January
14
 

President Trump is in ‘excellent health’

Like voters everywhere, Americans like healthy leaders. So the reassuring news that their President is "excellent health" was headline news this week. After a three-hour exam with military doctors at the Walter Reed Military Medical Centre, the White House physician, Ronny Jackson, said that it had gone “exceptionally well”. He will give a media briefing on Tuesday.

On the other hand, the news is not surprising. During the 2016 election campaign, Hillary Clinton’s fainting fit at a 9/11 ceremony in New York became another rod for her back, while Trump’s personal doctor declared that he would be "the healthiest individual ever elected to the presidency".

The idea of releasing personal health data raises some interesting bioethical questions. Does a President have a right to medical privacy, like other citizens?

A lot could ride on this. If Mr Trump were deemed unfit to carry out his weighty responsibilities, he could be removed from office under the 25th Amendment to the Constitution.

The “excellent health” which he is said to enjoy presumably covers only his physical health. Trump’s foes find excuses on a weekly basis to question his mental health. This week he allegedly asked at a meeting of US lawmakers “What do we want Haitians here for? Why do we want all these people from Africa here? Why do we want all these people from shithole countries?”

The President denied saying this, although he admitted that he used “strong” words.

The characteristically impulsive and provocative language have stirred some psychiatrists to denounce him as psychologically unstable, possibly in the early stage of dementia, and unfit for office. However, Mr Trump is unlikely appear in any of their consulting rooms for a psych check. 



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January
14
 

Rebuilding the tarnished image of utilitarianism

How utilitarian are you? Leading bioethicists at Oxford University, including Julian Savulescu, have published a nine-question survey which allows you to identify whether “You’re not very utilitarian at all.” or whether “You might be Peter Singer”. )Click here to take the survey at the Practical Ethics blog.)

The team at Oxford’s Uehiro Centre developed the survey, which is called “the Oxford Utilitarianism Scale”, in part, to help restore the badly dinted image of utilitarian thinking amongst ordinary people (although the proportion of those who have opinions on utilitarianism tout court is likely to be very small).

The philosophy of Jeremy Bentham and John Stuart Mill has come in for a battering in recent years. It is associated with university assignment about “trolley problems” which involve killing people tied to railway tracks, with psychopaths and Macchiavellian thinking. The Oxford team admits in an article published in the journal Psychological Review that:

Utilitarianism tells us to impartially maximize the aggregate well-being of everyone—and that we must severely harm or even kill innocent people if doing so is needed to achieve this overarching moral ideal.

This seems rather harsh, not to say inhuman, to the protesters at some of Peter Singer’s public lectures. As Savulescu reports, John Paul II’s devastating put-down was: “Utilitarianism is a civilization of production and of use, a civilization of ‘things’ and not of ‘persons,’ a civilization in which persons are used in the same way as things are used.”

 However, in recent years, Singer has been promoting another face to utilitarianism: “impartial beneficence”, which leads to “effective altruism”.

In a blog post on Practical Ethics, Savulescu draws upon the traditional language of Christian morality to describe the positive altruistic core at the heart of his philosophy:

There are two other features of utilitarianism that are often neglected. First, it compels us to do as much good as we can in the world—a much more positively oriented aim—while treating each of us in exactly the same way. So when I ask, “What is the right thing for me to do?”, my own wellbeing counts no more (or less) than anyone else’s. So, if I could give a kidney and save someone else’s life without putting my own life at equal or greater risk, I should give a kidney. This is very demanding. And if I do it, admirable—maybe saintly.



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January
14
 

Quebec nurses back euthanasia for the demented to the hilt: survey

An overwhelming majority of registered nurses working in Quebec nursing homes support euthanasia for dementia patients who have left a living will, researchers from Canada and the Netherlands. In an article in the journal Geriatric Nursing.

Euthanasia is legal in Canada, but only for patients who are competent, even if they had expressed a request for “medical aid in dying” in their lucid moments. However, this restriction is under pressure. After a man killed his demented wife, the Quebec Minister of Health and Social Services asked experts to study whether MAiD could be provided for patients with advance directives.

Although only doctors are able to euthanize patients, the researchers point out that “Given their unique experience and expertise, nurses' voice must be taken into account in deciding whether or not to modify the current legislation to give incompetent patients access to MAiD.”

Five hundred and fourteen nurses were surveyed; 219 responded. Of these, “83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.”

Just as interesting as the nurses’ attitudes towards incompetent patients was their feelings about how they would like to be treated themselves should they become demented. If diagnosed with Alzheimer’s, 79% said that they would make a formal request to die. If a love-ones were diagnosed, 65% would call a doctor to euthanise them (provided they had left a request). 



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January
14
 

Some Canadians unhappy with restrictions of euthanasia legislation

Canada legalised euthanasia and assisted suicide less than two years ago, but already there are complaints that the legislation is not flexible enough and allows faith-based facilities to stymie the intent of the legislation.

In Quebec, the Superior Court will begin hearing a constitutional challenge to the federal law by two patients, Jean Truchon, 49, and Nicole Gladu, 71, who suffer from incurable degenerative diseases.

According to CTV News Montreal, “Both are dependent on others and say they are miserable and want control of their end of lives. [But] Neither qualifies for the act under federal or provincial law, because their deaths are not ‘reasonably foreseeable’ and they are not at the end of their lives.”

They content that eligibility requirements for euthanasia are overly restrictive.

And in British Columbia, a doctor has been accused of sneaking into a nursing home which does not permit euthanasia on its premises in order to euthanase a patient. Louis Brier Nursing Home in Vancouver, a Jewish facility, has protested to the BC College of Physicians and Surgeons about Dr Ellen Wiebe, who has admitted participating in the death of 83-year-old Barry Hyman.

In another case, also in Vancouver, 64-year-old Ian Pope had to move out of St. Paul's Hospital, a Catholic facility, to obtain “medical aid in dying”, also from Dr Wiebe, because the hospital will not allow it on its premises. "I thought it was ridiculous," Mr. Pope's daughter said, "because it's a publicly funded hospital."

The Globe and Mail commented:

Mr. Pope's experience underlines the challenges that patients across the country still face if they end up near the end of their lives in a hospital, nursing home or hospice that objects to assisted dying – a procedure that has now been legal in Canada for more than 18 months.



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January
13
 

British fertility doctors back government-funded egg freezing for ‘transfolk’

Women who have sex change surgery to become men should still be able to have babies, according to the British Fertility Society.

Dr James Barrett, lead clinician at the Gender Identity Clinic at Tavistock and Portman NHS Foundation Trust, complains that: “The number of people coming forward with gender dysphoria has increased rapidly over the past decade. But the consistent provision of [National Health Service] funding for fertility preservation for this group is yet to catch up.  

“This is medical. It's people whose fertility is impaired as a result of actually NHS mandated treatment for a well-established condition that has been treated by the NHS for the last 50 years.”

Powerful hormone treatment and surgery could make women who are becoming men infertile. This “is a real disease,” says Dr Barrett, “and it is hugely frustrating that the whole NHS is not always able to help our patients with that part of their lives.

Another problem faced by British women who want to become men is that some NHS Trusts use eleigibility criteria for women seeking fertility preservation about weight and age. For IVF, women have to be 23, but it seems that ‘transfolk’ are often younger.

Josephine Quintavalle, from Comment on Reproductive Ethics, told The Telegraph (London): “The cash-strapped NHS should be concentrating on offering good basic healthcare to women or helping them beat their cancer, and not get side-tracked with these kinds of novelties. Egg freezing is an invasive procedure and the outcomes are far from clear.”



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January
13
 

Chinese black-market surrogacy is booming

Fueled by high demand and high rewards, black-market surrogacy is booming in China, The Times (London) reports. Its source is The Paper, a state-run news website, which carried out a two-month-long investigation.

Agents charge commissioning couples anywhere between US$55,000 and $155,000 for a baby, gender guaranteed. It is also risky, especially if there are problems with the pregnancy or if the baby is disabled.

Everything about the transactions is illegal, from the surrogacy to gender selection. But couples are desperate. IVF is often unavailable. And after the relaxation of the one-child policy, many women want to have a second child, but they are too old. Other have lost an only child and they want to replace him.  

And the money is welcomed by poor villagers. The Times reports:

“My little daughter has done it several times. My older daughter just delivered twins for others. My daughter-in-law is now pregnant. I helped her for a few months until she was settled,” a middle-aged woman said. “If you can bring home hundreds of thousands of yuan, which mother-in-law would pick quarrels with her daughter-in-law?”

Residents in one village told undercover journalists that more than 100 local women were working as surrogate mothers. “Sometimes mother-in-law and daughter-in-law are doing it together. One villager would introduce another to the business, just like introducing each other to factory jobs,” one villager said. “They return home with branded bags, and they go out for another [surrogacy] when they spend all the money.”



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December
16
 

Italy passes controversial end-of-life bill

After 30 years and 3000 attempts to propose amendments, an end-of-life bill was passed by the Italian Parliament this week which allows patients to end their lives by refusing to and drink. It also allows patients to express binding end-of-life care wishes through a text or a video.

The new legislation does not permit assisted suicide or euthanasia. However, it is clearly a momentous step in that direction. "Of course, we are still missing the legalization of euthanasia that we'll propose to the next parliament," said Marco Cappato, a spokesman for the right-to-die movement. The law was passed by a vote of 180 to 71.

Media reports suggested that Pope Francis may have inadvertently given support to the controversial legislation. In November he clarified the position of the Catholic Church by stressing that only "ordinary" care need be provided to the dying, not "extraordinary" care that extends life at all costs. However, the Catholic position maintains that eating and drinking are ordinary care, as much as hygiene.

According to RAI, the principal provisions of the new law are:

The consent of the patient is paramount: "no health treatment can be initiated or continued without the free and informed consent of the person concerned"”

Artificial nutrition and hydration: these are to be regarded as medical interventions because they are administered through health devices and, consequently, can be rejected or suspended.

Continuous deep palliative sedation: sometimes called “slow euthanasia”, this is permitted by the new legislation with the consent of the patient.

Responsibilities of doctors. On the one hand, doctors cannot be prosecuted for neglecting their patients if they refuse treatment and die. On the other hand, they can refuse to participate, as a kind of conscientious objection.

Palliative care: even if the patient refuses to prolong his life with treatment that he regards as burdensome, doctors must still make every effort to relieve his or her suffering.

Living wills: the patients can express binding preferences for their end of life care through a letter, or if they are incapable of writing, through a video.     

The legislation is being framed as a loss for the Catholic Church, which consistently opposed it. However, in the light of sympathetic media coverage given to several tragic end-of-life disputes, popular support in opinion polls, and lack of unity amongst Catholic medical professionals, the outcome was not surprising. 



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December
16
 

A transplant surgeon’s autograph book

A renowned British transplant surgeon has pleaded guilty to assault after he was reported for having branded the livers of two patients with his initials.

Simon Bramhall, 53, used argon gas to label the livers “SB”. The patients were under sedation and apparently they sustained no lasting harm, as the marks disappear by themselves. 

However, Joyce Robins, of Patient Concern, observed: “This is a patient we are talking about, not an autograph book.”

Mr Bramhall was suspended from his post as a consultant surgeon at Birmingham’s Queen Elizabeth hospital after a colleague spotted the initials in routine follow-up surgery.

Earlier this year the General Medical Council censured him. “It risks bringing the profession into disrepute and it must not be repeated,” it said at the time. “Whilst this failing in itself is not so serious as to require any restriction on Mr Bramhall’s registration, it is necessary in response to issue this formal warning.”

The public prosecutor said that this was a case without precedent in criminal law. “[T]hat which he did was not just ethically wrong but criminally wrong. They reflect the fact that Dr Bramhall’s initialling on a patient’s liver was not an isolated incident but rather a repeated act on two occasions, requiring some skill and concentration. It was done in the presence of colleagues.”

This bizarre case about violating a patient’s autonomy was reported around the world. However, a woman who owes his life to his skill told the Birmingham Mail that she didn’t mind:

“Even if he did put his initials on a transplanted liver, is it really that bad? I wouldn’t have cared if he did it to me. The man saved my life. It seems a bit silly, banning him from work. He’s a really good man who can do a really good job.” 



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December
16
 

Utility or happiness? A case study from Detroit

Here’s an interesting case which illustrated the difference between health care in the US and UK. Detroit resident Vincent Thomas, 58, was battling multiple myeloma, and only had a few months left to live.

And worst of all, he was nearly blind because both of his eyes were screened by cataracts. He asked his doctors if they would authorise an operation to remove the cataracts. He was stopping his cancer medication and going into hospice care anyway, but he wanted desperately to see his family before he died.

There was an uproar at the clinical meeting at Michigan Medical. According to his ophthalmologist, Julie Rosenthal:

Our anesthesiologist and others on the operating room team were opposed to performing a surgery on a patient on hospice with only weeks to live. The anesthesiologist was trained in Britain and noted that Thomas' cataracts would never be removed there, where committees decide on the utility of certain treatments and procedures. For someone who would only get a few weeks of "use" out of his surgery, the costs couldn't be justified. Thomas' oncologist was concerned about his health and had a serious discussion with him. However, Thomas understood the risks and decided it was worth it to undergo the surgery.

The surgery went well. Mr Vincent regained his independence and was able to drive to see his relatives. He died a few months later.

Dr Rosenthal asks whether the right decision had been made. She argues that it was. Compared to the huge amount spent on treating resistance multiple myeloma, it was “chump change”.  Treatment for the disease and the side effects can cost US $125,000 to $256,000 per patient. Cataract surgery costs about $3000. She writes:

We make heroic, costly efforts to prolong life, but what about treatments that improve life, that make people's last days better and allow them to finish their days in a meaningful way?



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December
16
 

Adverse IVF incidents rise in UK: report

The UK’s fertility regulator, the Human Fertilisation and Embryology Authority, has issued a cheery picture of the British IVF industry in its first-ever “state of the sector” report. Its proudest achievement was to reduce the multiple birth rate to 11% -- a “fantastic achievement”, in the words of the HFEA press release

The report covered the performance of fertility clinics and research laboratories in the financial year 2016-17 across a range of criteria. It is the first such report since the HFEA was formed 27 years ago.

Prof Adam Balen, Chairman of the British Fertility Society, told The Telegraph: “We welcome the report, which shows the extraordinary commitment our specialty has to transparency ... “We are confident that, in reality, there is no evidence that practices have changed or that there ought to be concerns about the sector.”  

However, at the bottom of the press release, it was acknowledged that the number of “adverse incidents” had actually risen.

In 2016, 76,500 treatments were carried out in the UK– a 6% increase from 2015 – whilst the number of incidents increased by 8.5%. There was a change in the severity of incidents, with a lower number of grade B incidents and a higher number of the less serious grade C incidents.

The single grade A incident in 2016 – there were none in 2015 – involved the birth of a baby with the lethal disease cystic fibrosis. Through inadequate paperwork, the parents were not believed to be carriers. Had it been known that the embryo had a gene for the disease, it would have been destroyed and another embryo implanted.

Aileen Feeney, the head of Fertility Network UK, declared that clinics had to put safety first. “It is of grave concern to see that the number of adverse incidents at fertility clinics is continuing to rise (up 8.5 per cent in the last year), and at a rate which is higher than the growth in the number of fertility treatments carried out in the last 12 months (a 6 per cent increase)” she said.



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December
16
 

Is infertility a disease?

In a very interesting brief discussion in BioNews, Hane Maung, of Lancaster University, asks whether government funding for fertility treatment should be framed as fighting disease.

Describing infertility as a disease has some strong supporters. The World Health Organization considers infertility to be “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse”. The influential 1984 Warnock Report states that “an inability to have children is a malfunction and should be considered in exactly the same way as any other”.

However, this is overly simplistic, contends Dr Maung.

First, there are many causes of infertility. There may be anatomical or physiological anomalies; fertility declines with advancing age; some can conceive with one partner but not with another; those who are in same-sex relationships or childless by choice are socially infertile. “it is possible that some cases of infertility could be considered diseases while other causes could not,” he writes.

Second, there is the philosophical question of whether infertility is a disease or just a difference. Is a disease a mere deviation from a statistical norm? Or a harm which keeps a person from attaining his or her goals? Or both? It is difficult to say in many cases of infertility.  

“It seems that we cannot reach agreement over whether infertility is a disease, even with our best theories of disease. How, then, are we to evaluate whether infertility warrants state-funded treatment?” he asks.

Rather than trying to shoehorn infertility into the disease framework, it would be better to focus on other reasons for justifying government funding, Maung argues.

we should keep the debate centred on the key ethical issues. We need to focus on the distress associated with childlessness, the right to reproductive liberty, the perceived significance of genetic relatedness, the influence of pronatalism, and the structural inequalities that make it difficult for people from certain groups to form their desired families. These are the considerations that we should examine when debating whether fertility treatments should receive state funding. 



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December
16
 

‘My shock at discovering I was a donor child’

Two readers got in touch with the BBC after it broadcast a story on the positive side of egg donation.

One, 21-year-old Elizabeth, from the US, said that she learned as an 11-year-old that she was the child of her father’s sperm and an egg donor. The knowledge actually brought her closer to her parents, she says, and she wants to be an egg donor herself. “If I could help at all to de-stigmatise the idea, I would feel very proud,” she wrote.

However, the other story, from 35-year-old John, from the UK, was very different:

As I was conceived in the early 80s it's impossible to find records as to who the egg and sperm donors, my biological parents, are. It was rare for that information to be kept on file then ... Suddenly my whole existence felt like a lie.

My relationship with my social parents deteriorated and I spent years moving around, doing a number of odd jobs. I also battled with gambling issues. I felt like a gypsy. I should add that my sister had a different reaction to me. She maintains a good relationship with our social parents, whereas mine has almost entirely broken down.

Even though I am now married, with a young child of my own, I am still against gamete donation. We shouldn't be playing around with science like this. If I had been adopted, it would be easier to trace the story of how I came to be and easier to find roots. As it stands it's unlikely that my egg or sperm donor parents knew each other, and I don't know the motivations of why they chose to donate.

I feel that donor conception is a trade in human beings and very few people consider the effects it has on a child.



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December
09
 

Bioethics on Capitol Hill: a $5 million surrogacy?

One of the quirkier stories bobbing in the flood of “inappropriate behaviour” in media HQs, Hollywood and Washington comes from the House of Representatives this week. A strongly pro-life Congressman from Arizona, 60-year-old Trent Franks, has resigned after being accused of pressuring a staff member to act as a surrogate mother for him and his wife. It is one of three resignations this week for “inappropriate behaviour” from Congress.

According to an AP exclusive, the woman claims that he offered her US$5 million – an amazing figure when the going rate is only about $100,000. She says that Mr Franks asked her at least four times if she would be a commercial surrogate.

At least one other staffer has alleged that Franks approached her about surrogacy.

In a statement announcing his resignation, the former Congressman said that he and his wife had struggled with infertility. But he said he “absolutely never physically intimidated, coerced, or had, or attempted to have, any sexual contact with any member of my congressional staff."

Franks, a Southern Baptist, and his wife tried IVF and adoption without success. They organised twins with a surrogate mother, whom he described as “a wonderful and loving lady, to whom we will be forever grateful.” But then they wanted another child. He described the IVF technique used in tandem with the surrogacy as a “pro-life approach” that did not result in discarding embryos.

Given Franks’s reputation as a crusading anti-abortion Christian, these revelations have sparked comments from all angles. The debate is more about pressure than reproductive technology as such. After all, surrogacy has become a familiar theme in American politics. The son of the Republican presidential candidate in 2012, Mitt Romney, used a surrogate to bear twins.

However, coming from an aggressively pro-life Baptist, the notion of surrogacy smacked of hypocrisy. Evangelicals and Catholics are hostile toward IVF and surrogacy even if there are no surplus embryos. The Washington Post helpfully tracked down a statement from the Southern Baptist Convention to suggest that there was an inconsistency between Franks’ principles and his actions.

“Almost all Christian bioethicists agree that most forms of surrogacy are theologically and morally problematic. The moral qualms generally concern the exploitation of women (e.g., ‘womb-renting’), the selling of children, the violation of the marital covenant, and the use of embryo-destructive reproductive technology.”

Mother Jones described the Congressman’s actions as “incredibly creepy” and Salon compared them to the Handmaid’s Tale, Margaret Atwood’s dystopian fable about fundamentalist Christians who rape their servants if their wives are pregnant. It was not a good day for pro-life Christian politicians. 



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December
09
 

Hormonal contraception boosts risk for breast cancer in Danish study

Women who use hormonal contraception face a small but significant increase in risk for breast cancer, according to a large Danish study published in the New England Journal of Medicine this week.

Using data from about 1.8 million women over a decade, researchers found that for every 100,000 women, hormone contraceptive use causes an additional 13 breast cancer cases a year. That is, for every 100,000 women using hormonal birth control, there are 68 cases of breast cancer annually, compared with 55 cases a year among nonusers.

In other words, the risk of breast cancer was 20% higher among women who were currently using or had recently used hormonal contraceptives than among those who had never used them. And the risk increased with longer duration of use.

“This is an important study because we had no idea how the modern day pills compared to the old-fashioned pills in terms of breast cancer risk, and we didn’t know anything about IUD’s,” Dr Marisa Weiss, an oncologist who founded the website breastcancer.org told the New York Times. “Gynecologists just assumed that a lower dose of hormone meant a lower risk of cancer. But the same elevated risk is there.”

An Oxford academic, Prof David J. Hunter, commented on the results in an NEJM commentary. He candidly admitted that “The association between the current use of oral contraceptives and breast cancer is well established”. However, many doctors believe that newer versions of the Pill are safer. Sadly, this appears not to be the case. Hunter writes in the NEJM:

these data suggest that the search for an oral contraceptive that does not elevate the risk of breast cancer needs to continue. In the 1980s and 1990s, there was some optimism regarding the development of a formulation that would reduce a woman’s risk of breast cancer,8 but research into this possibility appears to have stalled.

Worldwide 140 million women use hormonal contraception -- 13% of women between the ages of 15 and 49. In Denmark, this figure is about 40%,

This has been a dismal year for news about the Pill from Denmark’s rich health data. One of the researchers on the Pill study also contributed to another study published in November in The American Journal of Psychiatry which showed that hormonal contraception leads to markedly more suicides and suicide attempts. “We saw a tripling of the number of suicides and a more than doubling in the number of attempted suicides in the group of women using hormonal contraception,” said the leader of that research team, Professor Øjvind Lidegaard.



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December
09
 

Euthanasia is only for doctors, say Dutch prosecutors

Albert Heringa at his trial in 2015 

A 75-year-old Dutch man who helped his 99-year-old mother to die after her euthanasia request had been refused by doctors should be given a three-month suspended jail sentence, says a public prosecutor.

The case has been in the courts and the media for years. The woman died in 2008. Her son Albert Heringa was found guilty in 2013 but he was not punished. On appeal in 2015 the Dutch Supreme Court called for a retrial.

The public prosecutor declared in court that “Assisted suicide can only be carried out without punishment by a doctor. The suspect is not a doctor and cannot therefore claim exclusion from prosecution on the grounds of the euthanasia legislation.” While his intention was good – to free his aged mother from blindness and back pain – Heringa was not authorised to carry out euthanasia.

Heringa filmed his mother’s last moments as she took a lethal dose of medication. The footage was later used in a 2010 documentary, De laatste wens van Moek (Mum’s final wish). 



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December
09
 

Ethical standards urgently needed for neurotechnology, say researchers and ethicists

A group of researchers and ethicists delivered a warning in Nature in November about the dangers of neurotechnology and AI (sorry, guys, we missed this earlier). The Morningside group, headed by Columbia University neuroscientist Rafael Yuste, claims that existing ethical standards have been outpaced by galloping technology:

we are on a path to a world in which it will be possible to decode people's mental processes and directly manipulate the brain mechanisms underlying their intentions, emotions and decisions; where individuals could communicate with others simply by thinking; and where powerful computational systems linked directly to people's brains aid their interactions with the world such that their mental and physical abilities are greatly enhanced.

Most research in the area is currently in medical applications, such as helping people with brain and spinal cord damage. But it will soon have commercial and military applications which raise important ethical issues:

the technology could also exacerbate social inequalities and offer corporations, hackers, governments or anyone else new ways to exploit and manipulate people. And it could profoundly alter some core human characteristics: private mental life, individual agency and an understanding of individuals as entities bound by their bodies.

Hence the Morningside scholars propose four ethical principles to be incorporated into ethical codes and legislation.

Privacy and consent. Most people are already hooked up to the internet through their smartphones, which can collect huge amounts of revealing data. Google says that people touch their phones 1 million times a year. “We believe that citizens should have the ability — and right — to keep their neural data private,” assert the authors. Opting out of sharing this data should be the default choice on devices. The transfer of neural data should be regulated like organ donation to prevent a market from developing.

Agency and identity. “Neurotechnologies could clearly disrupt people's sense of identity and agency, and shake core assumptions about the nature of the self and personal responsibility — legal or moral.” Therefore “neurorights” should be protected by international treaties. Consent forms should warn patients about the risk of changes in mood, sense of self and personality.

Augmentation. Neurotechnology could allow people to radically increase their endurance or intelligence, creating discrimination and changes in social norms. The researchers urge that “guidelines [be] established at both international and national levels to set limits on the augmenting neurotechnologies that can be implemented, and to define the contexts in which they can be used — as is happening for gene editing in humans.”

Bias. Research has shown that bias can be incorporated into AI system, and can be devilishly hard to eliminate. “Probable user groups (especially those who are already marginalized) have input into the design of algorithms and devices as another way to ensure that biases are addressed from the first stages of technology development,” comments the Morningside Group.

Within academia these proposals may seem like Ethics 101. But history shows that once devices are commercialised ethics are easily forgotten:  

History indicates that profit hunting will often trump social responsibility in the corporate world. And even if, at an individual level, most technologists set out to benefit humanity, they can come up against complex ethical dilemmas for which they aren't prepared. We think that mindsets could be altered and the producers of devices better equipped by embedding an ethical code of conduct into industry and academia.



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December
09
 

How long should women’s eggs remain frozen for social purposes?

The British Fertility Society has recommended that the time limit on freezing eggs for social reasons be changed from 10 years to 55 years, thus potentially allowing women to have children when they are in their 80s.

Freezing eggs for medical purposes is already permitted for 55 years. This allows girls made infertile by cancer treatments as toddlers, for instance, to possibly have children as adults. Backers of a higher limit for women who freeze their eggs for social reasons, like wanting to delay childbirth until they find a suitable partner or complete a satisfying professional career, say that 10 years is inadequate.

The British Fertility Society says the limit is “arbitrary” and does not take into account new technology. Its Chair, Professor Adam Balen, told The Daily Telegraph: “There is no justification for the 10-year time limit for eggs or sperm. It has no rationale and I think they just plucked the number out of thin air. Practice changes and life moves on, that’s the danger of enshrining these things in an act of Parliament.”

This not the first time that the 10-year limit has been criticised. Last year Professor Emily Jackson, of the London School of Economics, wrote about the issue in the Journal of Medical Ethics. She concluded:

"Because social egg freezing is in its infancy, we do not know what practical impact the 10-year time limit will have upon women who have frozen their eggs. If a woman has 3 years of storage left, at what point should she give up on meeting a suitable partner and attempt IVF with donor sperm, for example? It seems likely that women faced with the imminent destruction of their eggs will feel under pressure to use their eggs before time runs out for them, ironically perhaps creating a newly ticking non-biological clock.” 



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December
09
 

After 70 years, lessons from the Nuremberg Code

Karl Brandt, Hitler's personal doctor, on trial at Nuremberg 

On August 20, 1947, an international tribunal which investigated the crimes of 23 Nazi doctors and bureaucrats involved in concentration camp medical experiments issued its verdict. As part of its judgment (seven of the men were sentenced to death) the tribunal also set a 10-point set of rules now known as the Nuremberg Code.

This called for the “voluntary consent” of the human research subject, an assessment of risks and benefits, and assurances of competent investigators. As an essay in JAMA by experts from the US and the UK points out, “These concepts have become an important reference point for the ethical conduct of medical research.”

The message of the authors is that rules do not necessarily lead to compliance. Surprisingly, at least for readers unversed in the history of medical ethics, both in Germany and in the Communist Eastern Bloc the protection of patients and respect for their autonomy were topics with which doctors were very familiar.

In Poland, for instance, Teodor Heiman published Etyka Lekarska (“Medical Ethics”) in 1917 denouncing the exploitation of patients. In 1967 the Polish Medical Association published “Deontological Ethical Rules” (Deontologiczno-Etyczne Zasady) with clear and strict discussion of the standards embodied in the Nuremberg Code. Even in East Germany, medical ethicists worked with government commissions to create safety standards for experimental research subjects. Nonetheless, East German doctors were notorious for their participation in doping Olympic athletes.

There was obviously a gap, they argue, between the law and medical practice. The Nuremberg Code, despite its official-sounding name, has not been enshrined in any national legislation. This has permitted scandals like the participation of American psychologists in CIA “enhanced interrogation” during President Bush’s “War on Terror”.

So who must be responsible for ensuring that doctors act ethically? Other doctors, the authors argue:

The story of the Nuremberg Code is not one of ethical norms taking on the force of law. Rather, its legacy shows the fundamental importance of a robust organized medical profession that protects its independence from political interests and its ability to chart its own moral course, yet is at the same time open to the essential role of nations and government agencies that respect broadly defined and agreed-upon rules to protect the rights and well-being of human research participants.



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December
02
 

Help us turbocharge bioethics debates

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For this reason we would like to ask for your support. Your donation willcontinue to enhance a fruitful debate on bioethics, keeping BioEdge a place where people with different views can work together for the future of humanity. 

 

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December
02
 

If you get a ‘do not resuscitate’ tattoo, will doctors pay attention?

Doctors at a Florida hospital’s emergency department were startled to discover the words “do not resuscitate”, together with a signature, tattooed to an unconscious man’s chest. Should they respect the request or not?

The 70-year-old man had no identification and no next-of-kin could be found. His blood alcohol was high. His health was very bad, with a history of chronic obstructive pulmonary disease, diabetes, and an irregular heart rate.

The doctors decided to keep him alive, invoking the principle of not choosing an irreversible path when faced with uncertainty. In a case report in the New England Journal of Medicine, they say that “He was placed on empirical antibiotics, received intravenous fluid resuscitation and vasopressors, and was treated with bilevel positive airway pressure.”

However, the hospital’s ethics consultants advised the medical team to honour the patient’s request. They contended that “it was most reasonable to infer that the tattoo expressed an authentic preference, that what might be seen as caution could also be seen as standing on ceremony, and that the law is sometimes not nimble enough to support patient-centered care and respect for patients’ best interests.”

The patient died without recovering consciousness.

The issue of DNR tattoos has not received an extraordinary amount of attention in the scholarly literature. There are counter-examples. For instance, in 2012, California doctors reported in the Journal of General Internal Medicine that a 59-year-old man was admitted to hospital for a below-the-knee amputation due to chronic ulcers. He wanted to be resuscitated in the event of heart or lung failure.

Noting that he had a DNR tattoo, hospital staff queried the conflicting signals. “He explained that he had lost a bet playing poker with fellow ancillary hospital staffers while inebriated in his younger years; the loser had to tattoo ‘D.N.R.’ across his chest.” Understandably, the doctors suggested that he have the tattoo removed to avoid confusion in the future. “He stated he did not think anyone would take his tattoo seriously and declined tattoo removal.”

So the question of whether you should get a DNR tattoo remains open. Perhaps you could write, “Do not resuscitate (and I got this tattoo when I was sober)”.



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December
02
 

Rohingya face population control pressure on both sides of the border

One strand in the persecution of the Rohingya Muslims by the Myanmar government is population control. Since 2005, the government has tried to enforce a two-child policy. Back in 2015, Physicians for Human Rights complained that Millennium Development Goals were being used by the government to force the Rohingya to have fewer children.

And now, in the squalid camps across the border in Bangladesh which are now home to more than 600,000 Rohingya, the Bangladesh government is trying to sell the same message -- with no more luck than their Myanmar counterparts. Public health official Dr Pintu Bhattacharya told Australia’s ABC that a Bangladeshi incentive scheme should be extended to the refugees. They are paid a small amount for voluntary sterilisation. "If we do not have this program among refugees then we will have more pregnancies, more newborns and more population," he says.

Rohingya families are large and some men have several wives. Most couples have six or seven children and family planning workers have met families with 19 children. Many told AFP that a large family will help them survive in the camps. Many also believe that contraception is against Islam.

In the light of the fact that the Myanmar government weaponised contraception to control the Rohingya, perhaps it is understandable that these desperate refugees believe that large families represent freedom. 



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December
02
 

Some Canadian doctors are refusing to treat attempted suicides

Canada’s new euthanasia laws are perplexing doctors who have to deal with suicide attempts. According to the National Post, there have been a number of reports of doctors who refused to treat people who had tried to kill themselves. In the case of poisons, remedies were readily available.

Quebec’s College of Physicians has issued an ethics bulletin which says that last year, “in some Quebec hospitals, some people who had attempted to end their lives through poisoning were not resuscitated when, in the opinion of certain experts, a treatment spread out over a few days could have saved them with no, or almost no, after-effects.”

However, the bulletin says that this approach is mistaken: “If there is a life-threatening situation, you have to do whatever is possible to save a life, then you treat the underlying cause ... From a moral point of view, this duty to act to save the patient’s life, or to prevent him from living with the effects of a too-late intervention, rests on principles of doing good and not doing harm, as well as of solidarity. It would be negligent not to act.”

Bernard Mathieu, president of the 500-member Association of Quebec Emergency Physicians, said that the new euthanasia law had probably confused some doctors. “It’s possible it has confused doctors a little bit,” he said. “Patients are being given the right to no longer live, and doctors are even being asked to help them in certain cases.”

Bioethics writer Wesley J. Smith was scathing in his comments about the news. “How many of those people would have been glad their lives were saved, as sometimes happens when suicides fail? We’ll never know because they are dead.”



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December
02
 

Should doctors comply with all patient requests?

American doctors are increasingly being paid according to patient satisfaction. According to a report in Forbes, 2% of primary care physicians’ pay is now based on “patient satisfaction metrics” and 1% of specialist physicians’ pay.

Does this mean that doctors should agree with every request from a patient? The authors of a recent article in JAMA Internal Medicine respond with a qualified No. “Clinician denial of some types of requests was associated with worse patient satisfaction with the clinician, but not for others, when compared with fulfillment of the requests. In an era of patient satisfaction-driven compensation, the findings suggest the need to train clinicians to deal effectively with requests, potentially enhancing patient and clinician experiences.”

They found that 68% of requests included an explicit request by the patient. But the doctors only complied with only 85% of these.

Did refusal to comply upset patients?

Yes, if it involved physician referral, pain medication prescription, or laboratory test referral and the doctors received a lower satisfaction rating. However, when they refused to supply antibiotic prescriptions or imaging test referral patients accepted their decision without protest.

When doctors did refuse, their satisfaction ratings could be 10 to 20 percentiles lower. “The sizes of the associations suggest that clinicians who are less likely than their colleagues to fulfill patient requests for these services could face a penalty in satisfaction ratings, potentially affecting clinician career satisfaction, compensation, and handling of subsequent requests for these services.”

Doctors probably do not need scholarly research to realise that they will suffer financially if they refuse patients requests. So one down side, the authors note, is that “clinicians may be tempted to adopt a default approach of simply acquiescing to patient requests, including requests for low-value care, in an effort to maintain both favorable patient satisfaction ratings and clinical productivity targets.”

What doctors need, they suggest, is “Training ... to provide clinicians with communication approaches that foster a positive patient experience without simply acquiescing to requests for low-value care, thereby avoiding the harms of unnecessary evaluation and treatment, maintaining good stewardship of resources, and potentially enhancing clinician career satisfaction.

This research seems to have a certain relevance to the debate over the morality of conscientious objection. Some bioethicists, like Julian Savulescu, contend that refusal of services based on conscientious objection has no place in modern medicine. These findings suggest that the elimination of conscientious objection might be financially beneficial for doctors and medical health companies. Second, it might be associated with “low-value care”. Third, refusal of services like abortion and contraception could be turned into a positive patient experience if clinicians had better communication skills. 



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December
02
 

This is what happens when no one says No to a patient with anorexia nervosa

The death of a young Australian wife and mother raises the question of whether healthcare workers should always comply with the wishes of their patients.

A coronial inquiry is investigating the death in 2014 of a 28-year-old Adelaide woman, Claudia La Bella. It turns out that she was spending A$500 a week on laxatives, sometimes consuming as many as 800 tablets a day.

Mrs La Bella was a complicated woman. Skeletal and weak from the laxatives, she concocted a story for her family and friends that she was suffering from ovarian cancer. She had also embezzled $374,000 from her employer over five years, which no doubt created a great deal of tension.

However, a psychiatrist declared that it was incomprehensible that the staff at a local pharmacy would order 25 to 30 boxes of Dulcolax for her every week, each containing 200 laxative tablets.

"I still cannot comprehend how they morally and ethically sold someone up to $500 a week worth of laxatives," Dr Maria Naso said. "Just because they are not a regulated item does not mean we can forfeit our moral and ethical responsibility."

“Most people know that laxatives are abused by teenagers — girls talk about it in school, it’s on the internet. Selling that amount is beyond words,” she told the coroner.

Dr Naso said that a letter should have been requested from the woman's doctor. "It is hard to not see this as a purely financial transaction that was of benefit to the owner," she said.

Reluctance to deny patient demands also emerged when she was admitted to hospital, weighing only 35 kilos. A CT scan showed dozens of tablets in her stomach. Nonetheless, she decided to leave the hospital nine days before her death. The doctor in charge advised against it but was reluctant to press the issue because she did not appear to have a mental illness.

The psychiatrist questioned the doctor’s judgement. "She was willing to place herself at risk and leave her daughter potentially motherless — this itself should have raised grave concerns for her mental state." Other doctors had raised the possibility of anorexia nervosa. The doctor could have legally required her to remain in hospital for 24 hours in order to get a psychiatric assessment.

It appears that too many people, including her family, said Yes to Mrs La Bella. Now she is dead. 



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December
02
 

South Korea debates the privacy of a patient’s intestines

Dr Lee Cook-jong during a press conference about the wounded soldier  

The escape of a defector from North Korea has ignited a bioethics controversy in South Korea.

Earlier this month, a low-ranking soldier posted in the border truce town of Panmunjom commandeered a jeep and rushed toward the heavily guarded border. He crashed the vehicle and ran through a park towards South Korea. North Korean soldiers shot at him, hitting him several times. South Korean soldiers pulled him over the border and he was rushed to a hospital.

Defections across the demilitarised zone are rare, so the defection was hot news in South Korea. The trauma surgeon who treated the defector, Lee Cook-jong, is a flamboyant figure who has often been in the news. He gave a press conference on November 15 in which he described some of the unnamed defector’s medical ailments.Dr Lee said he had found dozens of flesh-coloured parasitic worms, some as long as 27 centimetres, in the man's intestines, along with kernels of corn. This gave some insight into the health standards of North Korean soldiers. "In my over-20-year-long career as a surgeon, I have only seen something like this in a textbook," he said.

The controversy erupted when a member of the South Korean national assembly accused Dr Lee of violating the country medical privacy law and declared that he had committed a "terrorist act against someone's personality".

Kim Jong-dae, who represents a small opposition party, criticized him for disclosing personal information about patients. "Shootings at Panmunjom are well-known so it's natural the people and media pay a lot of attention but it is enough for the doctor to explain the process of the operation and the patient's condition," he wrote on Facebook. 

"The drastic image of a person's body contaminated by excrement and parasites shocked our society, and the people's fear and aversion went out of control," he said. "It's not only against courtesy for the patient but also a possible violation of the Medical Law." 



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November
25
 

Cephalosomatic anastomosis forges ahead

Ren Xiaoping and Sergio Canavero

Head transplantation is back in the news again. Controversial Italian neurosurgeon Sergio Canavero has claimed at a press conference in Vienna that a team from Harbin Medical University led by Dr Ren Xiaoping has carried out the world's first head transplant (aka Cephalosomatic anastomosis) experiment.

During an 18-hour operation, the surgeons transplanted a head onto a corpse. Dr Canavero says that the Chinese team would soon use this experience to move to a living human paralysed from the neck down.

The announcement was greeted with great scepticism by other scientists. “If someone’s making grand scientific claims but hasn’t provided robust evidence for them, yet they have done a TED talk, alarm bells should be ringing,” wrote Dean Burnett in The Guardian.

A debate was carried on in a special section in the latest issue of AJOB Neuroscience. Bioethicists queued up to attack the plans of Canavero and Ren as unfeasible and unethical. Two bioethicists were so exasperated by the attention paid to the overhyped and under-documented experiment that they asked: “why are we still talking about this?” Paul Root Wolfe wrote that while a “head transplant” was theoretically defensible, “attempts of Ren and Canavero to rush this primitive technology to a first-in-human trial is ethically indefensible and irresponsible.”

But more interesting is Canavero and Ren’s defence of their project, which they call – provocatively -- HEAVEN. They argue strongly that it is feasible and they point out three promising uses for it: life extension, gender reassignment, and cosmetic body swaps.

They hint that they have received many emails from desperate transsexuals who are interested in head transplants. “Imagine the parents of the brain dead body donor who are racked with sorrow and despair for their loss but are told that once the new being will start reproducing, his or her offspring will actually be the donor's parents’ descendants!”

The two neurosurgeons are defiant: “Yes, we forced the debate on the academe. But the future of hopeless people is in the balance. We would have dared no less.”

They also dismiss bioethics and bioethicists: “bioethics is mere opinion, more or less (dis)informed, at times with a heavy political streak... that hinges on supposed ‘authorities’ as ‘polestars’ of the present debate.”

And rather than modifying their ambitions in the face of nearly unanimous criticism, they reveal that Canavero has even more daring plans. He is making plans for brain transplantation. This project’s name is .... BRAVE. 



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November
25
 

Oral contraceptives linked to suicide

A study published in the American Journal of Psychiatry has found a positive association between the use of oral contraceptives and suicide attempts and suicide.

The study, conducted by researchers based in Denmark, involved a review of nationwide registers that provided individually updated information about use of hormonal contraception, suicide attempts, suicide, and potential confounding variables. Using data from nearly half a million women, the study analyzed prescriptions and filled prescriptions for contraceptives, as well as deaths and causes of death, and compared women taking this type of birth control to women who did not have a history of contraceptive use.

Among women who used hormonal contraceptives currently or recently, the risk of attempting suicide was nearly double that of women who had never used contraceptives. The risk was triple for suicide. The patch was linked to the highest risk of suicide attempts, followed by IUD, the vaginal ring and then pills.

Compared with those who had never used hormonal contraception, the relative risk of a suicide attempt rose twofold 1 month after initiation of hormonal contraceptive use, and the elevation in risk persisted with a decreasing trend after 1 year of use.

“Women should be aware of this potential adverse effect of hormonal contraception so that they might consider alternatives if they develop depression after starting use of hormonal contraception,” Øjvind Lidegaard, MD, Department of Gynecology, Rigshospitalet, Copenhagen, and Faculty of Health and Medical Sciences, University of Copenhagen, Denmark, told Medscape Medical News.



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
25
 

Doctors who receive a complaint are more likely to “overtreat”

Research from Imperial College London (ICL) has shown for the first time an association between the way complaints against doctors are handled and symptoms of anxiety, depression, and defensive medical practice.

The researcher team, led by Professor Tom Bourne from ICL’s Department of Surgery and Cancer, have conducted multiple studies in the past on the effects of complaints on doctors’ mental health; yet this is the first study to associate mental illness symptoms with specific aspects of the complaints process.

While many complaints against doctors in the UK are handled by the General Medical Council, some are investigated formally or informally by hospitals and practices.

The researchers conducted a detailed online survey of 6,144 British Medical Association doctors with past or current patient complaints against them. Doctors were asked a range of questions about their mood and health, the procedure by which the complaint was reviewed, and how they felt about the handling of the complaint.

The researchers discovered several interesting correlations between the review process and the mental health of doctors.

Doctors who reported feeling supported by colleagues during the complaints process were 36 per cent less likely to experience depression, and 31 per cent less likely to experience anxiety.

Similarly, doctors who reported feeling supported by management were 13 per cent less likely to experience depression and 20 per cent less likely to experience anxiety.

The researchers also identified a correlation between how the complaints were handled and “defensive practice” among doctors. Four out of five doctors who become the subject of a complaint find the experience so stressful that they start practising more “defensive medicine”:

“This involved ‘hedging’, which includes performing more tests than necessary, over-referral and overprescribing as well as ‘avoidance’, which includes avoiding procedures, not accepting high-risk patients or abandoning procedures early,” Professor Tom Bourne said.

The authors urge authorities and managers who handle patient complaints to give better support to doctors, including allowing them to contact their colleagues during suspension. Authorities should also stick to strict deadlines by which complaint investigations have to be completed, with better training for the staff responsible for investigation.



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
24
 

Russian surrogacy, controversial and unregulated

A Russian senator has proposed a ban on both commercial and altruistic surrogacy. Anton Belyakov, of the small A Just Russia party, compares commercial surrogacy to prostitution, which is banned. “It is immoral and brings harm to both mother and the child,” he told Women and Girls News Deeply.

Surrogacy is booming in Russia according to News Deeply. Vladislav Melnikov, head of one of the European Centre for Surrogacy, says that 2,000 children were born in Russia to surrogate mothers in 2016. Nationwide there are around 100 surrogacy centres, including 40 in Moscow.

The financial incentive for commercial surrogacy is substantial. Teachers, a common profession for women, are paid only about US$700-850 a month. But the fee for a surrogate mother is about $14,000 – about 18 months’ wages.

“According to Russian law, a surrogate mother can only be a woman who already has children, so often women come to us because they need money to feed their kids, especially if her husband has left the family,” said the manager of a surrogacy agency in Saint Petersburg. “Most of them also have to pay credits or mortgage loans to the bank.”

The head of the Center for Reproductive Law and Ethics, Konstantin Svitnev, has described the Russian Federation “as a sort of reproductive paradise, being the country with the most favorable legislation for intended parents, where no specific federal law regulates any aspect of assisted reproduction.” But the sketchy legislation can lead to great uncertainty.

Public opinion on the topic of surrogacy is divided. The hierarchy of the Russian Orthodox Church is bitterly critical. When Russian pop diva Alla Pugachova, then 64, and her 37-year-old husband had two children through surrogacy, a senior church spokesman said: “This is mutiny against God; this is very happy fascism with a contract, the money and confiscation of a child.”



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November
24
 

‘Uber for birth control’ creates new ethical challenges

Contraception is another area where logistics is outpacing regulation in the United States. A new smartphone app, Nurx (pronounced new Rx) promises to prescribe and deliver all kinds of contraception plus the morning-after pill. Since there are no consultation or delivery fees, for women with health insurance their contraception will effectively be free. For those who don’t, the service costs US$15 a month.

It’s “Uber for birth control” – a logical development of telemedicine and new business methods.

The app is designed to make obtaining contraception as simple as possible. A woman selects a prescription, answers a few health and demographic questions, and a doctor will write a prescription. The medication arrives within 3 to 5 days. Nurx automatically refills the prescription, as well.

There is a political side to the app, too. As the Trump Administration works to dismantle Obamacare and do away with mandatory contraceptive coverage, Nurx is well placed to supply the Pill discreetly and efficiently.

More disturbingly for opponents of teen contraception, it accepts applications from girls as young as 12 and anyone who might be ordering the Pill for the first time – without seeing a doctor face-to-face – although Nurx does offer the option of a video chat over the phone.

The impersonality of the Nurx app bothers some critics. However, Jessica Knox, the San Francisco-based full-time doctor for NURX has a response: “Look, people are going to have sex. And if we put barriers in place for them to get contraceptives, they may become afraid of even going to their own doctor to get preventative healthcare, which can lead to unintended outcomes.” 

Since Nurx has to comply with state laws, it is available in only 15 states plus Washington DC at the moment, but it is pushing to roll out its coverage across the US. 



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November
24
 

“Care” vs “overzealous treatment”: Pope Francis speaks on end of life issues

Pope Francis has advised doctors to avoid "overzealous treatment" of patients at the end of life, saying that "burdensome" treatment may not be in the bests interests of the person.

Addressing the World Medical Association European Regional Meeting on End of Life Questions -- a conference jointly organised by the World Medical Association, the German Medical Association and the Pontifical Academy of Life -- the Roman Pontiff said that that the development of powerful medical technologies calls for prudent discretion on the part of clinicians:

"greater wisdom is called for today [in end of life care], because of the temptation to insist on treatments that have powerful effects on the body, yet at times do not serve the integral good of the person".

The Pope broached the much discussed topic of "overly burdensome treatment", and discussed a series of ethical principles outlined by his predecessors Pius XII and John Paul II.

"...in the face of critical situations and in clinical practice, the factors that come into play are often difficult to evaluate. To determine whether a clinically appropriate medical intervention is actually proportionate, the mechanical application of a general rule is not sufficient. There needs to be a careful discernment of the moral object, the attending circumstances, and the intentions of those involved. In caring for and accompanying a given patient, the personal and relational elements in his or her life and death – which is after all the last moment in life – must be given a consideration befitting human dignity. In this process, the patient has the primary role."

Roman Pontiff’'s comments follow a statement earlier this year from the Pontifical Academy for Life on the controversy surrounding British infant Charlie Gard. In the statement, Academy president Vincenzo Paglia said:

“The proper question to be raised in this and in any other unfortunately similar case is this:  what are the best interests of the patient?  We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the Encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”  



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
24
 

Victoria one step away from legalising euthanasia

The Australian state of Victoria will soon legalise assisted suicide and euthanasia. On Wednesday, after a marathon 28-hour debate, the bill was finally approved in the upper house. A few amendments need to be ratified by the lower house next week, but that is expected to be a mere formality. 

“Today’s all about emotion, and it’s all about compassion,” said Premier Daniel Andrews. “It’s about providing for those who have for too long been denied a compassionate end, and the control, the power, over the last phase of their journey.”

So, from June 19, 2019, just 18 months away, patients who have a life expectancy of less than six months, whose illness is incurable and causes intolerable suffering, who are over 18 and who live in Victoria will be able to request “voluntary assisted dying". 

Legalisation in Victoria has ominous implications for other Australian states and territories. Similar bills have failed only by the narrowest of margins in South Australia, Tasmania and New South Wales. The “dying with dignity” lobby will be strengthened throughout the country. In Tasmania, Greens leader Cassy O’Connor immediately declared that she would introduce euthanasia legislation after next year’s state election, if she is returned.  

Premier Andrews has consistently argued that the new law is the safest and most conservative scheme in the world.

Whether that is true or not, the law can always be amended to make it less conservative at some stage in the future. Its six-months life expectancy requirement can be amended to 12 months; its lower age limit of 18 can be changed to 12; its exclusion of mental illness as grounds for assisted dying can be waived.

Australia’s best-known euthanasia activist, Dr Philip Nitschke, has already complained that the law is far too conservative.

“It’s one of the world’s most unworkable end-of-life laws, which really won’t address the needs of a growing number of people who want control at the end of life. It’s not going to change the growing demand by elderly people to have access to their own choice.”

And an aged health care expert criticised the six-months life expectancy requirement because predicting when a patient will die is notoriously difficult. “This may result in patients who would have been eligible, had they received an accurate prognosis, continuing to suffer until they die, thereby depriving them of a good death,” wrote Colleen Cartwright in The Conversation.

Two former Prime Ministers, Paul Keating, of the Labor Party, and Tony Abbott, of the Liberal Party, openly opposed the bill.

Mr Abbott commented that “People’s lives have to be respected and this idea that we should end the lives of people who have failed our test of usefulness or have failed our test of what constitutes a decent quality of life is absolutely dead wrong. I hope that a future Victorian parliament might reverse this.”



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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 residents 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. 



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
 

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”.


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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.”


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
 

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’