote medically supported VSED appears inconsistent”.


This article is published by Xavier Symons and BioEdge.org 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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November
04
 

Stem cell superstar crashes and burns

Macchiarini at a 2008 press conference  

Italian surgeon Paolo Macchiarini was once one of the world’s most feted doctors after creating artificial tracheas which gave new life to his patients. He was a poster boy for regenerative medicine.

However, his achievements have crumbled into dust after three of his patients died and many of his claims could not be supported.

According to a recent report in The Scientist, an Expert Group on Scientific Misconduct at Sweden’s Central Ethics Review Board (CEPN) has found evidence of scientific misconduct in six of his synthetic trachea transplantation publications. It has recommended that all six be retracted.

CEPN’s statement about Macchiarini’s research was scathing:

“... the transplantations are described successfully in the articles, which is not the fact. The Expert Group has also established that the information in the articles are misleading and beautifying regarding the patients’ conditions and furthermore that information has been withhold in this purpose and that this constitutes scientific misconduct.

“In addition, there is false information of ethical approval, which also constitutes scientific misconduct.

“The Expert Group finds that all co-authors to the six articles are guilty of scientific misconduct. The responsibility is however different amongst the authors. The main responsibility lies on Paolo Macchiarini as the main author and research-leader and others who have had a more prominent role in the research and the authorship. The more detailed responsibility and the future consequences for the respective authors is up to their employers to decide.”

How could Macchiarini have conned so many people? One reason is that the Karolinska Institute, the home of the Nobel Prize for Medicine and Physiology, which had employed him as a superstar researcher, neglected to apply normal safeguards. Now his downfall has seriously dented the Karolinska’s prestige and morale. Its vice-chancellor, the dean of research and the the secretary-general of the Nobel Committee have resigned. The university board was dismissed and the chancellor for all Swedish universities lost her job.

Another reason may be the allure of stem cells. According to The Guardian, “Articles in this area are retracted 2.4 times more often than the average for biomedicine, and over half of these retractions are due to fraud.”



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November
04
 

The Eleanor Rigbys of the world are health timebombs

Our crowded, lengthy commutes are making us more lonely than ever”. “Eating alone is BAD for your health - especially if you're a man, study shows”. “Japan’s solution to loneliness: virtual wives.” “Loneliness: a silent plague that is hurting young people most”.

There is no lack of interest in the topic of loneliness, as these headlines indicate. But there’s less agreement amongst researchers about what can be done about it.

"Loneliness is a major social, educational, economic and health issue that will reach epidemic proportions by 2030," says Prof Stephen Houghton, of  the University of Western Australia. "At the moment there are no interventions. Where are they? I can't find any."

According to a feature in this week’s JAMA, loneliness – “defined as a distressing discrepancy between desired and actual levels of social contact” -- appears to be a serious health risk for issues like cardiovascular disease, Alzheimer disease, stroke, and insomnia. It is believed, however, that the incidence of loneliness has remained constant over the last 50 years at about 10%.

“One of the issues that we need to pay attention to is that loneliness and social isolation are different,” says Julianne Holt-Lunstad, of Brigham Young University in Provo, Utah. “Lonely people are not necessarily isolated, and isolated people are not necessarily lonely. But while they might be different, they carry similar health risks, she said, adding that she is concerned that “there may be a perception that as long as you don’t feel lonely, you’re fine.”

Nearly all the research indicates that loneliness can be devastating. “You can be absolutely certain that loneliness messes up your quality of life,” Christina Victor, of Brunel University London, told JAMA.  “It’s an unpleasant experience. It compromises well-being.”

Unfortunately intuitive solutions, like creating an army of “befrienders” to visit lonely people, don’t necessarily work. Studies have shown that this may help, but the results are not statistically significant.

With Christmas approaching, campaigns to befriend some of the army of lonely people (usually the elderly) will spring up. It’s a generous gesture – but how much good will it actually do in the end?



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October
28
 

Vic euthanasia bill hangs in balance as World Medical Association intervenes

The debate over euthanasia in the Victorian Upper House will be “mean” and “protracted”, according to one proponent of the government’s assisted dying scheme.

After a fairly swift passage through the Victorian Lower House, the government sponsored Voluntary Assisted Dying Bill 2017 is set to meet fierce opposition among members of the Legislative Council, and it is possible that the bill will be significantly amended or even defeated.

While the expectation among political pundits was that the bill would pass the Upper House with little resistance, the past week has seen at least two politicians abandon their support of the scheme, and other politicians who were in principle supportive have say they will propose several amendments to ramp up safeguards.

"Debate in the upper house will be meaner and more personal than it was in the lower house," Fiona Patten of the Reason Party told AAP.

Liberal MP Georgia Crozier and Nationals MP Luke O’Sullivan said that they had serious concerns about the bill and told reporters this week that they no longer supported the bill.

Liberal MP Simon Ramsay said he supported assisted dying but that he wanted to see more safeguards around access to the drug itself. “The 12-month period is also a worry to me, because I believe that a lot can change in a 12-month period -- there might be a new drug that comes on the market, or changes in the behaviour of someone’s illness or cancer”.

Meanwhile, the World Medical Association has strongly urged Victorian Parliamentarians to vote against the bill, saying that euthanasia is violates the basic principles of medical ethics. In a statement released Friday, the WMA said:

“[Legalised euthanasia] will create a situation of direct conflict with physicians’ ethical obligations to patients and will harm the “ethical tone” of the profession...it is in conflict with basic ethical principles of medical practice, and [the WMA] strongly encourages all national medical associations and physicians to refrain from participating in euthanasia, even if national law allows it or decriminalises it under certain conditions.”


This article is published by Xavier Symons and BioEdge.org 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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October
28
 

Ectogenesis: the end of the abortion debate?

Ectogenesis, or the gestation of fetus in an environment ex utero, was once an idea confined to the realm of science fiction. But research involving the incubation of premature lambs in artificial gestation bags has made pundits think that fetal development ex utero may soon be possible.

The possibility of ectogenesis raises significant ethical questions, such as this: “will ecogenesis allow us to reconcile pro-choice and pro-life positions on abortion?”

Some ethicists say “yes”. In theory, the new technology will mean that we no longer have to argue about the burden that pregnancy places on a mother, as ectogenesis literally takes away the physical burden that child poses (at least for the duration of fetal development).

Bioethicists Eric Mathison and Jeremy Davis from the University of Toronto recently argued that women have a right to abortion -- i.e., having fetuses removed from their bodies --  but not a right to kill the fetus. Mathison and Davis argue that removing a fetus and placing it in ectogenesis is a way of respecting both the rights of the mother and the rights of the fetus. They call their solution to the abortion dilemma “ectogenesis abortion”.

But some ethicists are suspicious of this view. In a paper published recently in the journal Bioethics, Joona Rasanen, a graduate of the University of Helsinki,  argues that even when the fetus has been removed from the mother, parents still have a right to genetic privacy and property rights. These rights in turn give them a “right to the death of the fetus”.

“...if ectogenesis abortions become reality, some women (and men) will have genetic children out there who carry their genetic material without their consent. In this scenario, their right to genetic privacy has been violated, and the only way to avoid this is if they have a right to the death of the fetus…[and] there is yet another way to claim that the genetic parents have a right to the death of the fetus: the genetic parents own the fetus, and because of that, their property rights are violated if the fetus is gestated in an artificial womb without their consent.”


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October
28
 

Groundbreaking surgery may prevent worst effects of spina bifida

A team of American surgeons have pioneered a groundbreaking surgical technique that may prevent many of the severe health problems caused by spina bifida.

Spina bifida is congenital defect involving an abnormal development of the spine. It is caused by an incomplete closing of the backbone and membranes around the spinal cord, and can lead to serious health problems such as impaired mobility, incontinence, and an accumulation of fluid in the brain. Many parents chose to terminate their pregnancy when they discover their child has the condition.

Yet surgeons from Baylor College of Medicine, led gynecologist Dr Michael A. Belfort, are hopeful that they can stop some of the worst effects of spina bifida through an early intervention during pregnancy.

Rather than attempting an operation within the mother's body, the new technique involves a temporary removal of the womb that allows doctors better access to spinal cord of the fetus.

Using a “fetoscope” and special surgical tools, doctors drain amniotic fluid from the back of the fetus and seal the skin over spinal cord to prevent further exposure. The womb is then inserted back into the mother.

Results from 28 cases in which the operation has been performed were reported in an August edition of the journal Obstetrics and Gynecology. The intervention does not appear to have negative effects on the outcome of the pregnancy, and it vastly decreases the likelihood of mobility problems for the child. Fetuses who receive the surgery are much less likely to need a shunt, though children still often need a catheter to pass urine.



This article is published by Xavier Symons and BioEdge.org 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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October
28
 

Belgium: euthanasia doctors split over psychiatric illness

Psychiatrist Dr. Lieve Thienpont, right, speaks with a patient who received approval for euthanasia about a year ago,

Even the controversial head of Belgium’s euthanasia commission is concerned that a well-known Belgian psychiatrist is allowing too many of her psychiatric patients to be euthananised.

Dr Wim Distelmans, an oncologist and the chair of the country’s euthanasia commission has also helped to found a number of end-of-life clinics. He is euthanasia’s most prominent defender in Belgium. However, even he is alarmed at the policies followed by psychiatrist Lieve Thienpont. According to an investigative report by Associated Press, backed up by a leak of confidential documents:

In 2015, Thienpont was the lead author of a paper published in the medical journal BMJ Open, tracking 100 of her patients who requested euthanasia between 2007 and 2011. Of those, 48 were granted.

Some doctors were stunned by the high number of requests Thienpont fielded and how many were approved. At some other major psychiatric centers in Belgium, doctors receive only a handful of such requests every year, of which perhaps about 10 to 30 percent are accepted, according to several psychiatrists who deal with such requests.

“That one single psychiatrist in Belgium has had such a major impact on the practice of euthanasia in psychiatric patients is very alarming,” said Dr. Stephan Claes, a psychiatrist at the University of Leuven.

In a February 13 letter, Distelmans told Thienpont that some of her patients may have been killed without meeting a legal requirement that an independent consultation be performed first.

“Your euthanasia cases will not be treated anymore within our operation. The reason is a difference of opinion on how a request for euthanasia must be approved. We have already communicated this several times orally, but to no avail.”

Distelmans and his colleagues appear to be concerned that Thienpont was filling her psychiatric patients with unrealistic expectations about their requests for euthanasia.

“We found several times that you had already made promises to patients that were referred to us,” they wrote, and that such “promises” undermined their own attempts to engage with patients and figure out if euthanasia was justifiable. “We want to distance ourselves from this way of working.”

Other psychiatrists are trying to draft guidelines which will make it harder for psychiatric patients to access euthanasia. “I’m convinced that in Belgium, people have died where there were still treatment options and where there was still a chance for years and even decades of (quality) life,” Dr Joris Vandenberghe, a psychiatrist at the University of Leuven, told AP.  



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October
28
 

ShanidarCare: Neanderthals cared for their own

Kurdistan is a dangerous place today, but 50,000 years ago, Neanderthal hunter-gatherers had to keep a weather eye open, too. There were bears, cheetahs, lions, leopards, hyenas, and jackals, not to mention snakes and scorpions. An unwary step and you were literally dead meat.

Which makes it all the more surprising that a man named (by scientists) Shanidar 1 survived into his 40s or 50s – perhaps the equivalent of about 80 nowadays. He must have had the late Pleistocene equivalent of top-drawer Obamacare from his tribe.

A technical, but very significant, article in PLOS One, examines the skeleton of a Neanderthal found in Shanidar Cave, near Erbil, in Iraq. The site, which contains the remains of 10 Neanderthals, has been known since the late 1950s. But a more thorough examination of Shanidar 1 shows that he was suffering from serious handicaps.

Previous studies of his skull and other skeletal remains had noted his multiple injuries. He had sustained a serious blow to the side of the face which probably blinded him in one eye, fractures, the amputation of the right arm at the elbow, and injuries to the right leg, as well as a systematic degenerative condition.

What the most recent examination discovered was that he may also have been profoundly deaf.

"More than his loss of a forearm, bad limp and other injuries, his deafness would have made him easy prey for the ubiquitous carnivores in his environment and dependent on other members of his social group for survival," said co-author Erik Trinkaus, of Washington University in St. Louis.

Bony growths in Shanidar 1's ear canals would have produced profound hearing loss. In addition to his other debilitations, this sensory deprivation would have made him highly vulnerable in his Pleistocene context.

As the co-authors note, survival as a hunter-gatherer in the Pleistocene presented numerous challenges, and all of those difficulties would have been markedly pronounced with sensory impairment. Like other Neandertals who have been noted for surviving with various injuries and limited arm use, Shanidar 1 most likely required significant social support to reach old age.

"The debilities of Shanidar 1, and especially his hearing loss, thereby reinforce the basic humanity of these much maligned archaic humans, the Neandertals," says Trinkaus. 



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October
28
 

If you want to be a surrogate, make sure you have a lawyer

Another chapter in The Reproductive Revolution, this time (as so many other times) from California via a report by Jane Ridley in the New York Post. Jessica Allen, 31, already had two sons with her partner and decided to give the gift of life to another couple as a surrogate mother. Through a surrogacy broker, Omega Family Global, they were introduced to Mr and Mrs Liu (a pseudonym), a Chinese couple. Commercial surrogacy is illegal in China and the Lius had come to California for a baby.

Things began smoothly. The Liu embryos were implanted in April 2016 and the pregnancy seemed normal. A few weeks later came the good news that there were twins, and Ms Allen’s fee was increased from US$30,000 to $35,000.

A C-section birth took place on December 12. The commissioning couple refused to let Ms Allen hold the babies, which, she claims, was against their agreement.

On January 10, Mrs Liu sent a photo with a message: ““They are not the same, right? Have you thought about why they are different?”

It was obvious why they were different. Ms Allen and her partner had been given the go-ahead to have relations by her IVF doctor and the second baby belonged to her and her African-American partner. A DNA test confirmed Mrs Liu’s fears.

Then the fun began. Ms Allen and her partner (now her husband) wanted the child, whom they called Max. The Chinese couple did not want Max, but they clearly were the legal parents. They handed him over to Omega with instructions to adopt him out and then demanded between $18,000 and $22,000 in compensation from Ms Allen. On top of that, the case worker for Omega demanded $7,000 in costs for looking after the baby. Ms Allen complains in her first-person narrative in the New York Post, “It was like Max was a commodity and we were paying to adopt our own flesh and blood.”

Ms Allen hired a lawyer and eventually the fees were negotiated down. Finally, on February 5, two months after the birth, an Omega employee handed Max over in a Starbucks parking lot. A happy ending.

NB. The New York Post notes that “Omega Family Global disputes Allen’s allegations but is precluded by nondisclosure agreements and federal patient privacy laws from going into specifics.” A letter from Omega says sternly that “the allegations are not only false but made with reckless abandon for the truth.” 



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October
28
 

Pope Francis slams eugenic mentality behind down-syndrome abortions

Pope Francis has condemned the “eugenicist” mindset behind increased rates of abortion of children with down-syndrome, saying that people with disabilities face an “attitude of rejection” in contemporary society.

The Pope’s remarks were made at a conference on the inclusion of people with disabilities in parish life, held at the Vatican last weekend.

Addressing an audience of hundreds in the Clementine Hall, the Roman Pontiff said that the desire to “suppress the unborn who have some form of imperfection” was proof of a “eugenic tendency” within society, and he warned of the danger of trying to deny the inherent vulnerability of human beings:

“we all know so many people who, even with their fragility, have found...a good life that is rich in meaning...vulnerability is part of the essence of man”.

Among the keynote speakers at the conference was down-syndrome American actress Bridget Brown, who warned attendees that she may be part of “the last generation of people with Down syndrome.”

The conference comes in the wake of the release of data indicating that nearly 100% of babies with down syndrome were aborted in 2015 in countries such as Iceland and Denmark.



This article is published by Xavier Symons and BioEdge.org 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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October
21
 

Voluntary Assisted Dying Bill passes Victoria’s Lower House

Australians watched this week as Victoria’s State parliament debated the government-sponsored Voluntary Assisted Dying Bill 2017.

The bill – which would allow assisted suicide and euthanasia for terminally ill patients with less than 12 months to live – has been fiercely criticised by parliamentarians from all sides of politics, and even faced a scare from Deputy Premier James Merlino, who on Wednesday evening unsuccessfully attempted to put the legislation on an indefinite hold. In a marathon 26 hour sitting of parliament on Thursday and Friday, opponents of the legislation proposed more than 150 amendments, all of which were rejected by the government. The Bill passed on Friday morning with a majority of 47 to 37.

Analysts believe that the result of the Victorian bill will have a massive impact on the outcome of euthanasia debates currently occurring in other Australian States and territories. New South Wales is currently debating very similar legislation to that proposed in Victoria, and Western Australia has convened a parliamentary committee to examine “end of life choices”.

In a shock 11th hour intervention, former Australian Prime-Minister Paul Keating described the proposed Victorian legislation as “bald utopianism” and called on politicians to vote against the bill:

“What it means is that the civic guidance provided by the state ... is voided when it comes to the protection of our most valuable asset; the essential human rights of the citizenry, especially and particularly those in either a fragile state or state of mind or fragile period…To do or to cause to abrogate the core human instinct to survive and live for the spirit to hang on against physical deprivation, is to turn one’s back on the compulsion built into the hundreds of thousands of years of our evolution.”

The head of the Australian Medical Association, Michael Gannon, also expressed his staunch opposition to the bill:

“Euthanasia and assisted suicide are at odds with modern and ancient codes of medical ethics. Every life is precious: the 10-year-old boy in Roebourne with foetal alcohol spectrum disorder and severe autism, the 36-year-old veteran with post-traumatic stress disorder, the 68-year-old woman in Morwell with metastatic cancer and no children to be with her as she dies.”

The bill will now move to Victorian Legislative Council, where supporters are hopefully it has the numbers to pass. Debate in the Upper House will begin early next month.



This article is published by Xavier Symons and BioEdge.org 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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October
21
 

Does Asia have a distinctive bioethics?

The Western concept of autonomy, which dominates in the Anglo-American world at the moment, needs to be adapted in Asia to take account of local cultures.

In a very interesting article in The New Bioethics, Mark Tan Kiak Min, Principal Assistant Director at the Medical Legislation and Globalization branch of the Ministry of Health Malaysia, argues that there is one feature which shared by the complex diversity of Asian cultures: the importance of the family.

“Within a concept quite alien to the West, the individual is regarded as a smaller self within a larger self, where the well-being of the whole family is considered when making a decision and where familial autonomy becomes more important than individual autonomy ... for most Asians, family-sovereignty is placed before self-sovereignty and autonomy becomes collective rather than individualistic ...

“Asians continue to pursue a holistic happiness involving the welfare of the family and community — a stark contrast to the Western concept of individualistic happiness.”

This has very practical consequences in clinical settings:

Breaking bad news: physicians tend to discuss bad news first with the family and then with the patient. Although this may result in the patient being excluded from healthcare decisions, most patients are happy with this arrangement.

Withholding a diagnosis: if families decide that a bad news should be withheld, doctors normally honour this request.

The scope of informed consent. In Western countries, consent is deemed to be “informed” if patients have signed all the forms (many of which they do not understand). In Asia, it is not informed until the family agrees. For example, in a recent case, the Malaysian High Court ruled that a husband's consent is required if his wife has a hysterectomy.

End-of-life care: “in many other Asian countries, children often feel duty-bound to keep their parents alive and provide them with the best possible care available, regardless of the chances of survival or the immense cost that will be incurred.” This means that ill parents remain hooked up to medical machinery and die in hospital instead of at home.

Physician-assisted suicide and euthanasia: these concepts are alien to Asian cultures. “It appears incomprehensible that a discussion on a planned death will be able to take place in Asian culture where the mere discussion surrounding a natural death is already considered taboo in the first place.” 



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October
21
 

After 15 years, will the Dutch finally prosecute a euthanasia doctor?

For the first time since the legalisation of euthanasia in 2002, a doctor may be prosecuted for not following the letter of the law, according to a report in the BMJ.

The case, which was reported by BioEdge in February, concerned a 80-year-old woman with dementia who entered a nursing home because her husband could no longer care for her. When the woman was still lucid she expressed two wishes: (a) not to go into a "home for demented elderly" and (b) to be euthanised "when I myself find it the right time". Only the second wish was honoured.

She was unhappy in the nursing home and wandered the corridors at night. After seven weeks of this, the nursing home doctor decided that she must be suffering unbearably. Based on her previous statements, the doctor decided that euthanasia was appropriate, although she no longer understood the meaning of the word.

With members of her family in attendance, the doctor approached to give her a lethal injection. The woman was agitated, so the doctor slipped a sedative into her coffee. This did not work, so she gave her an injection. With all these drugs, the woman dosed off.

But when the needle for the lethal injection appeared, she started to struggle. The doctor had to ask the family members to hold her down so that she could continue with the injection. The woman died soon afterwards.

The Regional Euthanasia Review Committee has decided that the nursing home doctor “did not act in accordance with the criteria of due diligence” as set down in the legislation. They described the living will as “ambiguous and contradictory” and insufficient to justify euthanasia.

Now Dutch public prosecutors have embarked upon a criminal investigation of the doctor’s actions, citing a “serious suspicion” that a criminal offence had been committed.



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October
21
 

Iran’s legal market in kidneys creates a black market, too

ads posted in Teheran offering to sell kidneys  

Iran is the only country in the world where people can sell their kidneys legally. According to a report in the Los Angeles Times, recipients pay US$4,600 to the government transplant, and the donor (or seller) receives this when the operation is over.

“Yes, people donate because they need money, but this is a reality all over the world,” said Nasser Simforoosh, a Tehran transplant surgeon. “Instead of doing something illegal to cover their debts, like stealing or smuggling, they are saving a life first. This is not exploitation. The end result is good for the recipient and the donor.”

Unfortunately, in the shadow of the legal system a booming black market in organs has sprung up in which donors can sell their kidneys at a premium. Despite government crackdowns on illegal transplant operations, foreigners, ex-pats, or patients who do not want to wait in a queue are willing to pay higher rates. Near hospitals in Teheran are posters advertising the kidneys of the desperate and indebted. “If I could sell my kidney, I could get out of debt,” Ali Rezaei, a bankrupt 42-year-old told the LA Times. “I would sell my liver too.”

“The price is going to go higher and higher,” said Behrooz Broumand, of the Iranian Society of Organ Transplantation. “Transplant commercialism is a race. As long as there is poverty, they cannot stop it.”



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October
21
 

Burial rights do not extend beyond death

flowers at Saddleworth Moor where some of the victims were buried

Where and how should the most hated man in England be buried? Ian Brady and his lover Myra Hindley were described by the trial judge as "sadistic killers of the utmost depravity". They tortured and killed five children between 1963 and 1965.

Hindley died in 2002 and Brady finally passed away on May 17. He left explicit instructions in his will about how to dispose of his body. But such is the hatred of the “Moors Murderer” that local authorities want nothing to do with him. As a consequence, the body has been in a morgue for five months while his lawyer fights for his client’s last wishes.

While normally people are to be buried as they wish under English law, all that is required is that the disposal of the remains be “decent” and “lawful”. There is no requirement that the wishes of the deceased be honoured.

The details of Brady’s will not be released until after the burial. In the meantime the British media have had a field day publishing tales of posthumous depravity. Not that such suggestions are at all improbable, for Brady played mind games with the prison system, the legal system and the families of his victims until he died at the age of 79.

According to newspaper reports, he asked that his ashes be scattered on the moors where he had buried his victims, to the music of Hector Berlioz’s Symphonie Fantastique, a macabre composition in which the 19th Century French composer imagined his own funeral as a satanic orgy haunted by demons and witches. Another version cites the location as Glasgow, where he was born.

The government and the court fear a public outcry. It has been hard enough to find a crematorium which will dispose of the body. None of the authorities wants local land polluted with his remains.

A High Court judge hearing the case directed that responsibility for disposing for the remains be taken away from Brady’s solicitor and that there should be no music and no ceremony. He entrusted the disposal of the remains to a person whose name was redacted from the court document. 



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October
21
 

Mary Stopes staff pressured into pursuing abortions

As Britain marks the 50th anniversary of the 1967 Abortion Act, one of the country’s major abortion providers has gone into damage control after allegations of coercive staff performance policies.

The UK’s Care Quality Commission (CQC) this month released the results of a comprehensive inspection of Marie Stopes’ Maidstone clinic — an abortion facility in a country town. The report suggests that staff from the facility were being pressured into into “encouraging” women to have abortions. The report states:

“Staff [from the Marie Stopes’ Maidstone clinic] expressed concern that they were assessed and bonuses were paid based on performance against Key Performance Indicators (KPIs) for patients leaving the centre with long acting reversible contraception and “Did not proceed”. Staff felt that this corporate focus on achieving KPIs worked against the concept of patient choice”.

Inspectors uncovered a document referring to a “company-wide focus” on women who weren't going ahead with abortions, who were referred to as “Did Not Proceed” patients. Where a patient of less than 5 weeks and three days gestation had decided not to go ahead with the termination, they were being called by staff and offered a later appointment.

Staff from the facility expressed concern that the clinic had a "very target driven culture”, while one staff member described it as “feeling like a hamster in a wheel” and said the word, “Cattle market” came up quite a lot.

Marie Stopes UK managing director Richard Bentley strenuously denied the accusations: "[none of our] KPIs relate to client numbers, and it is untrue that any member of our staff receives a performance related bonus for the number of clients they treat”. 

But Conservative MP Fiona Bruce said the allegations indicate a “conveyer-belt culture” in Britain’s abortion industry: 

“It is shocking to hear that, at what is often such a difficult and stressful moment, abortion clinics are taking advantage of pregnant women by seeking to do as many abortions as they can, rather than seeking to give genuine, non-directional counselling and advice.”



This article is published by Xavier Symons and BioEdge.org 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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October
21
 

Calls for commercial surrogacy in Australia as children get ‘stranded’

An Australian couple living in the US has discovering that they will not be recognised as the parents of their surrogate-born children if they return home. 

David and Naomi Seddon were married in the US and had two baby girls via a commercial surrogate in California. The girls are US citizens, but will not be recognised as children of the Seddon’s under Australian law. Strictly speaking, the girls will only be eligible for a 90-day Australian tourist visa if the Seddons were to be forced  to return to Australia for good.

“If we were to not get our visas renewed we can't stay in US, but the girls can't [stay in] Australia — well they could for 90 days as tourists, because legally we're not their parents," Mr Seddon told reporters this week.

"We did not set out to break Australian law. We complied with the laws of the country where we have been living," Ms Seddon said. "We understand surrogacy is complex and needs regulation but for me not to be recognised as the parents of my children is just absolutely disgusting."

Currently all Australian states and territories – except the Northern Territory – only allow altruistic surrogacy (where the surrogate is reimbursed costs of the pregnancy alone). In September, the Family Court of Australia made a ruling that the parents of a child, who was born in India to a paid surrogate, could not be recognised as parents under the Family Law Act.

The court instead made an order of parental responsibility to the couple.

ART pioneer Gab Kovacs has called for immediate law reform, citing the increasing demand for surrogacy in Australia: “In Australia, there is a chronic shortage of gamete (egg or sperm) donors and women undertaking surrogacy, as opposed to an abundant supply of donors and commercial surrogates in countries where financial compensation is permitted.”



This article is published by Xavier Symons and BioEdge.org 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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October
21
 

Shrinks ganging up on Trump

A group of American psychiatrists is still trying hard to use the 25th Amendment to the US Constitution to depose President Donald Trump. About 67,000 people have signed a change.org petition “Mental Health Professionals Declare Trump is Mentally Ill And Must Be Removed”.

Duty to Warn, an initiative of clinical psychologist John Gartner, accuses the President of having a narcissistic personality disorder and being delusional and dangerous. Its argument is that under the 25th Amendment Trump should be removed on the grounds that he is psychologically unfit.

As you might expect, this has some support from Democrats in Congress. A Congresswoman from California, Zoe Lofgren, has introduced a resolution asking that the Vice-President and the Cabinet have Trump examined by medical and psychiatric professionals. Her press release states: “Does the President suffer from early stage dementia? Has the stress of office aggravated a mental illness crippling impulse control? Has emotional disorder so impaired the President that he is unable to discharge his duties? Is the President mentally and emotionally stable?

Since the early 60s, the two leading professional groups of psychiatrists and psychologists in the US have observed the “Goldwater Rule”, which barred members from diagnosing public figures. Only the American Psychoanalytic Association, a very small group of psychiatrists, has said that this is not binding on its members.

But some psychiatrists and psychologists are getting restless with Trump’s unconventional behaviour. Yale psychiatrist Bandy Lee has just released a book, “The Dangerous Case of Donald Trump” with essays by 27 psychiatrists, psychologists and mental health professionals analysing the President’s fitness for office.

They argue that their “duty to warn” Americans about Trump’s “madness” supersedes professional neutrality. Another even more controversial theme is that his “madness” is catching. From the trauma people have experienced under his administration to the cult-like characteristics of his followers, he has created unprecedented mental health consequences.

One argument against these mental health professionals is that mental illness may not disable a President. Writing in the New York Times, Peter D. Kramer and Sally L. Satel, note that:

But any number of presidents have remained in office despite some level of mental impairment. Historians believe that Abraham Lincoln, for example, had clinical depression. A president can have a mental disorder and, overall, function admirably. In the absence of disability, a president may be inexperienced, indecisive or inept. Psychiatrists would be alarmed if mental illness were considered an absolute bar to public service.



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October
14
 

Trump’s health department takes a pro-life turn

The new strategic plan for the US Department of Health and Human Services has accomplished the impossible -- getting progressives to hanker for the good old days of the Bush Administration.

Every four years the HHS publishes its plan for comment. This one, if approved, will run from 2018 to 2022.

What caught the eye of journalists was a revision of the HHS mission statement. This now reads “HHS accomplishes its mission through programs and initiatives that cover a wide spectrum of activities, serving and protecting Americans at every stage of life, beginning at conception.” It also uses phrases like respecting “the inherent dignity of persons from conception to natural death” and “the value of healthy marriages”. “Birth control” and “contraception” are not mentioned at all. These have set off alarm bells for progressive policy wonks. “This is [a] preamble to the Handmaid’s Tale,” wrote Dr Jen Gunter, an OB/GYN and a pain medicine physician, on her blog.

Even the Bush Administration was tamer and did not use “such overt anti-abortion language,” according to Think Progress.  

“Conception and natural death — that’s not the legal standard for anybody,” Kathleen Sebelius, the former head of HHS under Obama, told Vox. “There are states that allow assisted suicide. This does not seem to recognize the law.”

The strategic plan does not have the force of law, but it will guide policies at government agencies. It is obviously being used to reward the President’s pro-life supporters.

“The argument that life begins at conception has long been used by socially conservative activists to attack birth control access,” said Adam Sonfield, of the Guttmacher Institute, an abortion rights group. “It could now form the basis of a new wave of attacks against publicly funded family planning services, for instance, by attempting to redirect funding to entities that do not offer the full array of birth control methods.”

The draft strategic plan is open for public comment through October 27.



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October
14
 

‘Human dignity’ is not ‘useless’

Few concepts are more disputed in bioethics than “human dignity”. Ruth Macklin wrote a very short but very famous demolition of the notion in 2003, asserting that “Dignity is a useless concept”. The broad consensus amongst bioethicists is that she was right.

However, in the Journal of Medical Ethics, Linda Barclay, of Monash University, in Melbourne, takes a second look at her argument and concludes that while “human dignity” may be disputed and unclear, it is not altogether useless. For even though it has become a punching bag for bioethicists, there survives an “enormous practical concern for dignity in healthcare settings”.

She makes sense of this by accepting the traditional distinction between intrinsic dignity and extrinsic dignity. As for the former, she agrees with Macklin that it is a useless concept. But external dignity is far from useless; whether it is articulated or not, it is fundamental to healthcare. She interprets “dignity” as “status”.

On my conception of dignity, dignity is conferred in social relations where we follow social norms for treating people as sharing equal status. When we do so, we communicate to others that we consider them our social equals ... Conversely, people do not enjoy dignity when they are routinely treated in a way that relegates them to a lower social status.

Patients are often treated as social inferiors and their privacy, decorum and respect are disregarded. She cites one researcher who found that “the day-to-day exchanges of the sick, homeless and poor are characterised by rudeness, indifference, condescension, contempt, exclusion and vilification”.

This is not only a violation of their dignity, but poses a danger for their physical well-being. “Specifically, when people are regularly treated as social inferiors, they can be particularly vulnerable to maltreatment and abuse.” This danger is particularly acute for people with cognitive impairment, who become victims of dehumanising stigma.

Barclay concludes: “We are now in a position to see that Macklin is wrong to claim that dignity is a useless concept. Respecting persons and respecting their autonomy are not coextensive with treating them with dignity.” 



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October
14
 

If Trump moves on bioethics, what kind of commission should he create?

Today is October 14. Two hundred and sixty-seven days have passed since President Trump was inaugurated. And the United States still has no bioethics commission. Is that a problem in a year when CRISPR has generated controversy after controversy? A series of articles in the Hastings Center Report addressed this problem a few months ago.

Alexander Capron, a former president of the International Association of Bioethics, believes that a new commission should be created, but not necessarily a carbon copy of its predecessors, the first of which was created by the Nixon Administration in 1974.

Capron insists that a commission should try to achieve a “consensus”, the model for all previous commissions apart from the one created by George W. Bush. “A commission's only true power—the power of persuasion—is stronger with unanimity,” he writes. Its most valuable work is hammering out a consensus when none currently exists.

He also suggests that a commission should be created by Congress and appointed by the President, giving both the executive and the legislative branch a stake in its outcomes. The deliberations of a commission are meant to result in changes and these links will give it more authority.

A very different view was taken by Rebecca Dresser, who served on the President's Council on Bioethics under President Bush, which promoted discussion rather than consensus. “Although the search for consensus may be the most suitable approach for policy activities,” she writes, “it can lead to a bland and anemic version of bioethics.”

After her experience on the firing line, she regards herself as battle-hardened because bioethics sometimes became “fodder for partisan political debates”.

She raised some interesting questions about the bioethics establishment in the wake of her experience:

I learned that some people won't like it if you deviate from “the Great Bioethics Compromise.” This is the term Jonathan Moreno uses to describe the prevailing approach to United States’ oversight of science and medicine, which is to “[k]eep a close eye on scientific innovation for its societal implications, apply the brakes now and then as needed through regulations or guidelines or just the glare of public discussion, and let the bioethicists be the ones to analyze how all this is going.” Those comfortable with the Great Bioethics Compromise were vocal critics of a politically diverse Council that dared to depart from the status quo.

Her suggestion for the next commission – if one is ever appointed – are to be more inclusive, welcoming new voices, including “members with a range of backgrounds and political views” and people with practical knowledge of some of the issues under consideration. 



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October
14
 

The emerging technology of ‘synthetic embryology’

Although experimentation on human embryos is tightly controlled in the United States. American scientists may have found a way around this restriction. According to the MIT Technology Review, some scientists are creating embryo-like structures from stem cells.

Journalist Antonio Regalado says that there is a boom in “organoid” research. Stem cells are being used to create “clumps of cells that increasingly resemble bits of brain, lungs, or intestine” or even embryos. This emerging technology has been dubbed “synthetic embryology”.

Research on true embryos is enmeshed in America’s bitter disputes over abortion and is largely limited to surplus embryos from IVF clinics. This new technology will allow scientists to investigate embryo development and test drugs without overstepping any legal limits. Regalado writes”

Scientists at Michigan now have plans to manufacture embryoids by the hundreds. These could be used to screen drugs to see which cause birth defects, find others to increase the chance of pregnancy, or to create starting material for lab-generated organs. But ethical and political quarrels may not be far behind. “This is a hot new frontier in both science and bioethics. And it seems likely to remain contested for the coming years,” says Jonathan Kimmelman, a member of the bioethics unit at McGill University, in Montreal, and a leader of an international organization of stem-cell scientists.

At the moment, scientists are observing a 14-day limit; any embryos must be destroyed before 14 days. But this has always been an arbitrary constraint and some scientists complain if that if “synthetic embryos” are not embryos, they should be allowed to drop the time limit. 



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October
14
 

Gene of the week: divorce

Divorce does seem to run in families. Children whose parents were divorced have a higher risk of divorcing than those from stable families. The standard explanation is that the children absorbed attitudes towards marital commitment which normalised divorce for them.

So couples with rocky relationships are counselled to strengthen commitment and development weak interpersonal skills.

But all this could be a waste of time. Researchers from Virginia Commonwealth University (VCU) and Lund University in Sweden believe that there is a genetic component to divorce. In a study published in the journal Psychological Science, they claim that while biological children were more prone to divorce if their parents were divorce, this was not the case with adopted children.

"I see this as a quite significant finding. Nearly all the prior literature emphasized that divorce was transmitted across generations psychologically," Kenneth S. Kendler, of VCU, says. "Our results contradict that, suggesting that genetic factors are more important."

By recognizing the role that genetics plays in the intergenerational transmission of divorce, therapists may be able to better identify more appropriate targets when helping distressed couples.

"Previous studies haven't adequately controlled for or examined something else in addition to the environment that divorcing parents transmit to their children: genes," says lead author Jessica Salvatore, of VCU. "And our study is, at present, the largest to do this. And what we find is strong, consistent evidence that genetic factors account for the intergenerational transmission of divorce. For this reason, focusing on increasing commitment or strengthening interpersonal skills may not be a particularly good use of time for a therapist working with a distressed couple."



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October
14
 

Nine out of ten Quebec caregivers support MAiD for the demented – new study

A new study claims that nine out of ten Quebec caregivers want to extend the province’s Medical Assistance in Dying (MAiD) law to patients with dementia.

The study, presented by Université de Sherbrooke epidemiologist Gina Bravo at World Alzheimer’s Day conference in Montreal this week, involved 302 caregivers from across Quebec and a dozen Alzheimer’s chapters of the Fédération Québécoise des Sociétés Alzheimer. Bravo asked respondents if they support the idea of assisted dying for individuals suffering from dementia who are at the terminal state of their illness, who are showing signs of distress and who have an advance written directive.

According to Bravo, 91% of respondents supported extending the law to patients with dementia, while 72% of respondents said they were favourable to it even in the absence of a written directive.

Currently, MAiD is not permitted for patients who cannot make a request in a “free and informed manner”, thus excluding patients with dementia. In March, however, Quebec Health Minister Gaétan Barrette announced that a parliamentary commission will consider the merits of allowing patients with dementia to give “advanced consent” to medically assisted death.

Bravo said that that the purpose of the study was not “to vote for or against [the issue]”, and she acknowledged that “the difficulties of applying such a law [i.e. one that permits MAiD for demented patients] cannot be ignored.”



This article is published by Xavier Symons and BioEdge.org 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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October
14
 

Michigan mother jailed for refusing to vaccinate child

A 40-year-old Michigan woman has been sentenced to seven days jail after disobeying a court order to have her son vaccinated.

Rebecca Bredow, who describes herself as an “educated vaccine-choice mother”, was ordered by Oakland County Circuit Judge Karen McDonald in late September to have her child immunised; she had been taken to court by her ex-husband and the child’s father, James Horne, who told the court that Bredow had reneged on a previous agreement to have the child vaccinated.

Bredow deliberately ignored Judge McDonald’s order to have the child immunised, and was soon back in the County courthouse declaring that, "I would rather sit behind bars standing up for what I believe in, than giving in to something I strongly don't believe in”.

Judge McDonald ordered that parents be given equal custody of the child, and that the boy should be vaccinated while Bredow was in jail.

Bredow has since served her short sentence (she was released after five days, under special Oakland Country Jail rules). “It was the worst five days of my life pretty much,” she told reporters on Wednesday, “except for the fact that I just found out that he was vaccinated and I'm not going to get him back today.”

The Bredow case is the latest of a string of high-profile anti-vaxxer cases in America that have resulted in strong punitive measures against objecting parents.



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October
07
 

Will assisted suicide always provide a quick and gentle death?

The gold standard for human experimentation is a randomly-assigned double-blind placebo-controlled study. Unfortunately, organising such a study to assess the effectiveness of the lethal medications used for executions in the United States and for physician-assisted suicide (PAS) has significant ethical issues. We need to rely upon historical data.

In the latest issue of the Journal of Law and the Biosciences, Sean Riley, an end-of-life researcher currently studying in the Netherlands, reviews the patchy record of the drugs used in executions and PAS. He summarises his findings as follows:

The pervasive belief that these, or any, noxious drugs are guaranteed to provide for a peaceful and painless death must be dispelled; modern medicine cannot yet achieve this. Certainly some, if not most, executions and suicides have been complication-free, but this notion has allowed much of the general public to write them off as humane, and turn a blind eye to any potential problems. Executions or PAS have never been as clean as they appear, even with the US’s medicalization efforts during the 1980s.

He discusses several issues:

Supplier boycotts. Under pressure from anti-death penalty activists, pharmaceutical companies refused to supply prisons with lethal medications. Efforts to circumvent this by going to shady middlemen eventually failed. Most states have ceased to import the key ingredients needed for executions.

Price gouging for PAS drugs. Because of the drought of lethal medications for executions, the price of secobarbital or pentobarbital for PAS has skyrocketed. “Before 2012, patients would pay about $500 for a sufficient lethal dose of the drug, but by 2016, prices had inflated to figures upwards of $25,000.”

Compounding pharmacies. Faced with the huge cost of assisted suicide, prisons and patients began to turn to compounding pharmacies where pharmacists create the drugs from raw materials. “As the past 3 or so years have seen a dramatic increase in the use of compounded drugs,” writes Riley. “There has been a corresponding rise in ‘botched’ executions, though the secrecy laws have neutered most attempts to link failed executions to compounded drugs.”

The drugs made in compounding pharmacies risk being subpotent, superpotent, or contaminated. In Massachusetts a former pharmacist is on trial for supplying contaminated drugs which caused a nationwide outbreak of meningitis. Prosecutors told the court that he had used expired ingredients, falsified documents, neglected cleaning, failed to properly sterilize the drugs, shipped products before they were tested and ignored mould and bacteria in manufacturing areas.

Last-minute complications. It is difficult to define what a “botched execution” is, but the last moments of some prisoners were clearly agonising. And for complications with PAS, there is a lack of clear data. “According to data published by Oregon, 5% of patients experienced difficulties, such as regurgitation or seizures, after ingestion of the medication, since the inception of the law in 1997,” says Riley. However, in only 51% of the cases were the details reported. And “there are six reported instances where patients ingested the lethal medications, went unconscious, and awoke sometimes days later.”

Riley concludes that “The processes of death will always, to some extent, be a mystery. For now, whether a death is peaceful and painless can only be assumed.”



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October
07
 

British man with motor neurone disease loses fight for assisted suicide in UK court

A British court has once again supported a ban on assisted suicide. Noel Conway (see here for previous BioEdge stories), a 67-year-old with motor neurone disease, had appealed to the court to allow him to die through assisted suicide when his health deteriorated.

His legal argument was that the Suicide Act 1961, which sets out the law on assisted dying, is incompatible with Article Eight of the European Convention on Human Rights. His lawyers argued that the law should be changed to permit others to assist him to commit suicide without risking prosecution.

However, after reviewing most of the recent developments in the assisted dying debate over the past four decades, three justices of the High Court rejected his claim.  

Mr Conway was bitterly disappointed. “I am told the only option I currently have is to effectively suffocate to death by choosing to remove my ventilator, which I am now dependent on to breathe for up to 22 hours a day,” he said. “There is no way of knowing how long it would take me to die if I did this, or whether my suffering could be fully relieved. To me, this is not choice – this is cruelty.”

He believes that he will experience “unbearable suffering” and a “traumatic, drawn-out death” as a result of the judgment.

Andrew Copson, of Humanists UK, which has supported Mr Conway’s legal challenge commented:

“We are hugely disappointed at the decision of the high court today. It is simply wrong that those who are of sound mind but are terminally ill or incurably suffering are denied the choice and dignity to die at a time of their choosing.”

But Dr Peter Saunders, of the lobby group Care Not Killing, applauded the judgement.

“The safest law is the one we currently have, which gives a blanket prohibition on all assisted suicide and euthanasia. This deters exploitation and abuse through the penalties that it holds in reserve but, at the same time, gives some discretion to prosecutors and judges to temper justice with mercy in hard cases.”

“A change in the law is opposed by every major disability rights organisation and doctors’ group, including the BMA, Royal College of GPs and the Association for Palliative Medicine. These groups have looked at this issue on numerous occasions in detail and concluded that there is no safe system of assisted suicide and euthanasia anywhere in the world.”



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October
07
 

Religions and embryos

An special feature in the journal Development lists the attitude of various religions towards human embryos. Author William Neaves writes “How religions view the human embryo depends on beliefs about ensoulment and the inception of personhood, and science can neither prove nor refute the teaching of those religions that consider the zygote to be a human person with an immortal soul.”

Catholicism: Having a centralized government and a definitive teaching authority, the Catholic Church holds the most unified and consistent view, despite some contemporary dissidents. It believes that personhood begins with the fertilisation of an egg by a sperm.

Protestantism: “The decentralized nature of Protestant denominations militates against a consistent position on research with human embryos,” Neaves writes. “Some Protestants oppose this research, and their objection centers on the assumption that collecting cells from a blastocyst kills a human being.”

Buddhism. In general, Buddhists believe that “an embryo acquires personhood after implantation in a mother's uterus, and research may be conducted on human embryos in vitro if intended ‘…to help humankind’”

Hinduism. “Most Hindus believe that the beginning of personhood coincides with the occurrence of reincarnation at the moment of conception, and that the earliest human embryo deserves respect. However, Hinduism is intrinsically flexible, and the destruction of a human embryo can be justified under certain circumstances – for example, to save a mother's life.”

Sikhism. Like Hindus, Sikhs believe that “the beginning of personhood coincides with the occurrence of reincarnation at the moment of conception.”

Judaism. “The embryo is considered to be ‘mere water’ until the 40th day when a soul may take up residence in the developing body, but the Babylonian Talmud only attributes full personhood to a fetus when it is birthed. A younger embryo should be treated respectfully but not as a person, with increasing consideration given according to age. The older it is, the more compelling should be the reasons for ending its life.”

Islam. The Qur’an did not settle the time of “ensoulment” and with its multiplicity of traditions, Islam has no definitive view. Some authorities believe that it begins at 40 days after conception; others at 120 days. 



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October
07
 

Bioethics in Nobel for Literature

The 2017 Nobel Prize for Literature has been awarded to British-Japanese novelist Kazuo Ishiguro, one of the few laureates to deal explicitly with bioethical topics. His 2005 dystopian novel about cloning, Never Let Go, won a number of awards and was one of the TIME 100 Best English-language Novels from 1923 to 2005.The 2010 film of the same name was positively received by critics, but at the box office it was a fizzer. Admittedly, it is a sombre novel, though narrated with exquisite skill in gossamer prose – not exactly material for a Hollywood top of the charts.

The story is narrated by Kathy, a woman in her late 20s who looks after convalescing organ donors. As she prattles on about her days at Hailsham, an English boarding school for girls and boys, we begin to realise that something very creepy is going on at this school – which troubles the reader, but not Kathy.

The children, it turns out, are clones who are being raised to provide organs for their original. In their mid-20s or so, they begin to donate organs. They can’t live much longer than four operations and then they “complete”, the Hailsham jargon for dying. The clones are strangely accepting of their fate and very little is said about the outside world which has created the market in human organs. 



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October
07
 

Sperm bank to add criminal check and thorough psych assessment to screening process

A leading sperm bank, California Cryobank, has become the first in the industry to add a clinical psychological assessment and criminal background check to a standard donor screening process.

The donor sperm industry has traditionally operated without the use of a formal psychological screening component.

"We believe in robust screening as well as quality informed consent", says Cryobank Medical Director Jaime Shamonki. "Our screening process selects for the most committed, altruistic, and informed donors."

California Cryobank is also one of the first sperm banks to implement criminal background checks as a standard part of the donor screening process.

"We have heard from more and more clients in the last few years that psychological screening is something they would truly value. This is just one more way we can continue to help create happy, healthy families," adds Scott Brown, Director of Customer Experience.

One reason for Cryobank’s move may be a public relations disaster last year which dented the industry’s reputation. Xytec Corp, a sperm bank based in Atlanta which is even older than Cryobank, is being sued for misrepresenting the character of a donor whose sperm led to the birth of at least 36 children in Canada, the US and Britain. He was described on Xytec’s website as a man with an IQ of 160, an internationally acclaimed drummer and a PhD student in neuroscience engineering. In reality he was a convicted criminal with several mental illness diagnoses including schizophrenia, narcissistic personality disorder and grandiose delusions. 



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October
07
 

Cosmetic surgery clowning to be discouraged

The circus atmosphere of plastic surgeons donning costumes, dancing and juggling breast implants during live surgery videos on social media may soon change.

A first code of ethical behavior for sharing videos of plastic surgery on social media was recently published in the Plastic and Reconstructive Surgery Journal  as the foundation for ethical guidelines.

"This the first step in taking the circus tent down and developing ethical rules for making and sharing plastic surgery videos," said senior author Clark Schierle, of Northwestern University Feinberg School of Medicine. "There is increasingly vulgar content by a growing number of plastic surgeons that is not in the best interest of the patient."

Some plastic surgeons have gained large followings on Snapchat and Instagram by broadcasting live surgery videos that include theatrics such as dressing in costumes and dancing and flaunting removed body tissue such as abdominoplasty specimens. One entreated viewers to come for free booze and a DJ at a marketing event, while he was performing live plastic surgery.

A Miami-based, board-certified plastic surgeon was the first to post theatrical videos several years ago. Now copycat plastic surgeons in major metropolitan areas "are jumping on this bandwagon, trying to replicate his success," Schierle said. "The crazier, more obscene and edgy the better as far as grabbing attention on social media."

In one post, Schierle saw a plastic surgeon cradling an abdominal tummy tuck specimen in his arms like a baby and then used a Snapchat filter to put an "infant's" face on it. "This is inappropriate handling of human tissue for entertainment purposes," Schierle said.

“As board-certified plastic surgeons, I think we should have higher moral standards than a 13-year-old sexting with her boyfriend,” he told LifeHacker.

Finding the line between appropriate and inappropriate behavior isn't easy, Schierle said. "It's like pornography. I know it when I see it, but how do I define it?"

Many plastic surgeons question the ethics of broadcasts done more for the purposes of entertainment and marketing than education, the authors said, and have called for the development of more structured oversight and guidance in this area.

The surgeons are not filming the videos for educational purposes. "It's about notoriety," Schierle said. "It's about showing the most outrageous content to attract more viewers and build your business."

Even when surgeons obtain consent to post videos on social media, Schierle and Dorfman question the validity of the consent.

"The relationship between a doctor and patient still remains somewhat hierarchical," Schierle said. "The patient may feel coerced -- even if subconsciously -- to participate in being filmed in order to be a 'good patient.' There is an inherent power disparity."

Some patients may request to have their video shared on social media -- particularly those who sought out the surgeon based on his or her social media presence -- as a way to experience their own brief moment of fame, Dorfman said.

But patients risk their images being copied, manipulated and redistributed, as well as possible revelation of their identity. They may not realize that a video on Snapchat, which disappears in 24 hours, may be screenshot and posted on YouTube or any other website where it can live indefinitely, Dorfman said.

He calls for greater transparency about the risks involved including the permanency associated with posting videos on social media and the Internet.

There also is the risk to the patient of having a distracted surgeon. "Instead of focusing on providing the most efficient surgical procedure to help the patient, the surgeon is distracted by hamming it up for the camera," Schierle said.



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October
07
 

Children can write their own advance care directives in Victoria

In a world first, the Australian state of Victoria is allowing children of any age to write their own advance care directive that doctors are obliged to follow. The new ACDs, which come into effect in March next year, will allow a child to decide on their treatment preferences, provided he or she was competent at the time of making the declaration, and the statement was witnessed by a medical practitioner and one other witness.

If a child has made a valid advance directive in which they have included instructions to refuse a particular medical treatment, such as dialysis or chemotherapy, a health practitioner must not provide that treatment.

Up until now, laws around the world have given parents the final say in decisions about treatment options for minors. The new laws are controversial, and run contrary to many of the legal precedents on the decision-making capacity of minors.

Writing in The Conversation, health law expert Carolyn Johnston advocated for a collaborative approach to drafting ACDs for children:

“Parents want to protect their children and health-care practitioners want to do the best for their patients. Advance directives should be drafted as a collaboration between the child, health professionals and, ideally, parents. This will enable understanding of the possible treatment options, their benefits and harms, and the impact of refusing certain treatment, resulting in a meaningful and effective advance decision.”  

There has been significant debate amongst bioethicists about the “competency” of children when deciding about treatment options. 



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October
07
 

Your genes for sale: shouldn’t you get a return?

Personalised genetic testing has become increasingly popular with companies such as 23andMe offering a variety of tests that analyse a client’s genetic profile. There are, nevertheless, ethical concerns about business practices of several genomics companies.

Many of the genetic tests offered by genomics start-ups offer an assessment of one’s predisposition for age-related diseases such as Alzheimer's or Parkinson’s disease.

There are, however, laboratories across the country that are promising patients detailed information such as how they will respond to exercise, which foods they should eat, and even which types of wine they might prefer.

Dr Eric Topol, a cardiologist and professor of genomics at Scripps Research Institute in California, said there was a great potential value in consumer genomics tests, particularly with services like those developed by Geisinger, Invitae and Sema4 that are backed by strong data. But he cautioned that there was not enough evidence for many of the genetic claims being made about exercise and nutrition. He worries that many people would not be able to distinguish the services that are scientifically rigorous from those that are not.

“There’s this mixture of some that have real solid footing and then some that have zero footing,” Dr Topol told the New York Times.

Controversy has also arisen surrounding the sale of aggregated genetic data by genomics companies to researchers and the pharmaceutical industry. In 2015, for example, Forbes reported that Genentech paid $60 million for the whole genome sequencing data of 3000 customers of 23andMe with Parkinson’s disease.

Speaking with the New Scientist, University of Exeter genetics researcher Tim Frayling questioned whether consumers should receive a “micropayment” in exchange for the use of their genetic data:

“I’d hope to have a robust marketplace that gives you the opportunity to sell your own data,” he says. “If a drug [developed using your genetic information] gets sold, there’s no reason why you shouldn’t receive a micropayment.”

23andMe allow clients to opt-in to having their data used in research, and currently 80% of clients do. 



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October
07
 

Embryo gene-editing in Canada: Ethicists urge caution

Two Canadian ethicists have defended their country’s moratorium on embryo gene-editing experiments, arguing that it reflects international consensus on the ethics of germline editing.

Writing in Impact Ethics, Francois Baylis of Dalhousie University and Alana Cattapan of the University of Saskatchewan describe current Canadian law -- which prohibits altering “the genome of a cell of a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants” -- as in line with current “international standards”.

“the prohibition on editing the human genome is consistent with international standards...Article 13 of the Oviedo Convention stipulates that: “An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants””.

Baylis and Cattapan also argue that extending public consultation is needed before we permit the use of experimental technologies:

“even if international standards were different, the new possibilities for heritable modification require ongoing, meaningful public dialogue about a wide range of ethical and social issues...we are a very long way away from being ready to amend [the law] to remove the prohibition of making genetic alterations that can be passed on to future generations.”



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October
07
 

An AI alternative to organised religion

Tired of organised religion? Maybe you should join a Silicon Valley religious start-up.

Former Uber exec Anthony Levandowski, for example, has registered a non-for-profit religious organisation in California, going by the name of Way of the Future. According to Wired, Way of the Future aims to “develop and promote the realization of a Godhead based on artificial intelligence and through understanding and worship of the Godhead contribute to the betterment of society”.

Levandowski’s De ex Machina religion is just one of several quasi-religious organisations now operational in the Californian tech belt.

“The church does a terrible job of reaching out to Silicon Valley types,” says Christopher Benek, a pastor in Florida and founding chair of the Christian Transhumanist Association. Benek argues that  AI can participate in Christ’s redemptive purposes,” he said, by ensuring it is imbued with Christian values. “Even if people don’t buy organized religion, they can buy into ‘do unto others’.”

Self-proclaimed transhumanist visionary Zoltan Istvan argues that religion and science converge conceptually in the singularity.

“God, if it exists as the most powerful of all singularities, has certainly already become pure organized intelligence,” he said, referring to an intelligence that “spans the universe through subatomic manipulation of physics”.



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September
30
 

Are drug addicts responsible or helpless victims of an illness?

Who is responsible for drug addiction: your brain or you? This momentous question will be decided in the Massachusetts Supreme Judicial Court soon.

Addict Julie Eldred violated her parole by taking drugs. A judge derided her plea for compassion as “just a bunch of excuses” and sent her off to jail. The same thing happened again three years later when she again took drugs while on parole.

Now, according to a report in the Boston Globe, she is suing the state government, alleging that “the court violated her constitutional rights by ordering her to remain drug free, arguing that her substance use disorder makes it virtually impossible for her to control her drug use through sheer will”.

Her lawyers maintain that:

“Drug addiction, we now know, is a chronic brain disease whose hallmark feature is an inability to exert control over the impulse to use drugs despite negative consequences. Punishing relapse is ‘clinically contradicted.’ As this case makes clear, it is also morally indefensible.”

The response of the State Attorney-General has been to paint drug addiction as a matter of choice. It is wrong to compare addiction to diseases like asthma, hypertension or cancer. “The drug free and testing conditions of probation are constitutional because they are based on the proven assumption that most people with drug addiction retain the ability to exercise choice,” wrote Assistant Attorney General Maria Granik.

The medical profession is divided, but the American Medical Association and the Massachusetts Medical Society (which publishes the New England Journal of Medicine) believe that addiction is a chronic illness caused by a number of environmental, behavioural and biological factors.

Other doctors argue that addicts respond to incentives – like the threat of being jailed or losing a job. “The threat of being incarcerated, or re-incarcerated or sanctioned in some way, gives the addict an extremely powerful incentive to stay clean,” wrote three psychologists and a psychiatrist in an amicus brief.

Moreover, the thinking behind these claims, which often rests on what we have termed “unrefined biological determinism,” will support claims that the very concept of responsibility that is foundational for criminal law and our society is unjustified. We are mindful of the dangers of catastrophic thinking, but we fear that granting the probationer’s petition may have the effect of starting to pry open the lid of Pandora’s Box.



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September
30
 

Medical staff punished after privacy breach in Pennsylvania hospital

Respect for patients’ privacy is a work in progress, to judge from an incident in UPMC Bedford Memorial Hospital, in Pennsylvania. On December 23 last year surgeons were removing a “foreign body” from the genitals of a female patient. Somehow other staff were notified of this novelty and the operating theatre became so crowded that “it looked like a cheerleader type pyramid,” according one witness quoted in a state government report.

Worse still, operating room staff took pictures with their mobile phones and circulated them to other staff.

The Pennsylvania Department of Health declared that the hospital had violated several standards:

  • Failing to protect a patient's confidentiality and privacy
  • Allowing people not involved in the patient's care into the operating room
  • Allowing them to use personal devices to take pictures of the patient

As a result of an investigation, one doctor was suspended for 28 days and another for a week. The surgical services nursing director was dismissed.

When the incident came to light, hospital staff tried to excuse it. Mobile phones had to be used because the operating room camera was broken. It then turned out that it was not broken, but it was complicated to use.

On staff member recounted "it was a couple days before Christmas, I received a picture text on my phone from Anesthesia, made a comment and moved on. We do pass on interesting stuff..."

Bioethicist Craig Klugman commented on the issue in the bioethics.net blog:

... taking pictures of patients without their consent and using their vulnerable bodies as a source of amusement or entertainment is a gross violation of ethics. A patient is not a carnival sideshow exhibit. This is a human being who has placed her or his trust and well-being in the hands of the medical professionals. There is an ethical and legal expectation of confidentiality. These actions are nothing less than a violation of trust...

While having a policy and providing education are necessary steps, they are not sufficient. The culture of medicine which tolerates seeing patients as objects is the core of the problem and needs to change.



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September
30
 

Medical aid urgently needed in Myanmar

The persecution of the Rohingya population in Myanmar has a decades long history. Yet alleged ethnic cleansing by military forces in recent weeks has prompted international observers to call for immediate international action and massive humanitarian support.

The notorious Tatmadaw national army has allegedly burnt hundreds of Rohingya villages in the past month, leading more than 500,000 residents of the region (half of them children) to flee over the border to Bangladesh. Those who have crossed the boarder lack basic food and medical aid, and those still in the country face a dire threat from the hostile military forces. The Rohingya remaining in Rakhine have been cut off from crucial humanitarian aid since August 25, when Rohingya militant raids triggered the military backlash that plunged the region into crisis.

The Muslim Rohingya in Rakhine are denied citizenship and are instead branded "Bengalis" - or illegal migrants who do not belong in the Buddhist-majority country. Even before tensions escalated between the military and Rohingya insurgents, Muslim communities in Rakhine were receiving regular threats from local Rakhine Buddhists to leave the area.

The editors of The Lancet called this week for humanitarian support to be “urgently deployed to protect the very existence of a ravaged Rohingya population”:

“Bangladesh must be supported to manage the major humanitarian catastrophe that is unfolding with risks of infectious disease outbreaks, lack of basic water and sanitation, and exploitation of the population, especially of women and children (around 1000 unaccompanied minors).”


This article is published by Xavier Symons and BioEdge.org 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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September
30
 

US Congress ponders assisted suicide

A resolution condemning assisted suicide has been introduced into the US House of Representatives. Both sides of the debate treated it as a milestone, but it does not have the force of law and merely expresses the “sense of Congress”.

The resolution, House Concurrent Resolution 80, reads:

 ... assisted suicide (sometimes referred to as death with dignity, end-of-life options, aid-in-dying, or similar phrases) puts everyone, including those most vulnerable, at risk of deadly harm and undermines the integrity of the health care system.

The resolution goes on to support this contention by referring to the need for palliative care and the tragedy of suicide. It insists that the government has a right and a duty to legislate about end-of-life care:

there is no constitutional right to assisted suicide, that the Government has a legitimate interest in prohibiting assisted suicide, and that such prohibitions rationally relate to “protecting the vulnerable from coercion” and “protecting disabled and terminally ill people from prejudice, negative and inaccurate stereotypes, and ‘societal indifference;’”

It also slams lack of transparency in the states where assisted suicide is legal:

there is an astounding lack of transparency in the practice of assisted suicide to the extent that State health departments and other authorities admittedly have no method of knowing if it is being practiced within the bounds of State laws and have no funding or authority to make such a determination...

[and] some State laws actively conceal assisted suicide by directing the physician to list the cause of death as the underlying condition without reference to death by suicide;

Supporters of assisted suicide were horrified at the move. "Even though the resolution would not have the force of law, we urge members of Congress to reject it. It contains false statements, and disregards their constituents who strongly support this end-of-life option," said Compassion & Choices president Barbara Coombs Lee, who coauthored the nation's first medical aid-in-dying law in Oregon in 1994.



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September
30
 

40 years after, Scottish mother still mourns the son a hospital stole from her

Forty years later, a Scottish mother is still mourning her son who died at 7 days. The death of Lydia Reid’s son Gary in 1975 was surrounded by mystery. He was sickly at birth and died in intensive care. She never had a chance to hold him and she specifically refused a request for an autopsy.

When he was buried, the undertakers initially refused to allow her to see him in his coffin. When they relented, she said that it was not her baby. She carried the coffin to the burial and thought that it was too light. But the authorities dismissed her concerns and said that she had post-natal depression.

In the 1990s the Alder Hey Hospital scandal broke and Ms Reid learned that government hospitals in England had been retaining organs routinely from dead infants without tell the parents. She became a leader in a movement to uncover the truth about what happened in Scotland. It turned out that government hospitals had unlawfully kept about 6,000 organs and tissues between 1970 and 2000, many of which belonged to children.

But what about her own son? She finally received permission to exhume Gary’s coffin. And as she suspected, there were no human remains inside, just a misspelled name tag, a cross, a hat and a shawl. Ms Reid is devastated. “"Even if he has been incinerated I want to know," she told the BBC. "Even if he is lying in a jar in a hospital somewhere I want to know. If it is possible to get my son back, I want my son back. If it is not possible then at least tell me and let me have peace."

A scientist who investigated the scandal in England told the Washington Post that some pathologists were puzzled by the anguish felt by parents. They could not understand why they “got so bothered by a corpse.”

“The remains were important to some people because of faith or they simply wanted their child buried whole,” she said. “Cold rationality only takes you so far,” she said of the medical community. “You have to take into account how these individuals feel.”



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September
30
 

Costa Rica becoming hub for global organ trafficking

A doctor being arrested in 2013 / The Costa Rica Star 

A trial of four doctors and their accomplices in Costa Rica, one of the main countries for international medical tourism, is opening up a window on global organ trafficking.

The cost of a kidney transplant by one of the doctors appears to have been about US$140,000. This had to be split between the doctors, the hospitals, the donors and the brokers.

The business came unstuck in 2012 when Ukrainian police found a Costa Rican phone number among the contacts of two Ukrainian brokers whom they had arrested. When Costa Rican police investigated, they found that some kidneys were being “donated” to rich Israelis. Costa Rican donors were paid about $17,400. They were recruited by other donors who were paid a fee of $1000 for every kidney.

A Greek businessman with a pizza shop across from the Calderon Guardia hospital acted as a middleman between the doctors and the donors. The operations were carried out in two small private hospitals, Clinica Biblica and Clinica Catolica.

Earlier this year human trafficking expert, Luz Estella Ortiz-Nagle, a lawyer from Colombia, told the Costa Rican daily La Nación:

“Costa Rica may be transforming from a tiny player in the global organ trafficking trade into an epicenter for illegal organ trafficking, in large part due to corruption that has helped fuel a sophisticated transplant tourism industry as well as the global imbalance between the limited supply of kidneys and the high demand for transplants…Corrupt officials in various sectors is an essential aspect for these networks to operate successfully, given the breadth of their operations.”



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September
30
 

Coma victims, PVS patients, and waking the dead

A 35-year-old man who had been in a vegetative state for 15 years after a car accident has shown signs of consciousness after neurosurgeons implanted a nerve stimulator into his chest.

The findings, reported this week in the journal Current Biology, suggest that “vagus nerve stimulation” (VNS)—a treatment already in use for epilepsy and depression—can help to restore consciousness even after many years in a vegetative state.

The researchers, based in France, provided the unidentified patient with one month of vagal nerve stimulation. According to their study, the patient's attention, movements and brain activity significantly improved following ongoing stimulation. The man began responding to simple orders that had been impossible before. For example, he could follow an object with his eyes and turn his head upon request. His mother reported an improved ability to stay awake when listening to his therapist reading a book.

After stimulation, the researchers also observed responses to "threat" that had been absent. For instance, when the examiner's head suddenly approached the patient's face, he reacted with surprise by opening his eyes wide.

"Brain plasticity and brain repair are still possible even when hope seems to have vanished”, Angela Sirigu, a researcher at Institut des Sciences Cognitives Marc Jeannerod in Lyon and co-author on the study, told reporters.

Bioethicists are yet to comment on the research, though there would seem to be several ethical issues surrounding bringing patients back to consciousness.

******

In addition to this study, several stories of comatose patients regaining consciousness have received media attention in recent weeks. One widely reported case involved a 47-year-old Arizona woman who regained consciousness following the withdrawal of life-support; she had been in a coma for several days after falling unconscious due to blood clots in her leg. Another case involved a 61-year-old British man who woke up just hours before life support was to be switched off. The man had been in a coma for a number of weeks following a blood clot and intracranial bleeding. 



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September
30
 

Organ donation and recipient information

How can we solve the shortage of organ donors?

Clearly there’s no easy answer. But two bioethicists have a very practical suggestion: why not provide more detailed information to potential donors about those who need an organ transplant?

Writing in the Journal of Medical Ethics, David Shaw (University of Basel) and Dale Gardiner (Nottingham University NHS Trust) argue that providing real-life stories of the benefits of organ donation could greatly increase the likelihood of donation; the researchers propose that a detailed leaflet be given to patients and families who are making decisions about organ donation. This would help to overcome the moral distance between donors and recipients, and increase an awareness of the variety of benefits that organ donation yields:

“Providing more detailed information about recipients...may increase the consent rate by helping to reduce [the] moral distance from those who might benefit from donation...This information could include a description of what it is like to wait for an organ, how donation benefitted them and also stories from families of those who donated. Providing this information could also help heighten awareness among staff of the importance of donation. We would not propose providing details of the actual recipients of organs from a given patient, but instead providing a representative sample of those who could benefit, or have benefited.”  

Shaw and Gardiner are not unaware of the risks of coercion that come with providing emotive information to patients and families; these individuals are already in a distressed state and may feel pressured by information that implies an obligation to donate. Yet the authors suggest that generic exemplar cases would not induce distress as much as details of people currently on the waiting-list would. 



This article is published by Xavier Symons and BioEdge.org 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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September
30
 

Ireland to vote on abortion in 2018

Ireland will vote in 2018 on whether to keep its controversial constitutional abortion restrictions, which currently prohibit pregnancy terminations unless there is a real and substantial risk to the life of the mother.

Prime Minister Leo Varadkar announced the 2018 referendum on Tuesday, saying that the issue requires “well-informed public debate” and “careful consideration by the people”.

While polls suggest that Irish voters are in favour of allowing abortion in cases of rape, there is a strong opposition to allowing abortion on demand. According to a 2015 Irish Times Poll, “where the public drew the line was in allowing abortion on request (67 percent against) or if sufficient financial or family supports are not in place (68 percent against)”.

Ireland is not the only jurisdiction having its abortion laws questioned. Jeremy Corbyn’s Labour Party said in its 2017 manifesto that it would seek to broaden access to abortion in Northern Ireland, where similar restrictions exist. 



This article is published by Xavier Symons and BioEdge.org 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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September
23
 

Major US doctors group opposes physician-assisted suicide

The American College of Physicians, the second-largest physician group in the United States with 152,000 members, has declared that physician-assisted suicide is unethical.

The ACP takes a forthright stand with supporting appendicies covering most of the arguments for and against physician-assisted suicide (PAS). Its conclusion is:

The ACP does not support the legalization of physician-assisted suicide, the practice of which raises ethical, clinical, and other concerns. The ACP and its members, including those who might lawfully participate in the practice, should ensure that all patients can rely on high-quality care through to the end of life, with prevention or relief of suffering insofar as possible, a commitment to human dignity and management of pain and other symptoms, and support for families. Physicians and patients must continue to search together for answers to the challenges posed by living with serious illness before death.

In a sense, the ACP position paper is very “traditional” in its concerns and arguments. It even jibs at woolly terminology used in the debate:

Terms for physician-assisted suicide, such as aid in dying, medical aid in dying, physician-assisted death, and hastened death, lump categories of action together, obscuring the ethics of what is at stake and making meaningful debate difficult; therefore, clarity of language is important.

and it endorses concerns about “slippery slopes”, even though this is often ridiculed by supporters of PAS:

research suggests that a “slippery slope” exists in jurisdictions where physician-assisted suicide and euthanasia are legal. 

The position paper asks whether the goal of medicine is the elimination of all suffering:

Just as medicine cannot eliminate death, medicine cannot relieve all human suffering; attempting to do so ultimately leads to bad medical care.

It also points out that physicians gain power when PAS is legalised – it could be viewed as a return to paternalism. And it suggests that legalisation neglects other priorities: “advocating for physician-assisted suicide where there is no general right to health care and access to hospice and palliative care services is limited, especially in an era of health care cost containment, is ironic.”

Would legalisation change the ethics of PAS for doctors? The ACP says No:

Despite changes in the legal and political landscape, the ethical arguments against legalization of physician-assisted suicide remain the most compelling. We are mindful that ethics is not merely a matter for a vote. Majority support of a practice does not make it ethical. Medical history provides several cautionary examples of laws and practices in the United States (such as racial segregation of hospital wards) that were widely endorsed but very problematic.



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September
23
 

Bioethicists: get rich quick!

Bioethics is a career in which financial rewards do not figure prominently. However, if you have made significant contributions to the fieild, here’s your chance to win US$1 million. One of the three 2018 Dan David Prizes will be awarded to “an outstanding individual or organization in any field of the humanities or social sciences who have transformed our understanding of the moral and ethical significance of biological and medical innovations in our times.”

The Dan David Prize is an unusual, but lucrative, prize headquartered at Tel Aviv University which promotes “innovative and interdisciplinary research that cuts across traditional boundaries and paradigms. It aims to foster universal values of excellence, creativity, justice, democracy and progress and to promote the scientific, technological and humanistic achievements that advance and improve our world.”

It is awarded in three different time dimensions: past, present and future. Each year features different topics. The 2018 prize for the “present” will be in bioethics.

There is a catch, however. Ten percent of the prize must be donated to postgraduates in order to enrich the field.

The Prize was inaugurated in 2001 by Romanian-born Israeli businessman and philanthropist Dan David. Past laureates include: Yo-Yo Ma, Tom Stoppard, Al Gore, Tony Blair, the Coen Brothers, Robert Conquest and Marvin Minsky.

Nomination forms are available here



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September
23
 

British childbirth doctors back decriminalised abortion

The professional body representing British obstetricians and gynaecologists has chosen to support the decriminalisation of abortion. The ruling council of the Royal College of Obstetricians and Gynaecologists (RCOG) voted to change the College’s position from neutrality to support.

While abortion-on-demand is effectively legal in Britain, sections 58 and 59 of the Offences Against the Persons Act 1861 still remain on the books. Occasionally doctors are hauled before courts if they have not observed all the regulations.

Supporters of the change argue that it is more symbolic than practical, as all of the regulations would remain in place, such as a 24-week limit and the need for two doctors to sign off on the procedure.  

This brings the RCOG in line with two other major medical bodies who have backed decriminalisation, the British Medical Council and the Royal College of Midwives.

The RCOG resolution says:

“The RCOG supports the removal of criminal sanctions associated with abortion in the UK. We believe the procedure should be subject to regulatory and professional standards, in line with other medical procedures, rather than criminal sanctions. Abortion services should be regulated. However, abortion – for women, doctors and other healthcare professionals – should be treated as a medical, rather than a criminal, issue.”

Some members of the RCOG vigorously protested the change in policy. They pointed out that the members had not been consulted and that the change had been decided by the 33 members of the council. A letter signed by 650 medical professionals declared:

'It is completely unacceptable that all members of the RCOG have not been given the opportunity to vote on this significant change in policy and you have refused to release the wording of the motion until after the general council have voted on this motion. As doctors and medical students, we object to this new extreme position being forced upon members of the RCOG.

'We represent a variety of positions on the issue of abortion, but believe this motion is out of keeping with both our duties as responsible professionals and the expressed wishes of British women with regards to the legality and regulation of abortion. This move to introduce a radical abortion law is being promoted by a small group of campaigners with extreme views on abortion.'



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September
23
 

Is a defence of female genital cutting possible?

Female genital mutilation (or circumcision, or cutting) is reviled as one of the most egregious violations of human rights. But hundreds of millions of women have undergone some of form of FGC and there is fierce resistance to eliminating the traditional practice. Is it possible to reconcile it with human rights?

Writing in the journal Developing World Bioethics, a German bioethicist teaching in Lithuania, John-Steward Gordon, of Vytauto Didziojo University, believes that a compromise is possible. He contends that “one form of FGC, the removal of the clitoris foreskin, can be made compatible with the high demands of universal human rights”.

This depends, of course, on whether one regards human rights as absolute and their application as inflexible. Gordon insists that cultural background must be taken into account:

After all, human beings are not islands; on the contrary, their lives are deeply embedded in the social settings of their communities. The surrounding society's view of a person – e.g., a woman who has been circumcised and is therefore respected in her society – is of utmost importance for that person's self-conception. To deny this point is to ignore the enormous influence of society on individuals.

In other words, lack of FGC could severely handicap a woman in some cultures, both personally and socially.

The young girls themselves often want to be circumcised because they do not want to be left behind socially. They want to become full members of the tribe, share this experience with their friends, and become respected by other tribe members as a ‘real’ woman, even though the path to get there may be associated with great pain and even life-threatening circumstances.

However, Gordon does not believe that any and all forms of FGC are compatible with human rights. He sets down several criteria:

  • There must be individual informed consent, and not just consent from a girl’s parents
  • Some forms of FGC are such a severe risk to health that they should be actively discouraged through education, social pressure, regulation, and prohibition
  • All FGC should be carried out by medically-trained experts
  • The instruments should be disinfected and anaesthesia should be available
  • There should be no social-political pressure and a female who refuses FGC should not be disadvantaged

Gordon is not arguing that FGC is good. He believes that it should not be practiced at all. But he says that absolutist notions of human rights have to be tempered by respect for cultural traditions. It is a controversial thesis; he can probably expect some fireworks. 



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September
23
 

Spanish researcher snagged in stem cell research fraud

The biggest-ever fraud in Spanish science is coming to light – and like other recent frauds, it centres on stem cell research.

Earlier this week the journal Molecular and Cellular Biology retracted a 2003 paper by Susana Gonzalez, an experienced researcher at the National Center for Cardiovascular Research (CNIC) in Spain. It explained in a brief note: “After publication, this article was found to have problematic figures. Digital experts have informed us that some of the published data in this paper were very likely digitally manipulated.”

This is the fifth paper by Gonzalez which has been retracted. Other retracted publications have appeared in Nature Communications, Cell Cycle, and Nature.

Gonzalez has been dismissed from the CNIC and has lost a huge EU research grant, after publishing in some of the world’s leading journals. According to the newspaper El Pais (as reported in Retraction Watch):

In 2014, the European Research Council awarded her a Consolidator Grant, reserved for the elite of European science and worth two million euros. This followed her success in getting mice with life-threatening heart failure to make a remarkable recovery. Her experiments opened the door to the rejuvenation of the heart in old or ailing people.

The Spanish media is describing the succession of retractions as an international scandal, as the 2003 paper in Molecular and Cellular biology was based on work that Gonzalez at Memorial Sloan Kettering Cancer Center in New York. A sixth paper, in the journal Cancer Research, is also being investigated.

According to the newspaper El Pais, “everyone” knew that something was fishy about Gonzalez’s research while she was working at the National Centre for Cancer Resarch in Madrid (CNIO). But other researchers expressed their astonishment at the revelations. One colleague told El Pais: “I was a witness of how hard Susana worked in those years. She out everything she had into her projects. I know that this was always the case wherever she worked. Her dedication to her professional work is unquestionable.”   



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September
23
 

5% of Japanese babies from IVF

The latest figures show that 1 in 20 Japanese babies born in 2015 began life in an IVF clinic.

According to a survey by the Japan Society of Obstetrics and Gynecology (JSOG) there were a record 424,151 IVF procedures in 2015, resulting in 51,001 births, also a record.

From 1983, when IVF was first performed in Japan, to 2015, 482,600 children have been born with the procedure.

About 40% of women who go through IVF are over 40 nowadays even though the chance of having a baby is low – 9.1% for 40-year-olds and 4.5% for 42-year-olds.

Infertility treatment is a key element in the Japanese government’s strategy to raise the birth-rate from 1.44 to 1.8 by 2026. The population is decreasing every year at the same time as the number of retired people increases. 



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September
23
 

20 years of assisted suicide in Oregon

Oregon’s Death With Dignity Act (DWDA) is the benchmark for proposals for assisted suicide legislation around the world. Peter Singer cites it in a recent article supporting assisted suicide in the Australian states of Victoria and New South Wales. So the latest statistics from Oregon – 20 years after it was legalised in 1997 – are carefully scrutinised.

An article published this week in Annals of Internal Medicine surveys these two decades. In this time, 0.2% of deaths in Oregon were attributable to physician-assisted suicide. The number is small, but it is increasing steadily. According to a report in Medscape, “DWDA death rates showed relative increases of 14% each year from 1998 to 2013 and 36% annually from 2013 to 2015. Although DWDA deaths appeared to level off in 2016, it's unclear whether that decline represents a change in trends or a temporary drop, as occurred in 2013.”

The reasons for requesting help in dying have remained relatively constant. Pain was not a major factor.

"I can't tell you why [the increase] is happening, whether it's that more people are aware of it, changes in social norms or something else," said the author of the article, Katrina Hedberg,

of the Oregon Public Health Division, but "the people who have participated are pretty much the same as they were initially."

Medscape summarised the results:

“nearly all (96%) of those requesting DWDA prescriptions were white, a majority (72%) had some college (DWDA rates increased with educational attainment), and just over half (52%) were men. Their median age was 72 years, compared with a median age of death at 76 years among Oregonians who died of the same underlying illnesses without DWDA prescription.

“The patients' primary reasons for seeking DWDA prescriptions were a loss of autonomy, cited by 91%, and a decreasing ability to participate in enjoyable activities, cited by 89%. Just over a quarter (26%) cited pain, and 4% cited finances.”



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September
23
 

Assisted suicide debated in Australia

While currently overshadowed by an even more contentious debate over same-sex marriage, proposals for legalising assisted suicide are bubbling away in Australia.

This week, bills were introduced in the states of Victoria and New South Wales, each of them described as having the strongest safeguards ever against abuse. Victorian Premier Daniel Andrews said that "This legislation will deliver the safest model in the world, with the most stringent checks and balances.” And in NSW, parliatmentarian Trevor Khan said his private member’s bill was "the most safeguarded process of any voluntary assisted dying scheme presently available in the world".

Supporters of assisted suicide are lobbying hard. A survey in August, commissioned by Dying With Dignity NSW, found that 73% of Australians support voluntary assisted dying. However, the poll was conducted online and the question was loaded: “If someone with a terminal illness who is experiencing unrelievable suffering asks to die, should a doctor be allowed to assist them to die?”

Euthanasia is one of the chief interests of Australia’s best-known bioethicist, Peter Singer. He wrote a strong defence of legalisation for The Guardian. Twenty years of experience in Oregon, he wrote, has shown that safeguards are working. Most of the opposition is due to religious folks who have no business bring their dogmas to the public square:

Objections to legalising assistance in dying come mainly from those with religious beliefs contrary to this practice. To them I would say that, just as with same-sex marriage, if they do not want something for themselves, they are free to avoid it. But we live in a pluralistic society. Not everyone holds religious views, and many who are religious do not accept that it is always wrong to assist someone to die. I cannot see why the minority who have religious objections to voluntary assistance in dying should try to deny it to others who do not share their beliefs.

One of the world's leading experts in medical law, Margaret Somerville, attacked the proposed legislation, also in The Guardian. She rang alarm bells over safeguards for the vulnerable:

The risks and harms to society include damage to the shared values that bond us as a society and to our society’s “ethical tone”. We can’t judge the ethical tone of a society by how it treats its strongest, most privileged, most powerful members, but by how it treats its weakest, most vulnerable and most in need. Dying people belong to the latter group. With euthanasia we offer them death instead of loving care.

The outcome of the bills is far from certain. The results will not be known for weeks or possibly months. 



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September
23