November
22
 

Dutch doctors cleared to euthanise dementia patients who have advance directives

Dutch doctors will be able to sedate demented patients and then euthanise them, if they have made advance directives, according to new official guidelines. This follows a Supreme Court ruling earlier this year which quashed the conviction of a retired nursing home doctor for murder.

The doctor, Marinou Arends, euthanised a 74-year-old woman, even though she was resisting, on the basis of advance care directives which she had written before she entered the nursing home. Although the doctor had secretly sedated her, the woman still had to be held down by her son-in-law so that she could be given the lethal injection. The patient had said she wanted euthanasia “when the time was ripe”, but she had not been clear about what she regarded as unbearable suffering.

Dr Arends was the only doctor to have been prosecuted since euthanasia was legalised in the Netherlands in 2002.

The court exonerated her, ruling that she had acted legally. It declared that if a demented patient is incapable of giving consent, doctors may proceed in accordance with prior written request even if they seem happy or even if they resist.

The regional euthanasia review committees (RTE) now advise giving doctors more leeway to follow their own judgement in practice.

“In giving euthanasia to a patient who is no longer mentally competent as a result of advanced dementia, it is not necessary for the doctor to agree with the patient the time or manner in which euthanasia will be given,” says the new RTE guideline. “This kind of discussion is pointless because such a patient will not understand the subject.”

Jacob Kohnstamm, chairman of the RTE, said the clarification stressed doctors’ reasonable, professional judgement and could relieve fears of prosecution in these rare cases.

"It’s only two or three cases a year but this might help doctors to have less fear of a penal case," he said in the Telegraph (London).   

“Doctors can now worry less that they are putting a noose around their own necks with euthanasia,” he said. “They can be less afraid of the justice system and the review committees.”

According to Dutch media, the new guidelines will affect very few people each year, as most doctors advise that patients with dementia should go at “five to 12” while they are still compos mentis. Last year there were 6,361 cases of euthanasia, representing 4.2% of deaths. Of these, 160 people had early stage dementia and just two were at an advanced or very advanced stage. These, of course, are the reported deaths – a good proportion of euthanasia cases are not reported.

So far this year, the RTE has approved one euthanasia for a woman between 70 and 80 with advanced Alzheimer’s, based on her advance directive, at the request of her husband.  

Michael Cook is editor of BioEdge



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November
22
 

Euthanasia as an option for Canadian nursing home patients who are sick of lockdowns

A final family get-together with Nancy Russell / ctvnews.ca  

This is just one story amongst many but it raises serious questions. A 90-year-old woman, Nancy Russell, chose euthanasia last month in Toronto. She was not suffering unbearable pain. She was just sick and tired of lockdown isolation in her nursing home.

According to a report in CTVNews, “Residents eat meals in their rooms, have activities and social gatherings cancelled, family visits curtailed or eliminated. Sometimes they are in isolation in their small rooms for days. These measures, aimed at saving lives, can sometimes be detrimental enough to the overall health of residents that they find themselves looking into other options.” 

“She, almost overnight, went from a very active lifestyle to a very limited life, and they had, very early on, a complete two-week confinement just to her room,” said her daughter. “She was just drooping. It was contact with people that was like food to her, it was like, oxygen. She would be just tired all the time because she was under-stimulated.”

Ms Russell supported Canada’s medically assisted dying but the first doctor to whom she applied refused because she had “too much to live for”. She applied again after “more concrete medical health” issues emerged. This time, the doctors gave her the tick of approval.

“She just truly did not believe that she wanted to try another one of those two-week confinements into her room,” her daughter said.

“When you stick someone alone and deprive them of the usual things that bring them interest in joy, that can be an incredibly isolating, lonely, depressing experience,” Samir Sinha, a geriatric specialist at Mount Sinai Hospital told CTV News.

“And frankly, when you can't look forward to getting out of your room, to having meals or doing activities with others, to even seeing your own families and loved ones, you can imagine for a person in the last few years of their life where these are the basic things that actually bring them joy and really defined what they would call their own quality of life, when you actually deprive a human being of these things, you can imagine that that can have significant psychological consequences that can really give people no real will to live anymore.”

Even to die, Ms Russell had to leave her nursing home. She spent a week with one of her children before she was given a lethal injection surrounded by her relatives on October 20. “She was able to direct a peaceful, pain free death on her own time and avoid a great fear of hers, which was to endure winter and lockdowns,” her daughter said.

Michael Cook is editor of BioEdge



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November
22
 

Bioethicist speaks about his own clash with Covid restrictions

Numerous articles have been published in bioethics journals about aspects of the Covid-19 pandemic. But bioethicist Joseph Meaney, the president of the National Catholic Bioethics Center, speaks from personal experience. He was hospitalised for four days with a near-fatal heart problem and had to cope with Covid-19 restrictions on visiting. He reflected on his experience with a journalist at Crux.

Hospitals should recognise a right not to die alone:

Certain hospitals and health care facilities, particularly nursing homes for the elderly, put into place draconian visitation restrictions as a reaction to the COVID-19 pandemic. The result of these policies was the prevention of family members or clergy from being able to come to the bedside of many dying persons as they wished. Large numbers of people had only medical staff around them when they died. These were preventable tragedies and especially serious from a spiritual perspective since the last rites can only be given in person and can be essential for preparing a person for death and their souls for eternal life through the forgiveness of sins.

Many institutions have a mistaken hierarchy of values.

What I believe is lacking is a compassionate understanding of human rights. For some secular humanists it could be indeed true that there is no higher value than preserving person’s physical life and they do not believe in life after death. It is their right to hold this belief, but they do not have the right to impose it on others. For Catholics and many other believers there are things worse than death or more important than reducing the risk of death.

Utilitarian considerations are not enough

What is frightening is the blindness to the pain and suffering being imposed unreasonably on patients and families. Empathy requires us to try and understand the feelings and beliefs of others. If what is being requested is impossible or clearly harmful, it can be refused. If a person values something tremendously, it should be given great weight. No one should be forced to cooperate with evil and violate their well-formed consciences, but what I see happening with the dying is a cold calculation. It is cheaper and easier to simply deny visitation and it can reduce the risk of contagion. 

Michael Cook is editor of BioEdge



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November
22
 

Leading British surgeon allegedly hoarded body parts

(Sorry, we missed this significant story which broke in September and October.) A pioneering orthopaedic surgeon has been officially censured for illegally keeping the bones of 5,224 of his patients without their consent for his private research. On October 22 conditions were placed on the medical licence of 67-year-old Derek McMinn.

Patients travelled from all over the world to have McMinn operate on their hips and knees at the BMI Edgbaston Hospital in Birmingham. He developed the first technique for successful metal-on-metal hip resurfacing and is an acknowledged authority in the field. His patients included politicians, sports stars and celebrities.

McMinn said that he had been storing bone samples in his private residence for 25 years with the verbal consent of his patients. However, consent is supposed to be documented in writing and there does not appear to be any evidence of discussions with his patients. His collection apparently included patient notes and X-rays. He claims that he acted with the full knowledge of his colleagues and employer.

The Independent was told by an anonymous source at the hospital: “It’s all been kept quiet, they have covered it up. There are lots of patients who haven’t been told and who don’t know he has their body parts. He was the goose that laid the golden egg. He generated an enormous amount of income for the hospital. He had been there a long time; it was almost his hospital really. It is shocking how was this allowed to happen for so long.”

Commenting on the scandal in The lndependent, Dr Alexis Paton, an ethicist with the Royal College of Physicians, blamed “tunnel vision”.

If McMinn failed to recognise his research was crossing a line, it also speaks to a very real, very modern and very persistent problem in healthcare that almost always results in harm to patients: tunnel vision.  

Tunnel vision occurs when healthcare staff focus on only one aspect of care, losing awareness of the situation and appropriate steps they should be taking to avoid harm. …

If McMinn was clandestinely hoarding human tissue, what he hoped to gain is unclear. Speaking as someone who reads a lot of these, a sound and well-written research proposal and ethics application would very likely have been approved. That he allegedly ignored the conventions of research ethics and patient rights for so long, talking his co-workers into colluding with him leaves one important and unanswered question: was it worth the risk?  

Michael Cook is editor of BioEdge



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November
22
 

Sex robots can offer the intimacy that the elderly disabled crave, says bioethicist

Sex robots are needed for older people, especially older people with disabilities, according to an article in the Journal of Medical Ethics. Nancy S. Jecker, a bioethicist at the University of Washington, in Seattle, contends that “the non-voluntary absence of sex from someone’s life is not just a bad thing but also a threat to a person’s identity and dignity” and sex robots can fill this gap in the lives of the elderly. Society should make “reasonable efforts” to help them as a way of promoting human dignity.

Jecker, who has written extensively about ethical issues associated with ageing societies, cites a number of other writers who believe that robots are the answer to the affective needs of lonely elderly and disabled people. “Almost everyone wants someone to love, but many people have no one. If this natural human desire can be satisfied for everyone… surely the world will be a much happier place,” writes David Levy, an authority on computer chess.

Michael Hauskeller, a philosopher at the University of Exeter, in the UK, argues that the advantage of sex robots is their reliability compared to human partners, who are unreliable and thereby inferior. “The problem with entering into relationships with other people,” he says, “is that, although they certainly can be a source of pleasure, more often than not they stand in the way of it. Moreover, even when they give us pleasure and happiness…this pleasure can always be taken away.”

Trusting that sex toys will become more and more sophisticated, Jecker contends that “Unlike sex devices that function merely to enhance sexual pleasure, people bond to sex robots and feel close to them. Sex robots create the possibility not just of sexual pleasure but also of sexual relationships and interpersonal intimacy.”

While acknowledging that many people are sceptical about the idea that a robot can ever substitute for the affection of a human being, she argues that “sex robots are not a perversion but a way to enhance dignity by shoring up capability shortfalls.”

Michael Cook is editor of BioEdge



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November
22
 

Serbian govt and media attack bioethicist

Prof. Vojin Rakić 

A leading Serbian bioethicist is being attacked by the government and media in his country, prompting an open letter supporting him signed by some of the most prominent bioethicists in the US, the UK and across Europe.

Professor Vojin Rakić is the founder and head of the Center for the Study of Bioethics  in Belgrade. His research focus is moral bioenhancement and he has debated the issue in the Journal of Medical Ethics with Julian Savulescu and Ingmar Persson. The letter describes him as “an internationally well-known and highly respected scholar, who is a man of integrity and courage and a much-valued colleague”.

It appears that Rakić fell foul of the Serbian President,  Aleksandar Vučić, after criticising him for being an autocrat who was using pandemic measures to consolidate his power. Since then, says the letter:

Prof. Rakić has been persecuted by the current Serbian authorities through the use of false accusations and has been regularly victimised on TV programs and on the front pages of regime-run media in Serbia. This campaign includes having been wrongly accused of misrepresenting himself in his professional role in the International Network of the UNESCO Chair in Bioethics (Haifa), a gross misrepresentation of elements of his academic work, as well as an onslaught of defamation of his person and his family, with blatant lies about his private life and the private lives of his underage children.

One of the bullets used by the government’s media stooges is an article which Rakić published in the journal Sexuality & Culture earlier this year. In “Prostitutes, Sex Surrogates and Sugar Babies” he argued for the basic morality of prostitution. This was used by the web portal Republika to insinuate that he was an immoral fraud.  

Amongst the signatories are Art Caplan, of NYU Grossman School of Medicine; Peter Singer, of Princeton University; John Harris, of the University of Manchester; Erik Parens, of The Hastings Center; and Udo Schuklenk, co-editor of Bioethics.

Michael Cook is editor of BioEdge



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November
22
 

Your mission, should you choose to accept it, is to blow up the universe

Euthanasia is usually viewed as a personal experience. But there are movements and philosophers who believe that it would be a good idea if the whole human race were to perish. South African philosopher David Benatar, for instance, argues that bringing people into existence always does them harm. And the Voluntary Human Extinction Movement advocates the gradual disappearance of mankind.

However, as Thomas Moynihan, of the University of Oxford, writes in The Conversation, these guys are amateurs compared to a nearly forgotten German philosopher, Eduard von Hartmann (1842-1906).

A disciple of Schopenhauer, von Hartmann believed that all life is suffering and all existence is pain. Therefore, the less life the better. If humanity managed to go extinct, evolution would eventually give rise to another intelligent species which would also experience great suffering. This would “perpetuate the misery of existence”.

Moynihan writes:

Hartmann thought that, as intelligent beings, we are obligated to find a way to eliminate suffering, permanently and universally. He believed that it is up to humanity to “annihilate” the universe: it is our duty, he wrote, to “cause the whole kosmos to disappear”.

In other words, the moral duty of humanity is to find a way to euthanise the universe.

Hartmann was convinced this was the purpose of creation: that our universe exists in order to evolve beings compassionate and clever enough to decide to abolish existence itself. He imagined this final moment as a shockwave of deadly euthanasia rippling outwards from Earth, blotting out the “existence of this cosmos” until “all its world-lenses and nebulae have been abolished”.

Von Hartmann was vague about how humanity could comply with its destined task, although he was confident that sooner or later appropriate technology would be developed.

Moynihan believes that von Hartmann was mistaken:

Hartmann’s philosophy is fascinating. It is also unimaginably wrong. This is because he confuses the eradication of suffering with the eradication of sufferers. Conflating this distinction leads to crazy visions of omnicide. To get rid of suffering you don’t need to get rid of sufferers: you could instead try removing the causes of pain. We should eliminate suffering, not the sufferer.

Moynihan has just published a book on the history of human extinction projects, X-Risk: how humanity discovered its own extinction.

Michael Cook is editor of BioEdge



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November
18
 

Biden announces expert team for planning Covid-19 fight

In one of his first initiatives after the election – which continues to be disputed by the incumbent -- US President-elect Joe Biden set up a Transition Covid-19 Advisory Board.

There is little doubt that the US is facing a crisis. New cases are rising in at least 40 states, with more than 9.3 million total infections and more than 236,000 deaths. According to exit polls, 73% of Biden voters felt that this pandemic was the most serious issue facing the country.

Mr Biden has appointed David Kessler, Vivek Murthy, and Marcella Nunez-Smith as his lead advisers. His policy is outlined on his campaign website.

“Dealing with the coronavirus pandemic is one of the most important battles our administration will face, and I will be informed by science and by experts,” said Mr Biden. “The advisory board will help shape my approach to managing the surge in reported infections; ensuring vaccines are safe, effective, and distributed efficiently, equitably, and free; and protecting at-risk populations.” 

The first part of his plan is to fix Trump's test-and-tracing policy. He will make testing free and widely available. He plans to double the number of drive-through testing sites, invest in home tests and instant tests, set up a “Pandemic Testing Board” to produce and distribute tens of millions of tests, and hire 100,000 contact tracers.

He also plans to use the Defense Production Act to ramp up production of masks, face shields, and other PPE so that the national stockpiles are fully replenished.

He will provide expert advice on how to apply lockdowns, on the notion that “Social distancing is not a lightswitch; it is a dial.”

When vaccines are available, he will “invest US$25 billion in a vaccine manufacturing and distribution plan that will guarantee it gets to every American, cost-free.”

And to protect older minority Americans he will “establish a Covid-19 Racial and Ethnic Disparities Task Force, as proposed by Senator Harris, to provide recommendations and oversight on disparities in the public health and economic response. At the end of this health crisis, it will transition to a permanent Infectious Disease Racial Disparities Task Force.”

On the controversial issue of masks, Biden says that he wants “every American to wear a mask when they are around people outside their household”. This is not a Federal responsibility so he has called upon governors and local authorities to make it mandatory in each state.

Reaction to his initiatives was subdued. At the libertarian site Reason, Ronald Bailey was supportive but suspicious of the ability of Obama-era bureaucrats to deliver the goods. A former head of Planned Parenthood and public health expert, Leanna Wen, said in the Washington Post that Biden’s team of advisors was top-heavy with medicos. She suggested adding economists, businessmen, celebrities who had experienced Covid-19, religious leaders, and Republicans. Wesley J. Smith pointed out in National Review that Biden’s task force Ezekiel Emanuel, of the University of Pennsylvania. He reminded readers that Emanuel wrote not long ago that “living too long is also a loss” – a dangerous sentiment at a time when the elderly are at serious risk.

Michael Cook is editor of BioEdge



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November
18
 

Eugenics policies are part of China’s five-year plan, says expert

An expert on women’s issues has rung alarm bells about the potential for eugenics in China’s latest “five-year plan”. Columbia professor Leta Hong Fincher told a panel of China watchers at a virtual conference by the Center for International and Strategic Studies last week.

“What caught my eye was that they actually use specific language saying that China needs to ‘upgrade population quality,’” she said. “They need to ‘optimize their birth policy.’ They even use a term … which is effectively emphasizing the role of eugenics in population planning in China.”

She told the conference that this also has an impact upon a serious human rights issue – the treatment of Uyghur Muslims in the northwest province of Xinjiang. The government is using draconian methods to limit births of the Uyghurs and to dilute Uyghur culture by encouraging intermarriage.

“We see it happening in Xinjiang with the forced sterilization of particularly Uyghur Muslim women. And the language in the plan suggests to me that the government is going to continue with that,” she said.

“You have seen a huge reduction in birth rates in Xinjiang and, on the flip side, the government is also trying to coopt and persuade Han Chinese women who are college-educated into having more babies.”

Birth rates fell by nearly a third in Xinjiang in 2018. A good part of this was attributed to the sinister-sounding term “better implementation of family planning policy.”

Back in 2018 Dr Hong Fincher criticised China’s population control policies in the New York Times. She claimed then that the government was treating women “as the reproductive agents of the state, as instruments of implementation for its eugenic development agenda.”

“The approach’s eugenic undertones are unmistakable. Even as officials urge college-educated, Han Chinese women to marry and get pregnant, they are discouraging, sometimes through coercion, ethnic minorities with high birthrates — particularly Uighurs in the northwestern region of Xinjiang — from having more children.”

There are financial incentives for intermarriage. The Guardian reported in 2014 that at least some local governments will pay 10,000 yuan (US$1500) to mixed-race couples during the first five years of their marriage, on top of housing, medical and education subsidies. This does not appear to have changed.

The government is even making bizarre match-making videos.   

On Hong Fincher’s Twitter feed she cites the despairing words of a Uyghur activist published on the Bitter Winter website:

“Uyghur women are also forced into marriages with Han Chinese men, a part of China’s strategy to force assimilation of the Uyghurs, colonize the region and take its resources while promoting the Belt and Road Initiative. There is no other way to view this other than as government-sponsored mass rape of an entire race of women with the express purpose of “breeding” the Uyghurs bloodline away. Uyghur women are unable to give birth to Uyghur babies anymore. Thus, there are no more new Uyghur generations and the Chinese government’s systematic genocide is set on the rails with an autopilot mode.”

Michael Cook is editor of BioEdge



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November
18
 

Does the autonomy principle work for substance abusers? 

Autonomy is the fundamental principle of contemporary bioethics – or most of it. In moral dilemmas, the path leading to greater autonomy is normally the right one. But are there exceptions?

In a fascinating article in the Journal of Medical Ethics, Laura Williamson, of Augusta University, in Georgia, argues that substance abuse is a disorder for which therapies based on autonomy are of little use. Far more important are relationships and empathy.

a simple focus on self-determination, while intended to empower, does not provide sufficient support to help us move beyond seeing people as solely responsible for what is a complex biopsychosocial condition. The focus remains on the person seeking treatment, not the professionals providing it. It also gives inadequate decision-making support to help people work through what is the best course of action for them: independence has been linked to abandonment. Finally, a focus on self-determination lacks the ability to highlight that what a person-centred approach requires is not leaving people to their own devices (by being less paternalistic), but actively engaging with and supporting them to make informed choices about their recovery options.

Promoting separateness over relatedness does not help addicts, she argues. “Healthcare professionals can continue to operate with misconceived and outdated concepts of autonomy that prioritise non-interference to such an extent that clients are left isolated.”

In fact, she says, privileging autonomy can promote stigma, as the fundamental reality of addiction is precisely impaired autonomy. “Without a stronger relational or social component, an individual focus can fuel a vicious circle which sees people with [substance use disorders] as responsible for their condition, blameworthy and the justifiable target of stigma.”

It’s a very thought-provoking article. The cost of alcoholism, illicit drug use and prescription opioid abuse is an estimated US$440 billion a year in the United States. A more liberal estimate which includes a quantification of society harm is $1.45 trillion. About 160,000 Americans died of drug or alcohol abuse in 2017. If autonomy is the fundamental principle inspiring treatment programs, it doesn’t seem to be working.

Michael Cook is editor of BioEdge



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November
18
 

Disabled groups attack liberalizing euthanasia in Canada

Lobby groups for Canadians with disabilities are working hard to defeat a bill broadening the scope of euthanasia legislation.

Under the current legislation, although some people with chronic illness want “medical aid in dying” (MAiD), they may not be eligible because their death is not “reasonably foreseeable”, in the words of the legislation.

A new proposal, Bill C-7, retains all of the existing eligibility criteria, but removes the requirement for "reasonable foreseeability of natural death". It would also expressly exclude persons suffering solely from mental illness.

But disability advocates believe that Bill C-7 sends a message that their lives are not worth living. “Our biggest fear has always been that having a disability would become an acceptable reason for state-provided suicide,” Krista Carr, of Inclusion Canada, told the House of Commons justice committee this week. “Bill C-7 is our worst nightmare.”

Catherine Frazee, of Ryerson University’s School of Disability Studies, says that the government is making it possible for people with disabilities to kill themselves while doing whatever it can to prevent suicide for everyone else.

“Why only us?” she asked. “Why only people whose bodies are altered or painful or in decline? Why not everyone who lives outside the margin?”

Roger Foley, a 45-year-old with a neurodegenerative disease that has left him hospitalized, unable to move or care for himself, recounted how he’s been denied home care and allegedly been pressured by hospital staff to seek an assisted death. “My life has been devalued. I have been coerced into an assisted death by abuse, neglect, lack of care and threats,” said Foley.

He has launched a court challenge based on his right to an “assisted life.”

Carr told the committee that “every national disability organization is opposed” to Bill C-7 but their voices are “are getting drowned out by people who do not experience the systemic marginalization, the poverty and the very difficult lack of supports and life circumstances that people with disabilities experience that lead them into situations where MAID is either promoted to them or they feel like it’s their only option.”

Unsurprisingly, not everyone with a serious disability is opposed to the amendments. Steven Fletcher, a former federal MP and cabinet minister said that the notion of protecting the vulnerable is “insulting” and “condescending.”

Fletcher, who became a quadriplegic at 23 after his car hit a moose, believes people with disabilities should have right to decide when their suffering has become intolerable, just like everyone else.

Michael Cook is editor of BioEdge



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November
18
 

Mother blocks – temporarily – transgender treatment in BC

A Supreme Court judge in British Columbia stopped doctors from performing a “gender-affirming” double mastectomy on a 17-year-old Vancouver girl. The girl’s mother had appealed to the court for an injunction, which Justice Shelley C. Fitzpatrick granted for three weeks.

The teenager began hormone treatment in July as part of her transition and was scheduled to have her breasts removed.

Her mother, A.M., believes that her daughter has been "caught up in a fad". She criticised a BC school program, SOGI 123, for "pushing depressed and anxiety-ridden girls to gender-change clinics when what they need is psychiatric care."

A.M. also wants the court to prevent her daughter’s doctor from administering puberty blockers.

"Worst of all, the law lets it all be kept secret from parents. Why is the College of Physicians and Surgeons of British Columbia permitting this?"

A.M.’s lawyer, Carey Linde, told CTV News that "The right of the parent to be in charge of their children is the core of Western civilization."

Trans rights activist Morgane Oger disagreed. She said that the judge should not have granted an injunction of even three weeks given that a similar case last year failed. "The laws don't have exceptions for parents with strong feelings," Oger said. "The Supreme Court has decided this, the Appeals Court has decided this – we're not going to let a parent veto a child's medical care, whether it's an abortion, or transgender-specific care, or access to a prescription, or access to a transplant."

Michael Cook is editor of BioEdge



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November
18
 

Military doctors who treated Trump are caught in a web of dilemmas

President Donald Trump’s brush with Covid-19 raised a number of questions related to medical ethics. He received a cocktail of drugs, including experimental treatments which are not normally available to the public. He had to receive emergency approval from the US Food and Drug Administration. His doctor, Navy Commander Sean Conley, told the public only what the President wanted him to say.

Without mentioning Mr Trump’s name, Elliott J. Crigger, an ethicist at the American Medical Association, has published a scathing commentary on the ethics of the President’s highly public treatment in the Hastings Center Bioethics Forum.

First, he acknowledges that POTUS is a most unusual patient. Everyone has a right to confidentiality, but the public – the whole world – has a stake in his health.

Similarly, the physician of POTUS may easily have divided loyalties. As a doctor, he should respect the patient’s interests; as a military officer, he has to follow the orders of his Commander-in-chief.

not respecting the president-patient’s preferences for care when they do not coincide with the physician’s best professional judgment is to decline a direct order from the commander-in-chief; providing treatment that the physician believes will not achieve the desired goals of care contravenes the ethics of medicine.

So should Commander Conley have prescribed Regeneron's REGN-COV2, an experimental and unproven drug? In part, says Crigger, it depends on the circumstances – its likely benefit, its urgency, the risks, and the alternatives.

But he concludes, “As a matter of professional ethics, physicians are not required to offer or provide treatment they cannot be reasonably certain will benefit the patient nor to accede to a patient’s request for unproven treatment—even a patient who has the power, authority, and public significance of the president.”

In any case, making an experimental drug available to POTUS sends bad messages to the public. It encourages reckless use of untested drugs and it undermines a doctor’s obligation to ensure that all patients receive the same quality of care.

Michael Cook is editor of BioEdge



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November
14
 

Tasmanian politicians defer vote on euthanasia

A euthanasia bill passed in the upper house of the Australian state of Tasmania this week. Both sides of the contentious issue believe that it could also pass in the lower house, but Premier Peter Gutwein stepped in and requested a report from a committee of experts before a final vote.

According to The Australian, it now seems that the fate of the bill will not be decided before February or March next year.

“Should this legislation become law, it is incumbent on all of us to ensure that it is the best law possible and affords real protections for the most vulnerable in our community,” Mr Gutwein told parliament.

“Just as other jurisdictions have utilised independent processes to ensure such legislation is the most robust it can be, I have requested the University of Tasmania to establish an independent review panel to … provide their view regarding how this legislation compares to similar laws in other states and around the world.

“I have also requested UTAS to provide a view from the review panel in terms of end of life considerations, such as palliative care and advanced care directives … and what other steps could be considered prior to this legislation taking effect.”

The inquiry was backed by an independent member of the lower house, Madeleine Ogilvie, who has called for a study of how euthanasia will affect faith-based hospitals and nursing homes. She holds the balance of power.

The bill’s sponsor, upper house member Mike Gaffney, insisted earlier in the week that the bill should be passed as soon as possible. “In Tasmania, we’ve had bills in 2009, 2013, 2017 (all voted down) and now 2020. The bill should progress as quickly as it can downstairs and I’m sure the Premier will do that.”

Mr Gaffney said that his bill would force faith-based institutions to host euthanasia deaths. “They shouldn’t be able to (stop assisted dying) in a secular society,” he said. “I’d be concerned that any organisation, where you’ve had a person resident for years, would then at their time of need, say, ‘well, you’ve got to get up and go because it’s not part of our policy’.

“If this becomes law, it is … a legal choice, so why would any institution deny a person access to adequate or correct medical assistance? VAD is not suicide; it’s a legal, medical option.”

Michael Cook is editor of BioEdge



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November
07
 

Polish government backs down over abortion

In the face of massive protests, the government of Poland has delayed indefinitely the implementation of a law banning abortions of children with birth defects. The country’s supreme court ruled last month that this was unconstitutional, sparking huge demonstrations every day across the country.

The government, led by the conservative Law and Justice Party (PiS), is faced with a dilemma. A significant number of voters are passionate supporters of liberalising its abortion laws. The government supports the court, but it is under enormous pressure domestically and internationally to be more “progressive”. The New York Times described the protests as  “the most intense in the country since the 1989 collapse of communism”.

"The verdict made me feel like my country was spitting in my face. I broke down in tears, powerless," Natalia Broniarczyk, of a group called the Abortion Dream Team, told AFP.

The nightly demonstrations reflect fault lines in Polish society. “I think it is a whole backlash against a patriarchal culture, against the patriarchal state, against the fundamentalist religious state, against the state that treats women really badly,” Marta Lempart, one of the organisers of the demonstrations, said in The Guardian.

The leader of PiS, Jarosław Kaczyński, last week urged members to call for a defence of the Catholic Church “at all costs”. He also declared that the protests were “intended to destroy Poland”, and urged his supporters to fight for “Poland and patriotism” in order to avert “the end of … the Polish nation as we know it”.

Ewa Letowska, of the Polish Academy of Sciences and a former judge at the Constitutional Tribunal, the country’s highest court, told the NYTimes that the government’s delay was illegal. “The publication of the tribunal’s rulings is mandatory,” she said. “Although there were objections to the ruling, some of them legitimate, delaying the publication is unconstitutional.”

The Polish president, Andrzej Duda, once a supporter of severely restricted access, has backtracked a bit. He now favouring and exception for fetuses with “lethal” abnormalities. But this would still ban abortions in case of other conditions such as Down syndrome. This compromise does not appear to satisfy either side.    

Michael Cook is editor of BioEdge



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November
07
 

Election takeaways

The result of America’s 2020 presidential election is still unknown. It seems that Joe Biden has defeated President Donald Trump but weeks of recounts and lawsuits could lie ahead. However, a few bioethical developments have emerged from the fog of Tumultuous Tuesday.

It appears that the number of pro-life women in the House of Representatives will double. All 11 pro-life women incumbents were re-elected, and at least 13 new pro-life women will join them. At least seven of them flipped Democrat-held seats. Other pro-life gains are possible, because winners have not been declared in some seats. At least six pro-life women will serve in the US Senate. “We expect when all votes are counted and the races are called, we will have a record number of pro-life women serving in the next Congress,” declared Marjorie Dannenfelser, of Susan B. Anthony List. “These gains are a repudiation of abortion extremism and further evidence that life is a winning issue in politics.”

Louisiana voters approved an amendment to the state’s constitution which declares that there is no constitutional right to an abortion: “To protect human life, nothing in this constitution shall be construed to secure or protect a right to abortion or require the funding of abortion.” This measure is toothless and largely symbolic at the moment, however, under Roe v. Wade. There are only three abortion clinics currently operating in Louisiana. Tennessee, Alabama and West Virginia already have similar provisions in their constitutions.

California voters appear to have given a thumbs-up to Proposition 14, to refinance the California Institute for Regenerative Medicine. This authorises a bond issue for US$5.5 billion over the next 10 to 15 years. Although counting has not finished yet, officials reported that 51.1% of voters backed it.

Nature reports that most American scientists are dismayed by the results of the election. “Some scientists saw the deadlocked election as a sign of their own failure to communicate the importance of science, evidence and truth to the general population,” writes Jeff Tollefson. “Distrust of Trump within the scientific community stems from his rejection of climate science, his rollback of numerous environmental regulations and his mishandling of the COVID-19 pandemic, which has now killed more than 230,000 people in the United States. Nature’s own survey of its scientist readers demonstrated their condemnation for these actions: of the approximately 580 respondents eligible to vote, 87% said they would be doing so for Biden.”

Michael Cook is editor of BioEdge



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November
07
 

We need to move beyond vertebrate-centric bioethics, scholars argue

A long-standing prejudice based on feelings of disgust and speciesism has excluded non-vertebrate animals like octopuses and insects from moral consideration. But invertebrate brains comprise upwards of 99% of the brains on the planet, argue two philosophers in the journal Animal Sentience, and we need to treat them accordingly. It is time to end the “vertebrate dogma”.

Their contentions are supported by a good number of comments from other academics in a commentary section of the journal.

Part of the problem is that anachronistic views of evolution, which regard invertebrates as “lower” beings, continue to influence public policy and common morality, contend Irina Mikhalevich, of Rochester Institute of Technology, and Russell Powell, of, Boston University. But studies of invertebrate behaviour, especially of bees, suggest that they may have a rich inner life. They may deserve moral status.

“Honeybees can be taught addition and subtraction procedures, appear to have the concept of ‘zero’ and can learn to attend to global or local features of objects ... Bees and wasps can recognize human faces... One study suggests that ants can pass the mirror self-recognition test which human infants only pass at around 20 months of age. There is even tantalizing evidence of causal reasoning and means-end rationality in bees and transitive inference in paper wasps.”

They may even have feelings. “For example, bumblebees tend to interpret ambiguous stimuli more optimistically after exposure to a pleasant stimulus, just as humans tend to do when they are happy or calm. Conversely, vigorously shaking bees appears to induce a pessimistic bias in odor discrimination tests.” 

Obviously, the evidence that non-vertebrates have inner states is controversial and ambiguous, but isn’t it better for policy-makers to play it safe, the authors ask. “If the costs of falsely attributing sentience to animals are minor while the costs of false negatives are high (because, for instance, they result in a great deal of unnecessary suffering), then erring on the side of false positives is prima facie ethically preferable.”

But wouldn’t including invertebrates in the moral community impose ridiculous demands upon humans? Mikhalevich and Powell are adamant. “The fact that living up to our moral obligations is hard is a patently inadequate reason for failing to meet those obligations.” Besides, this does not mean that we must give equal moral consideration to all beings; it would probably be proportionate to their sentience.

There would be sticky situations, they acknowledge. “Whether harm to a small number of vertebrate subjects is morally preferable to harm to a large number of invertebrate subjects is unclear. But such questions should be resolved through an analysis of interest conflicts, not by according some legitimate interests no weight at all.”

Michael Cook is editor of BioEdge



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November
07
 

Assisted suicide is a reasonable excuse for overseas travel for locked-down Britons

Britain has entered a second period of hard lockdown to avert a wave of Covid-19 patients swamping hospitals. Holiday travel overseas is banned. However, Health Secretary Matt Hancock has said that visiting the Swiss assisted suicide clinic Dignitas will be permitted, as an exception.  

This follows consternation in the media over a woman with terminal breast cancer who advanced her booking with Dignitas because she feared that a travel ban would make it impossible. Under the lockdown regulations, travellers are only exempted for work, education or other legally permitted reasons.

Mr Hancock told Parliament: “The new coronavirus regulations place restrictions on leaving the home without a reasonable excuse. Travelling abroad for the purpose of assisted dying is a reasonable excuse, and so anyone doing so would not be breaking the law. The question of how we best support people in their choices at the end of their life is a complex moral issue that, when considered, weighs heavily upon us all.”

Mr Hancock has rejected calls for a review of current legislation which bans assisted suicide. However, he has agreed to have an online meeting with Noel Conway, a 71-year-old with motor neurone disease who has become a symbol of the movement for legalising it.

Mr Conway’s local MP, Daniel Kawczynski told Parliament: “As a Roman Catholic, I have recently changed my mind on this issue because of my constituent Mr Noel Conway who lives near Shrewsbury. I said to him, 'Why don't you go to Switzerland?' And his answer will stay with me forever: 'No, I'm an Englishman, I want to die in England.' And I think it's extremely important that our citizens have this right.”

Michael Cook is editor of BioEdge



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November
07
 

Welcome to the world of ‘platonic co-parenting’

Another chapter in the history of the reproductive revolution: platonic co-parenting. This involves two people conceiving (naturally or artificially) children and taking joint responsibility for raising them, but without marriage or living together. According to Susan Golombok, director of the University of Cambridge’s Centre for Family Research and author of We Are Family, a book examining novel family structures, this is a “new phenomenon picking up speed”.

The Guardian interviewed an American woman and a Canadian man who had discovered each other on a co-parenting website. “I really didn’t want a romantic connection; I thought it would convolute things,” says Jenica Anderson, who is co-parenting with Stephan DuVal. “I’d seen the traditional recipe not work out. We had a shared sense of direction – raising a happy child who makes it through life OK.”

“Unlike surrogacy … platonic co-parenting remains little understood and less spoken about,” says The Guardian. “Sites are overrepresented by members working in the media, senior civil service, law, medicine and banking, where privacy is prized, says Patrick Harrison, founder of PollenTree.com. ‘There are a lot of people in this country who probably don’t share a view that it’s a great thing, and they can be vocal,’ he says. ‘Our members keep a low profile because it’s nobody else’s business. They don’t need the rest of society to tell them it’s a good or bad thing.’”

Another woman told The Guardian that she wanted a child and she was running out of time on her biological clock: “For years, I wanted the big love. I ended up with a very broken heart, but still wanted a baby. I could have paid $500 at the sperm bank, but I was pretty sure I could do it for free. If I couldn’t have the big dream, this felt like the next best thing.”

Professor Golombok and her colleagues are tracking 50 of these arrangements in a study considering the impact on children. She thinks that they can work, despite the unusual difficulties. “Taking away romantic baggage could even make for a more stable environment,” she says.

Michael Cook is editor of BioEdge



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November
07
 

Al Jonsen, bioethics pioneer, dies

A pioneer in the novel field of bioethics, Al Jonsen, died on October 21, at the age of 89. According to one reviewer, he was the first person to be titled “professor of bioethics”.

From 1969 to 1972, Jonsen was president of the University of San Francisco. From 1974 to 1978 he served as a member of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. He co-authored the Belmont Report, published in 1979, which articulated ethical principles of beneficence, justice, and respect to govern human-subjects research. In 1980, he was elected to the National Academy of Sciences Institute of Medicine.

He also taught at the University of Washington, School of Medicine, from 1987 to 1999. After retiring he co-founded the Program in Medicine and Human Values at Sutter Health's California Pacific Medical Center in 2003.

Jonsen co-authored a classic text, “Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine,” published in 1982. Its toolkit included the "four-box method" to help clinicians make difficult ethical decisions.  

Like a surprising number of pioneer bioethicists, Jonsen’s career began in theology. He was ordained as a Jesuit Catholic priest in 1962. He left the priesthood in 1976 to marry.

However, he supported legalised abortion and helped the Kennedys reach an accommodation of their Catholic faith with growing public support for abortion. According to his book The Birth of Bioethics, he attended a meeting of notable Catholic dissident theologians in Hyannisport with Robert and Ted Kennedy in 1964: “The Kennedys hoped to formulate a political stance on abortion that would be compatible both with Catholic teaching and the political climate of the country.” Their advice after two days of palaver, he recalled later, threaded abortion through the eye of the Catholic needle:

“Catholic politicians in a democratic polity might advocate legal restriction on abortion, but in so doing might tolerate legislation that would permit abortion under certain circumstances, if political efforts to repress this moral error led to greater perils to social peace and order

This wise counsel probably helped to frame culture war debates for the next half century.

Michael Cook is editor of BioEdge



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November
07
 

Updating the Hippocratic Oath

The Hippocratic Oath seems to be evolving faster than the coronavirus. NPR highlighted a class oath written by incoming first-year medical students at the University of Pittsburgh School of Medicine during their orientation week.

“Their class oath, the first of its kind in our program’s history, speaks to the power and importance of clinical care and research in creating a more inclusive and just society,” said the school’s dean, Anantha Shekhar. The students also took the traditional oath, or a version of it.

What’s remarkable is the difference between the students’ oath and the traditional oath. The former addresses championing diversity in medicine and society, being an ally with the poor and marginalised and restoring trust in the health care community. Traditional bioethics concerns like abortion, conscience, euthanasia, confidentiality or sexual abuse are not mentioned.

“We start our medical journey amidst the COVID-19 pandemic and a national civil rights movement reinvigorated by the killings of Breonna Taylor, George Floyd and Ahmaud Arbery,” the oath begins. “We honor the 700,000+ lives lost to COVID-19, despite the sacrifices of health care workers.” And it continues:

I will support and collaborate with my colleagues across disciplines and professions, while respecting the patient’s vital role on the health care team.

I will honor my physical, mental and emotional health so as to not lessen the quality of care I provide. 

I will carry on the legacy of my predecessors by mentoring the next generation of diverse physicians.

I will recognize the pivotal role of ethical research in the advancement of medicine and commit myself to endless scholarship with the ultimate goal of improving patient care.

I will care for my patients’ holistic well-being, not solely their pathology. With empathy, compassion and humility, I will prioritize understanding each patient’s narrative, background and experiences while protecting privacy and autonomy.

I will champion diversity in both medicine and society, and promote an inclusive environment by respecting the perspectives of others and relentlessly seeking to identify and eliminate my personal biases.

I will be an ally to those of low socioeconomic status, the BIPOC community, the LGBTQIA+ community, womxn/women, differently-abled individuals and other underserved groups in order to dismantle the systemic racism and prejudice that medical professionals and society have perpetuated.

I will educate myself on social determinants of health in order to use my voice as a physician to advocate for a more equitable health care system from the local to the global level.

I will restore trust between the health care community and the population in which I serve by holding myself and others accountable, and by combating misinformation in order to improve health literacy.

In making this oath, I embrace the ever-changing responsibilities of being a physician and pledge to uphold the integrity of the profession in the clinic and beyond.

The growing trend of taking oaths composed by medical students themselves may indicate that they are taking their ethical commitment to the profession seriously. However, as an article in Academic Medicine pointed out: “if students at the same school are swearing to different oaths year-to-year, are those schools sending mixed messages to their students—that medical oaths are ultimately flexible documents that can be shaped in whatever manner the swearer wishes?” 

Michael Cook is editor of BioEdge



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October
31
 

New Zealand will soon have legal voluntary euthanasia

New Zealand has become the latest jurisdiction to legalise euthanasia. The issue appeared as a referendum question in the October 17 general election which swept popular Prime Minister Jacinda Ardern back into office with a clear majority.

The results have taken two weeks to count and the final result will not be known until November 6. However preliminary results released by the electoral commission on Friday indicated that 65.2% of eligible voters backed the legalisation of euthanasia, with only 33.8% opposed.

Although some 480,000 special votes remain to be counted, the margin is so great that they cannot affect the final outcome. The act will come into effect exactly one year after the final results are announced – November 6, 2021.

A second referendum question on the legalisation of cannabis did not succeed.

The new law has had a complicated gestation. New Zealand’ unicameral parliament passed an End of Life Choice Act in 2019, but then it had to be ratified by a national referendum.

The act outlines criteria for who can apply to end their life. The patient must be 18 or over, New Zealand citizens, suffering from a terminal illness that will end their life within six months, “have a significant and ongoing decline in physical capability”, “enduring unbearable suffering that cannot be eased” and in a position to make an “informed decision” about their death.

Those suffering mental illness or decline would not be eligible, nor would those applying solely on the basis of “advanced age” or a disability. Two doctors – one independent – would have to sign off on the decision, with a psychiatrist called in if either doctor has any doubts.

MP David Seymour, who sponsored the bill, said that New Zealand has fallen “decades” behind the most progressive countries in the world. “I think it’s time New Zealand moved towards being a more compassionate and tolerant society,” he told the Guardian.

Euthanasia-Free NZ, which campaigned against the law, was disappointed and said that most voters misunderstood the Act. A poll before the referendum suggested that only 20% of voters understood that the Act would not make it legal to turn off machines that are keeping people alive. “It seems that most New Zealanders voted for an end-of-life choice that is in fact already legal,” said Renée Joubert, of Euthanasia-Free NZ.

Only 35% knew that euthanasia would be available to terminally ill people who had no physical pain. Only 29% were aware that terminally ill people who meet all the eligibility criteria, but also have depression or another mental illness, would be allowed euthanasia. Only 13% realised that the Act does not require independent witnesses.

Unlike US, Canadian and Australian laws, the New Zealand legislation requires no independent witnesses when a person signs their euthanasia request in front of the doctor and no cooling-off period before the lethal dose is prescribed. It doesn’t require a competency test at the time of receiving the lethal dose.

New Zealand has become the fifth country to legalise euthanasia, along with the Netherlands, Belgium, Luxembourg, and Canada. Several American states, two Australian states, and Switzerland permit assisted suicide.

Michael Cook is editor of BioEdge



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October
31
 

Poland still racked by protests over abortion

The fury on the streets about Poland’s tougher restrictions on abortion has not subsided.

Tens of thousands of protesters took part in rallies in Warsaw and other cities on Friday. The streets have been filled with demonstrators every day since last Thursday when the nation’s highest court banned abortions for unborn children who have congenital defects. According to official statistics, this is the most common reason for the 1,110 legal abortions recorded last year.

Marta Lempart, co-founder of Women's Strike, and one of the principal organisers of the protests, told Deutsche Welle: "We're prepared to fight till the end." Her goal is to force the resignation of the government. She also wants the Constitutional Tribunal's ruling declared invalid due to what is perceived as the court's fealty to the executive branch.

The protests have ugly ideological overtones. In this predominantly Catholic country, the demonstrators’ rage has been directed at the Church. Protesters have disrupted Masses, verbally abused priests, graffitied churches, and defaced memorials to John Paul II. Right-wing groups have responded by defending churches and disrupting some demonstrations. We are "in the middle of a neo-Bolshevik revolution," said head of a radical nationalist association named Marsz Niepodleglosci (Independence March) in front of a church in Warsaw. "The time for peace and tolerance for barbarians is over."

Poland's president, Andrzej Duda, who supported the ban on abortion for foetal abnormality, now appears to have changed his mind. Now he believes that women should have the right to abortion in some cases. “It cannot be that the law requires this kind of heroism from a woman,” he said in an interview with radio RMF FM. The president said he still favours outlawing abortion if a foetus has a non-lethal congenital defect.

Michael Cook is editor of BioEdge



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October
31
 

Ombudsman slams euthanasia in Canada’s prisons

Canada’s prison ombudsman has recommended an absolute moratorium on providing “assisted dying” inside a federal penitentiary.

In his annual report, Ivan Zinger acknowledged there have been three known cases of doctor-assisted death in federal prisons, two of them in the 2019-20 reporting period. His office found a series of errors and delays and the misapplication of law and policy in both.

The first case involved a “a non-violent recidivist” serving a two-year sentence. A decision to deny him full-day parole was almost certainly a factor in his request for MAiD, as medical assistance in dying is termed in Canada. “The decisions to deny parole and then provide MAiD in a prison setting seem out of step with the gravity, nature and length of this man’s sentence,” said Zinger.

Prison authorities took a very detached view of the prisoner. They were bound to respect a request from a competent patient, they told the ombudsman.

But Zinger was sceptical. “It would seem that this man ‘chose’ MAiD not because that was his ‘wish,’ but rather because every other option had been denied, extinguished or not even contemplated. This is a practical demonstration of how individual choice and autonomy, even consent, work in corrections,” he wrote.

The second case involved a dangerous offender who was mentally ill, terminally ill and suicidal. There was no prospect of his release. Zinger points out that he lived in a different world from other citizens:

Hopelessness, despair, lack of choice and alternatives, conditions imposed by the fact and consequence of incarceration, are issues magnified in the correctional setting. As the Government considers extending MAiD beyond physical illness to intolerable psychic pain, there must be careful deliberation of the mental health profile of Canada’s prison population. For prisoners, matters of free choice are mediated through the exercise of coercive administrative state powers. There is simply no equivalency between seeking MAiD in the community and providing MAiD behind prison walls

Mr Zinger says the government should set up an expert committee to consider the ethical and practical concerns in providing medically assisted death in prisons and suggest policy and law changes.

Michael Cook is editor of BioEdge



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October
31
 

High cancer risk for IVF babies

Children conceived with IVF have a higher risk of developing cancer than those conceived naturally, according to a study published in the journal JAMA Network Open this week. “The increased risk was 2-fold higher for children conceived via in vitro fertilization than for children conceived naturally,” say the authors.

"IVF-conceived children are at about one-third greater risk of birth defects compared to their naturally-conceived counterparts, as well as at higher risk of childhood cancer, although in absolute terms these numbers are small," the lead author, Barbara Luke, of Michigan State University, East Lansing, told MedPage Today.

"An unresolved question in assisted reproduction research remains the contribution of parental versus treatment factors to adverse outcomes," Luke said..

The researchers used birth data from Massachusetts, New York, Texas and North Carolina between 2004 and 2016. They cross-referenced them with birth defect registries, cancer registries, and reported clinical results from the Society for Assisted Reproductive Technology. They only considered babies conceived with their parents' gametes, excluding frozen gametes, to get as close as possible to the conditions of natural conception.

Finally, they ruled out babies born before 22 weeks of pregnancy or weighing less than 300 grams. The study thus covered more than a million children conceived naturally and approximately 53,000 conceived by in-vitro fertilization.

The researchers found several notable differences between the two groups.

  • 1.8% of babies conceived naturally have congenital malformations, compared to 2.4% in the group of babies conceived by IVF,
  • All babies with non-chromosomal abnormalities have a higher risk of cancer. The risk is multiplied by 2.07 for babies conceived naturally and by 4.04 for IVF babies.

“With IVF births rising worldwide, further investigations into these associations are warranted,” the authors write.

Michael Cook is editor of BioEdge



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October
31
 

Brains in a dish pose ethical problems

A recent feature in Nature opens with the following sentence: “In Alysson Muotri’s laboratory, hundreds of miniature human brains, the size of sesame seeds, float in Petri dishes, sparking with electrical activity.”

Dr Muotri, a Brazilian researcher working at the University of California, San Diego, is investigating what makes us uniquely human. The obvious answer is the brain, so he is studying it from an evolutionary and developmental perspective and differentiating stem cells to recreate "brain organoids" in his lab.

His research is quite innovative. For instance, he has compared the DNA of Neanderthals (taken from the fossil record and DNA samples from bones) with our DNA. This could give clues about why Neanderthal social, cultural and technological development was more limited and why they became extinct. This might lead to insights into mental health.

However, what his website blurb skates over is the difficult ethical questions arising from creating brain organoids. Nature points out that some scientists and ethicists argue that some experiments with organoids should not be allowed.

It appears that most researchers believe that it would be unethical to create organoids which have some degree of consciousness – disembodied brains floating in a petri dish. However, there’s very little agreement about what consciousness is. Philosophers have clashed over this for centuries; neuroscientists have been no more fortunate in reaching a conclusion. In the meantime, researchers like Muotri are forging ahead. He believes that he might need to create consciousness as part of his research.

In his view, brain organoid research offers no special difficulties. “We work with animal models that are conscious and there are no problems,” Muotri told Nature. “We need to move forward and if it turns out they become conscious, to be honest I don’t see it as a big deal.”

This horrified Wesley J. Smith, bioethics writer at National Review: “That crass attitude illustrates the huge peril biotech could pose to human decency. As the great moral philosopher Leon Kass once wrote, ‘shallow are the souls that have forgotten how to shudder.’”

Michael Cook is editor of BioEdge



This article is published by 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
31
 

Japan’s new PM promotes IVF to boost birth rate

Japan's biggest long-term problems are a low birth rate and a shrinking population. Incoming Prime Minister Yoshihide Suga has pledged to provide insurance coverage for infertility treatments.

He will also promote paternity leave for working fathers to ease the burden on working mothers. He has promised more help for single-parent households, more than half of which are living in poverty.

Japan’s total fertility rate — the average number of children born per woman during reproductive years — was 1.36 in 2019. The government hopes to raise the rate to 1.8.

However, experts say that the policy will not be a panacea for reversing the nation’s declining birth rate, especially in the middle of the Covid-19 pandemic when many people are suffering financially.

Suga’s precedessor, Shinzo Abe, regarded the rapidly ageing population and falling number of births as a “national crisis,” and introduced free preschool education and day-care services.

Michael Cook is editor of BioEdge



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October
31
 

Artificial reproduction may require redefinition of parenthood

Developments in assisted reproduction could muddle the definition of parenthood, says an Australian academic in a recent issue of the journal Bioethics. Hilary Bowman-Smart, of the Murdoch Children’s Research Institute in Melbourne, examines a number of different scenarios for creating children other than natural reproduction. “Through a series of cases involving technologies such as cloning and genome editing, we see that in lieu of the traditional two parents, there are possible beings who have no genetic parents, one genetic parent, or many genetic parents,” she writes.

Rather than the traditional mother and father, she points out that, with emerging possibilities of reproduction, parenthood could be arbitrarily deemed to be a certain threshold of a child’s genetic heritage, probably between 80% and 20%. The scenarios she describes are interesting:

  • A man wants to clone himself. Is he the parent of the clone? Is he the parent of a clone of the clone?
  • A man wants to reproduce. The child’s genetic inheritance is half his and half artificially construction in a lab. Who is the other parent?
  • A man wants to reproduce with a partner. The partner is unwilling so the man steals the partner’s DNA. Is the partner a parent?
  • A man wants to reproduce, and he wants a child who is a superlative athlete. He employs a technician to create a child with the necessary genes, none of which are his. He project managed the child, but is he a parent?
  • A couple wants a genetically-modified child with so many gene modules that their own contribution falls below the threshold. Are they parents?
  • Three embryos are fused to create a chimera human, with six genetic progenitors, although the brain, the gametes and the heart have different genomes. Who is the main parent?

All these scenarios are highly theoretical, although not completely implausible. Bowman-Smart’s point is basically a simple one. Parenthood is becoming very difficult to define, given advances in technology. It might be better to retreat from a genetic understanding of parenthood and embrace a social model. As she concludes:

We should prioritize other methods of determining parenthood in these complex cases, such as social roles, and/or look to other familial structures or kin relationships that can meet the need of the child. Mary may be the genetic parent of Jane, or she may not. However, at the end of the day, it is Mary who puts Jane to bed each night, and perhaps that is what truly matters.

Michael Cook is editor of BioEdge



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October
24
 

Poland’s high court effectively bans abortion

Protesters against Court decision fill streets

A ruling by Poland’s highest court has effectively banned most abortions in a country where there are only about 2,000 a year.

In an 11 to 2 decision, the Constitutional Tribunal declared that abortion due to foetal defects is unconstitutional. It will only be permitted in cases of rape, incest or threats to the mother’s health and life. These constitute about 2% of legal terminations in recent years -- 1,074 of 1,100 abortions performed in 2019 – and are mostly Down syndrome babies.

The decision was immediately criticised by the commissioner for human rights for the Council of Europe, Dunja Mijatović, who decried it as “a sad day for women’s rights”.

The former liberal Polish premier and PiS critic Donald Tusk called the timing of the abortion issue “political wickedness”. “Throwing the topic of abortion and a ruling by a pseudo-court into the middle of a raging pandemic is more than cynical,” said Tusk, who is now the head of the European People’s party.

The governing Law and Justice party (PiS) will probably pass legislation banning abortions in the case of foetuses with congenital birth defects.

An attempt by the PiS government to tighten the abortion law in 2016 after nationwide protests. So PiS legislators asked the Constitutional Court to rule on the legality of abortion for birth defects.

The country of 38 million people has fewer than 2,000 legal abortions a year, but women’s groups estimate that tens of thousands are performed illegally or abroad.

Few media reports looked into the Court’s reasoning. In language familiar to protesters in the US and UK over the past year or so, it condemned eugenics. It contended that terminating pregnancy due to defects of the foetus amounted to eugenics – a sensitive issue in a country which suffered so much under Nazi occupation.

The children’s rights commissioner, Mikołaj Pawlak, supported the decision. He said that “eugenic” abortion amounts to “denying the right to life” as it “allows for the killing of an unborn child solely on the basis of suspicion of a serious disease”.

Pawlak noted that the current law allows for termination in the case of abnormalities such as Downs syndrome, which is not a life-threatening condition. He also observed that the number of abortions has been steadily rising, from 499 in 2008 to 1,110 in 2019.

Michael Cook is editor of BioEdge



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October
24
 

‘Medical aid in dying’ saves money: Canadian report

Since Canada’s law on euthanasia and assisted suicide came into effect four years ago, health-care costs have dropped millions of dollars, according to a Parliamentary Budget Officer (PBO) report.

The report on assisted dying calculates that since becoming legal on June 17, 2016, Canada's health-care costs have dropped C$86.9 million. “The total net reduction in costs from current legislation plus the incremental savings from bill C-7 will add up to $149.0 million,” the report says. “While this amount may appear significant, it only represents 0.08% of total provincial health care budgets for 2021.”

Although this could sound grotesquely utilitarian, it stresses that these savings should "in no way be interpreted" to suggest that assisted dying be used to reduce health-care costs.

Many studies have shown that health-care costs in the last year of life, and especially the last month, are "disproportionately high," the PBO report stated. The costs represent between 10 and 20% of total health-care costs despite those patients representing about 1% of the population.

The assumptions in the calculations of cost-savings in 2021 are as follows:

  • Medically assisted deaths will represent 2.2% of all deaths;
  • 51% of patients will be male;
  • 13% will be between 18 and 59 years old, 50% between 60 and 79, and 37% 80 years old and over;
  • 66% will have cancer as the main underlying condition;
  • 14% will see their life shortened by 2 weeks, 25% by one month, 45% by three months, 13% by six months and 3% by a year.

The government statisticians have gathered some very revealing figures. For instance, it took 16 years for “medically assisted deaths” in Belgium to rise from about 0.2% of all deaths in 2003 to about 2.4% in 2019. But in Canada they are forecast to rise from about 0.3% in 2016 to 2.6% in 2021 – a mere five years.

Alex Schadenberg, of the Euthanasia Prevention Coalition, in Canada, estimates that 19,000 Canadians have died since legalisation.

The government has until December 18 to amend the law to comply with a Quebec court ruling year that it is unconstitutional to allow euthanasia only for people whose natural death is “reasonably foreseeable”.

Michael Cook is editor of BioEdge



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October
24
 

IVF doctors up in arms over Trump’s SCOTUS pick

Medical and science journals have become far more politically active under the Trump Administration. The world’s most respected science publication, Nature, recently announced that it planned to rachet up its political advocacy to protect scholarly independence. Although it is often remarked that “political science” is an oxymoron, it even plans to publish more primary research in this area.

Following in Nature’s footsteps, perhaps, Fertility and Sterility, the voice of the American Society for Reproductive Medicine, has blasted President Trump’s nominee for the US Supreme Court, Amy Coney Barrett.

In the 70-year history of Fertility and Sterility, there has never been a statement published on the seating of a U.S. Supreme Court justice. We feel that with the vacancy of Ruth Bader Ginsberg’s seat on the Supreme Court, women’s constitutional rights are in jeopardy. The nomination of the justice under consideration is of such peril that we write these words of grave concern today.

The statement puts the late Justice Ruth Bader Ginsberg on a pedestal as a champion of equality for women and reproductive choice. Beside RBG, ACB cuts a sorry figure.

Our distress in the specter of Barrett’s future repeal of legislature surrounding reproductive choice derives from her public record of elevating her own personal beliefs regarding human reproduction over science, a devastating threat to women’s liberty and reproductive choice.

The ASRM fears that ACB could put its members out of business in a huge and growing market. The industry is estimated to be worth US$25 billion globally and it could grow to $41 billion by 2026.

Frighteningly, any procedure that might risk the embryo’s viability would put physicians at risk for criminal violation. Letting supernumerary embryos go or those that were aneuploid or affected with a single gene disorder would be illegal. Physicians would be forced to transfer all embryos, resulting in greater health risk to women and lower pregnancy rates as has been repeatedly demonstrated in countries that do not impose these restrictions. Scientific advances in the field would come to an immediate and devastating halt without the ability to continue reproductive research.

Although Judge Barrett refused to answer questions about IVF, abortion and contraception during her confirmation hearings in the Senate, her critics point to the fact that she signed an advertisement in 2006 which opposed “abortion on demand” and defended “the right to life from fertilization to the end of natural life.”

Michael Cook is editor of BioEdge



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October
24
 

Let’s return to the basics of human experience, says bioethicist

It’s not often that a bioethics text gets rave reviews from both Francis Fukuyama and Leon Kass. However, What It Means to Be Human: The Case for the Body in Public Bioethics, from Harvard University Press seems to be making waves.

According to a review in Oxford’s Practical Ethics blog by Charles Camosy, the author, Carter Snead, of Notre Dame University, is about as important a contemporary voice in bioethics that we have today.. Hie basic argument in What It Means to Be Human runs like this:

“Most of public bioethics—perhaps for understandable reasons flowing from the dramatic failures of medical ethics during the 20th Century—has an “incomplete and false vision of human identity and flourishing. It is a vision that defines the human being fundamentally as an atomized and solitary will [original emphasis].” It equates human flourishing solely with the capacity to formulate and pursue future plans of one’s own invention. Our legal understanding of issues related to public bioethics now tragically “views the natural world and even the human body itself as merely inchoate matter to be harnessed and remade in the service of such projects of the will.”

Snead contends that ideology which privileges autonomy captures important truths about human freedom, but it also means that we have no obligations to each other unless we actively, voluntarily embrace them. Under such circumstances, the neediest must rely on charitable care. When it is not forthcoming, law and policy cannot adequately respond.

He addresses three complex issues in bioethics: abortion, assisted reproductive technology, and end-of-life decisions. Avoiding typical dichotomies of conservative-versus-liberal and secular-versus-religious, he recasts debates over these issues and situates them within his framework of embodiment and dependence.

Snead concludes that if the law is built on premises that reflect a fully lived reality of life, it will provide support for the vulnerable, including the unborn, mothers, families, and those nearing the end of their lives. In this way, he argues, policy can ensure that people have the care they need in order to thrive.

In an interview with Camosy in Crux, Snead explains:

I propose virtues and practices necessary to build up … networks of “uncalculated giving and graceful receiving” on which we all depend for our survival and flourishing. Put most succinctly, I argue that by virtue of our embodiment, we are made for love and friendship. And for public bioethics to be just and humane, it must be built upon this truth.

Michael Cook is editor of BioEdge



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October
24
 

What factors can undermine our autonomy?

The argument for assisted suicide and euthanasia rests squarely on the doctrine of autonomy. As The Economist has pointed out: “Some activists for the rights of the disabled regard the idea that death could be better than a chronic condition as tantamount to declaring disabled people to be of lesser worth. We regard it as an expression of their autonomy.”

But even if this is granted, how do we know that people are really making an autonomous decision to end their lives? Addiction, brainwashing, trauma or fatigue obviously diminish personal autonomy. Are there other factors?

Two Australian bioethicists tackle this problem in the Journal of Law, Medicine & Ethics. They contend that depression, demoralisation, existential distress and family dysfunction can undermine agency, an essential component of autonomy. Physician-assisted dying:

without appropriate assessment of the agency of individuals would be a failure to respect their personal autonomy. Moreover, the legal frameworks designed to protect this autonomy should establish not only adequate decisional capacity but also prove positively the person’s ability to act with unaffected and undamaged agency. Without true agency, there can be no genuine autonomy.

The authors, George Mendz and David Kissane, point out that “loss of meaning or purpose in life,” “a bleak pessimistic outlook on the future,” “perception of a limited prognosis,” “desire for death or loss of will to live” – familiar factors in discussions of “assisted dying” – subvert agency. Family dysfunction can also contribute to limited insight which undermines agency.

Although the request for death may be expressed freely, their circumstances disempower them from determining their own motives. The motivation to act can be forced upon them by their impaired perception of their own situation. Not being able to appreciate their own motives, they are not self-governing agents.

In an accompanying commentary, the well-known bioethicist Tom L. Beauchamp, of Georgetown University, who has often deployed autonomy to defend the right to die, takes issue with Mendz and Kissane.

There are many good reasons to request assistance in dying, and there is no reason to presume that anyone who wishes to die does not have good reasons or does not have the necessary capacities to make an autonomous choice. Good reasons are found in many last-resort situations.

Michael Cook is editor of BioEdge



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October
24
 

US: foetal abduction to end with a lethal injection

Lisa Montgomery

Capital punishment is always a bioethical issue – but there are few cases more strikingly related than Lisa Montgomery, who is scheduled to be executed with a lethal injection in a federal penitentiary in Terre Haute, Indiana, on December 8.

Ms Montgomery’s crime was horrific. In 2004 she drove from Kansas to neighbouring Missouri to meet a pregnant woman named Bobbie Jo Stinnett. She strangled Mrs Stinnett, cut the baby out of her womb and returned home where she claimed that the baby was her own.

She was quickly arrested and charged with “kidnapping resulting in death”, which is a federal crime. She will be the first woman to be executed in a federal prison in 67 years.

This is a very rare crime, but according to Wikipedia “foetal abduction” seems to happen every couple of years in the US.

Unsurprisingly, Ms Montgomery had a very disturbed background. Her stepfather repeatedly raped her from the time she was 11 years old. Her mother prostituted her to older men. She married her stepbrother when she was 18, had four children, and then was pressured into an involuntary sterilisation. 

Sandra Babcock, of the Cornell Center on the Death Penalty Worldwide, acknowledges that the facts of the crime are incontrovertible, but argues that Ms Montgomery is too mentally disturbed to deserve execution:

According to her attorneys, Lisa continues to suffer from a reality-distorting mental illness, and this alone is reason to stay her execution. Dr. Katherine Porterfield, a renowned expert on torture and trauma, testified that the impact of Lisa’s sexual abuse was “massive,” and that her dissociative disorder was one of the most severe cases she has ever seen. But the deeper question is this: should the United States execute a woman whose history of sexual torture and child prostitution was dismissed as “the abuse excuse,” and whose poor parenting skills were trotted before the jury as one of the reasons to kill her?

Michael Cook is editor of BioEdge 



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October
17
 

Spain edges closer to legalizing euthanasia

Spain’s coalition government is attempting to legalise euthanasia and assisted suicide. Its right-to-die bill includes an "express euthanasia" service, with doctors visiting chronically ill patients at home, as well as in hospitals and clinics.

The government also intends to shorten waiting times between requesting and receiving euthanasia, to simplify consent rules, even for patients who have lost mental capacity, and to apply the law retrospectively so that doctors will not be punished for performing euthanasia before the law is passed.

Euthanasia was among the electoral pledges made by the two parties in Spain's ruling coalition. The legislation was introduced in January, but progress was delayed until September by the Covid-19 pandemic. The legislature's lower chamber has approved the bill.

The Senate will have a chance to negotiate some amendments.

The bill is taking some heat from bioethics experts.

Members of the Spanish Bioethics Committee have unanimously opposed it in a 74-page report by the committee, an agency of the Ministry of Health, Social Care and Equality.

"To legalize euthanasia and/or assisted suicide implies the initiation of the devaluing of human life, whose boundaries are difficult to predict," said the report.

"Euthanasia and assisted suicide are not signs of progress but rather a regression of civilization … In the context in which the value of human life is already often conditioned by criteria of social utility, economic interest, family responsibilities ... the legalization of early death would add a new set of problems."

Shortly thereafter, 160 legal experts warned that the law would be unconstitutional. They claimed that it "poses a serious threat to the safety of the oldest and sickest people in society”. Euthanasia is “contrary to the dignity of the human person and to the most fundamental rights inherent to it, guaranteed by the Constitution and international human rights law.”

Michael Cook is editor of BioEdge



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October
17
 

South Korea to loosen restrictions on abortion despite low birth rate

A bill to decriminalize abortion up to the fourteenth week of was tabled in the South Korean parliament this week.

South Korea has banned abortion since 1953. Exceptions were introduced in 1973, especially in cases of rape or incest. However, the Constitutional Court overturned the ban in April last year, considering that it restricted women's rights. The government has been ordered to draft a new law.

The draft bill bans abortion after 14 weeks except in cases of rape or incest, if the mother's health is at risk, or if the foetus shows signs of severe birth defects. Under these circumstances, it would be allowed up to 24 weeks.

Even if it is not legal, abortion is still common. According to the Health Ministry, 30 out of every 1,000 Korean women between the ages of 15 and 44 had an abortion in 2005. This put South Korea in the top three countries for abortions per capita, only behind Russia and Vietnam.

Pro-life critics oppose the new legislation on the grounds that all life is sacred and should be protected. Feminists, however, believe that it does not go far enough. "Women's organizations are very critical of the plan as the government is still maintaining a policy of regarding women as the ones who need to be controlled, not individuals who have the right to decide their sexual and reproductive health," Oh Kyung-jin, of the Korean Women's Associations United told Deutsche Welle.

South Korea's fertility rate, at 1.1 births per woman, is the lowest of 198 countries and, according to the 2020 United Nations Population Fund report, far behind the global average of 2.4 births per woman.

Michael Cook is editor of BioEdge



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October
17
 

A modern sultan boasts his virtual harem

In the age of the Reproductive Revolution, it’s an antiquated approach, but it works. An American named “Joe” claimed on British television that he has had 150 children scattered all over the world conceived through natural sex. “It’s more than the average person but there are people who have more. There’s some sultans out there who have more,” he told The Sun.

Lesbians, singles or women with infertile partners contact him by Facebook or email and ask for his services. "I started donating sperm in 2008 and have fathered on average 10 children per year. I have always said I wouldn't father more than 2500 but that would technically be impossible unless I live until the age of 250. I aim to donate my sperm for as long as it works which could be until I'm in my 90s."

This, apparently, is not all that unusual. Tom, a 40-year-old man in Britain has also appeared on television to admit that he has fathered 42 children with women he doesn’t know, although his technique is to give his clients a vial of fresh sperm. He advertised his services online after learning about shortages at sperm banks.

Inadvertent incest is an issue, he admits. But he has a solution. “We have a Facebook group that the people I’ve helped are in. I’ve also created anonymous ways for them to be able to check if a person might be a half-sibling, using encryption.”

Even though frozen, disease-tested sperm is available through fertility clinics, it appears that some women prefer methods which are just a bit more traditional to conceive children. Perhaps the real reproductive revolution is not novel technology, but changing social mores.

Michael Cook is editor of BioEdge



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October
17
 

Quick and faulty research a problem for journals in Covid-19 pandemic

The Covid-19 pandemic has created a flood of potentially substandard research amid the rush to publish, with a string of papers retracted or under a cloud and a surge in submissions to pre-print servers where fewer quality checks are made, a leading ethicist has warned in the Journal of Medical Ethics.

This has implications for patients, clinicians, and potentially government policy, says Katrina Bramstedt, of Bond University, in Australia, and Secretary General at Luxembourg Agency for Research Integrity.

The rapid spread of Covid-19 and its transition into a global pandemic propelled researchers to begin the search for treatments and vaccines in earnest. Scientific and medical Journals have since been flooded with submissions, while thousands of papers, which have not undergone thorough quality checks, have been posted on preprint servers.

As of 7 May 2020, 1221 studies on Covid-19 were registered on the international clinical trial registry site, ClinicalTrials.gov. And as of 31 July 2020, 19 published articles and 14 preprints about Covid-19 have been retracted, withdrawn, or had serious doubts raised about the integrity of their data, formally known as an expression of concern.

Over half of these papers came from Asia. But as Bramstedt points out: "No research team is exempt from the pressures and speed at which Covid-19 research is occurring. And this can increase the risk of honest error as well as deliberate misconduct."

But there are also implications for patients. "Patient harm that is significant, permanent and irreversible could result from using faulty research results from preprints as well as published papers," she says.

The rush to publish means there is less time for quality checks by researchers and their supervisors and for thorough reviews of study applications by research ethics committees, says Professor Bramstedt.

Journals, too, rely on a fleet of peer reviewers, all of whom work on a voluntary basis and have competing demands on their time.

To counter these issues, the author suggests that the efficiency of the submission process should be tightened up and that research ethics and integrity training be mandated for all researchers. They should also be trained in issues like authorship disputes, image manipulation, citations and referencing, informed consent, ethical participant recruitment, etc.

Michael Cook is editor of BioEdge



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October
17
 

CRISPR scientists win Nobel Prize in chemistry

To no one’s surprise, the Nobel Prize in Chemistry was awarded this year to Emmanuelle Charpentier and Jennifer A. Doudna for their 2012 discovery of CRISPR/Cas9 genetic scissors.

This development allows scientists to do precision editing of the DNA of animals, plants and microorganisms. “This technology has had a revolutionary impact on the life sciences, is contributing to new cancer therapies and may make the dream of curing inherited diseases come true,” says the Nobel committee. “These genetic scissors have taken the life sciences into a new epoch and, in many ways, are bringing the greatest benefit to humankind.”

Amongst CRISPR’s most ethically contentious applications is editing the human germline, which could lead to manipulating human abilities and even to a “new” human species. At the moment this is science fiction – but no longer purely science fiction.

Doudna, who works at the University of California Berkeley, is not opposed to such developments in theory.

After the announcement of the award, she told journalist Emily Mullin:

I don’t think it needs to be completely off-limits. I was pretty pleased with the recent report that came out from the National Academies and the U.K. Royal Society that recommends a kind of a measured approach to developing the technology for use in the human germline. They’re encouraging research to understand how the technology works in embryos.

First, the technology will need to be proven safe. Secondly, any clinical use [to establish a pregnancy] would need to be restricted to cases of serious genetic disease where there are few or no other options to treat the disease. I think those are both pretty high bars. Those situations are pretty rare. I personally think there are more viable strategies today, like embryo screening and selection in an IVF (in vitro fertilization) clinic, rather than using genome editing.

Some experts seem more worried about the CRISPR. The French site Gènéthique sought a comment from Jean-Marie Le Méné, president of the Jérôme Lejeune Foundation. He foresees a deep cultural problem:

The easy way out is to say that the technique is neutral and that only its use can pose a moral problem. Jacques Ellul has shown on the contrary that the technique has its own logic, powerful and autonomous, which is that of efficiency. It is therefore wrong to claim that technology is only a means. The end it serves imposes its morality. What serves efficiency is good, what serves it bad. Assigning the CRISPR tool the demiurgic purpose of "rewriting the code of life" is in line with the logic of efficiency which is the insane moral of the technique ".

And Monica Lopez Barahona, of the Madrid Center for Bioscience Studies, emphasized human dignity:

“The limit of the use of the CRISPR technique cannot be the imagination, but rather the dignity of the human being. This is why genome editing may be fair when used in somatic cells, but is not acceptable if used on gametes or embryos. We must take into account the consequences of this technique depending on where it is applied”.

Michael Cook is editor of BioEdge



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October
14
 

More family secrets unveiled in Netherlands

Another success for family reunions through genetic databases! A woman looking for her sperm donor father on the internet has discovered that he was a deceased gynaecologist who had fathered at least 16 other children. His patients believed that they were receiving fresh sperm from an anonymous donor.

The doctor, Jan Wildschut, worked from 1981 to 1993 at the fertility clinic of the former Sophia hospital, today called Isala hospital, in the eastern Dutch city of Zwolle. He died in 2009.

"A total of 17 donor children are currently known, in addition to the legal children of this former gynaecologist," Isala said in a statement. It does not know if he sired more children, despite an extensive search of its archives. It described Wildschut's actions as "morally unacceptable".

Wildschut was a pioneer in artificial insemination with donor sperm in the Netherlands. He once told a newspaper that there was great shortage of sperm donors, even amongst medical students.

The Dutch Health and Youth Inspectorate has declined to open a probe, as "this case took place at a time when there were no laws or regulations governing fertility treatments," the hospital said.

Last year, it came to light that a doctor in Rotterdam had fathered at least 49 children by using his own sperm for patients who wanted to have a child. 

Together with the doctor's legal family and his donor children, Isala decided to make the news public as a way of fostering great transparency in the issue of sperm donation. It gave two reasons on its website:

Every child has the right to know who their biological parents are, but some parents of children of donor insemination are afraid to tell their children that they are a donor child. Donors are reluctant to identify themselves with their donor children. There is a fear of openness among all parties involved when it comes to donor insemination, perhaps partly maintained because the subject is often exposed in a negative way. Especially when it concerns a case where the doctor himself turns out to be the donor. With this story, the legitimate children, the donor children and Isala want to contribute to more openness about the subject of 'donor conception'.

The risk of birth defects in children from relationships of half-siblings who do not know each other that they have the same biological father. Parents who have not informed their children about their origins could still tell their children that they are a donor child.

Michael Cook is editor of BioEdge



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October
14
 

Netherlands prepares for child euthanasia

It hardly comes as a surprise, but doctors in The Netherlands may soon be able to euthanise children under 12. They are already authorised to euthanise babies up to 12 months old and children over 12.

Health Minister Hugo de Jonge told the Dutch Parliament earlier this week that this should be possible for "a small group of terminally ill children who agonize with no hope, and unbearable suffering." He estimates that this will be applicable to five or ten children a year.

Dr de Jonge suggested that in rare cases where doctors felt that it was necessary to end the lives of children outside the law, they were being given “terminal sedation” which effectively means, as bioethics writer Wesley J. Smith commented, “put in an artificial coma and dehydrated to death”. But doctors are shielded from prosecution if they can show that there was no other alternative, a doctrine known as “force majeure”.

However, doctors have complained that this "grey area" between normal palliative care and active life termination is unsatisfactory. They need to have legal certainty.

The ministry is still working with the Public Prosecution Service and professional medical organizations to make the policy clear. 

The current proposal for legislation is supported by a report from three Dutch teaching hospitals published last year. It claimed that 84 percent of Dutch paediatricians wanted active life termination for children between 1 and 12 years old.

Critics have observed that euthanasia for children differs from euthanasia for adults because, with their meagre life experience, they cannot give truly informed consent. They fear that this will lead to involuntary euthanasia of adults. "The fact that we only kill people who ask for it is a cornerstone of our euthanasia system." Theo Boer, a Dutch ethicist.

Michael Cook is editor of BioEdge



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October
04
 

After months of Covid-19 scepticism, President Trump is hospitalized with the virus

President Trump on his way to Walter Reed Hospital 

One day before testing positive for Covid-19, President Trump told a New York charity event that: "The end of the pandemic is in sight and next year will be one of the greatest years in the history of our country."

While, touch wood, both of these forecasts may come true, the fact that Mr Trump is in the presidential suite of Walter Reed National Military Medical Center for at least a few days casts a shadow over them.

White House sources say that Mr Trump only has a mild fever. While he seems vigorous, he is 74 and weighs 244 pounds. He is in a high-risk category for a more severe case of Covid-19.

According to information on the website of the Centers for Disease Control and Prevention, compared with people in the 18 to 29-year-old bracket, patients in their early to mid-70s are five times more likely to be hospitalized, and 90 times more likely to die.

Part of his treatment is an intravenous dose of Regeneron Pharmaceuticals' dual antibody, REGN-COV2, one of a number of experimental Covid-19 treatments known as monoclonal antibodies.

Mr Trump is receiving the drug under "compassionate use" provisions, because it still is in an experimental stage.

As well, the President’s physician says that he is taking “zinc, vitamin D, famotidine, melatonin and a daily aspirin.” Science magazine pointed out that it is unclear whether he was taking these before he was diagnosed with coronavirus. “Notably, the statement does not indicate if Trump was or is taking hydroxychloroquine, the antimalarial he controversially pushed as a COVID-19 treatment,” Science noted.

The use of an experimental drug has provoked some comment. It appears that the President’s doctors "must be sufficiently concerned with what they are seeing that they decided to use an experimental medicine,” said Edward Jones-Lopez, an infectious disease specialist at the University of Southern California in Los Angeles. “Experimental drugs are by definition risky."

Not a good idea, Dr Jeremy Faust, of Brigham and Women's Hospital in Boston, told CNN. "We do a risk and benefit analysis of everything and if I can't tell my patient what the benefit is, there's no conversation to be had. This is not ready for prime time and, quite frankly, it sends a message that they're scrambling," Faust said.

He worried that other patients will request the same drug. "I can't look them in the eye and tell them that I know anything about it, in terms of its risks and benefits. That's a pretty bad precedent," Faust said.

Like everything surrounding President Trump, infection with Covid-19 is intensely political, both nationally and internationally.

Frank Bruni, a New York Times columnist, said that he was not surprised. “The presidency and the president are always national mirrors, in many different ways at once ... Trump has shown America its resentments. He has modeled its rage. Now he personifies its recklessness.” Which is more or less what the state media in China said, too. "President Trump and the First Lady have paid the price for his gamble to play down [the] COVID-19," tweeted the editor of the Global Times. "The news shows the severity of the US pandemic situation". 

Michael Cook is editor of BioEdge  



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October
04
 

Assisted dying round-up

Assisted suicide is on the legislative agenda in a number of jurisdictions. Here is the latest news on a few of them.

New Zealand. Kiwis will vote in a referendum on voluntary euthanasia on October 17. Parliament backed legislation earlier in the year, but the final decision rests with the public. Whether the next government is led by Jacinda Arderns’s Labour Party or the Nationals, the referendum will be binding. In the event of a "yes" vote, the End of Life Choice Act will come into force in October 2021.

Massachusetts. Assisted suicide is legal in nine US states and the District of Columbia. Some political observers believe that the Bay State could become the tenth. The state legislature’s Committee on Public Health has approved an End-of-Life Options Act, a bill which was first introduced in 2011 modelled on Oregon’s law. However, it appears that the bill's tacticians believe that it should not be brought to the whole legislature during the coronavirus pandemic. “If we don’t get it done this year we have a good shot, a better shot, to getting it done next year. It is not a negative indicator that a bill doesn’t get done in a particular session,” Senator William N. Brownsberger, a co-sponsor of the bill, told The Independent.

Portugal. Earlier this year the Portuguese parliament passed measures which would permit euthanasia and assisted suicide. However, they have been held up by an appeal for a referendum on the issue. The details of the referendum will be worked out in Parliament early in October.

Austria. Four people have applied to the Austrian Constitutional Court questioning the constitutionality of a ban on euthanasia and assisted suicide in the country’s penal code. The court should hand down a decision before the end of the year.

Ireland. A controversial private member’s bill which would legalise assisted suicide will probably be delayed until next year to allow an Oireachtas (parliamentary) committee to study the issue. At the moment, the Oireachtas is in the middle of a debate which will be resumed on October 7.

Tasmania. The parliament of the Australian state of Tasmania is still debating the merits of assisted dying. Sponsored by upper house member Mike Gaffney, an independent, this bill is the fourth in ten years. Previous bills failed in 2010, 2013 and 2017.

Michael Cook is editor of BioEdge



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October
04
 

BBC airs Harold Shipman doco

A mugshot of Dr Harold Shipman 

There is assisted dying and there is assisted dying. The former is in the headlines nowadays and is also known as assisted suicide. The latter is clearly murder. The best example of this is Dr Harold Shipman, the British family doctor who may have given lethal injections to more than 270 of his elderly patients in the 1970s, 80s and 90s. He was convicted of 15 of these deaths in 2000 and sentenced to life imprisonment. He committed suicide in 2004 in jail. 

Shipman is Britain’s most prolific serial killer and a perennial reminder of the inherent vulnerability in the doctor-patient relationship. 

Twenty years after his trial, the BBC will be airing a three-part documentary, The Harold Shipman Files: A Very British Crime Story, this month. "It's a chilling story about power, authority and an astonishing betrayal of trust," says filmmaker Chris Wilson.

The documentary series features interviews with friends and relatives of Shipman's victims. Police detected a pattern of administering lethal doses of diamorphine, signing death certificates, and then falsifying medical records to indicate that his patients had been in poor health.

Michael Cook is editor of BioEdge



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October
04
 

Dwarfism drug criticized

A drug to improve the quality of life of children with achondroplasia, the most common form of dwarfism, is coming under fire for reinforcing stigma. 

Early last month, Australian researchers published an article in The Lancet claiming that an experimental drug, vosoritide, appears to return growth rates to normal.

Professor Ravi Savarirayan, of Murdoch Children's Research Institute, in Melbourne, says that: "This drug is like releasing the handbrake on a car, it lets you get up to full speed instead of having to drive with the brakes on."

Achondroplasia is a genetic bone disorder affecting 250,000 people worldwide, or about one in every 25,000 children. It is caused by a mutation in the FGFR3 gene that impairs bone growth and means that children grow around 4 cm per year, instead of the usual 6 to 7 cm.

Current achondroplasia treatments, like surgery, only address the symptoms. Vosoritide is a precision therapy directly targeted at the molecular cause of the disease. But, according to a feature in The Guardian, some people with dwarfism question whether it is ethical.

Leah Smith, a spokeswoman for Little People of America (LPA), the largest organisation in the US for people with dwarfism, said [in 2015]: “People like me are endangered and now they want to make me extinct.” Recently, the actor Mark Povinelli, who is president of the LPA, told the New York Times that the drug “is one of the most divisive things that we’ve come across in our 63-year existence”.

There are, says Gillian Martin, a tutor and chair of the Restricted Growth Association, the British charity that supports people with dwarfism, “people who are genuinely afraid of where this could lead”. Because about 80% of children with achondroplasia are born to parents without it, some “adults with dwarfism in the community feel that average-height parents are being an advocate for a disability that doesn’t directly affect them. There is a fear – irrational in my view – that this research is leading the way to eradicate dwarfism.”

One issue is that parents have to consent to the treatment because the drug only works on children.

Michael Cook is editor of BioEdge



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October
04
 

Are open letters by scientists worth the paper they’re written on?

In late September a number of scientists wrote an open letter to the chief medical officers in the UK urging them to stay the course in suppressing the coronavirus across the whole population and not to rely upon herd immunity. A few days later this was followed by an open letter to Prime Minister Boris Johnson from a different group of scientists urging him not to impose a second lockdown.

Enough already! with these Covid-19 open letters, writes renowned Stanford epidemiologist John P.A. Ioannidis in a BMJ blog. “Debating ethical and social issues is the right of every citizen, including scientists,” he writes. “A collateral damage, however, is when these documents are aimed to prove or disprove scientific positions.”

Scientific positions are debated on social media, where they are distorted and misrepresented:

most importantly, petitions cannot and should not be used as a means to prove that the positions of the signatories are scientifically correct. As it has been previously observed, this is a fallacy, an argumentum ad populum, implying that the larger the number of scientists who sign, the more valid their scientific positions are. Vote counting is a faulty method of scientific inference. Science is replete [with] situations where vehement majorities have held wrong beliefs. 

He gives seven reasons why he believes that open letters are a bad idea and concludes: “Scientific truth is not an issue of zealotry and is not decided by the bulk of signatories.”

Michael Cook is editor of BioEdge



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October
04
 

The UK’s leading abortion service will create life as well as end it

The British Pregnancy Advisory Service (BPAS) is Britain’s leading provider of abortion services. Its website boldly declares that “We are the leading specialists of abortion advice and treatment in the UK, taking care of almost 80,000 women each year in over 70 reproductive healthcare clinics nationwide.”

Ann Furedi, the BPAS CEO, describes abortion as a worthy choice in a video on the organisation's website: “People talk about it as the lesser of two evils, and I think it’s important to recognise that what we do is actually a good thing; it’s good.”

So a recent announcement that BPAS will open a clinic in London to provide fertility services seems paradoxical. A charity almost completely devoted to ending the lives of unborn children will now take on the job of creating lives.

Ms Furedi is aware of the apparent contradiction. “So how can a charity, known internationally for its advocacy and provision of abortion services, argue for, and offer, IVF?” she asks rhetorically in an essay in BioNews. “And how will patients feel about accessing IVF care from an organisation that also provides abortions?”

Ms Furedi knows within herself that the two are not incompatible. She managed to run an abortion service while striving to fall pregnant. “To feel the fluttering, and later squirming and twisting of fetal movement can be a woman's greatest joy or most dreadful nightmare. Everything is contingent, everything depends on context, and everything is personal.”

As the CEO at BPAS, I know that there are not two worlds of women – women who want to have babies (who need access to fertility services) and women who don't (who need abortion). There is one world of women who all need different things at different times. Biology plays a cruel game with us – we are at our most fertile when we are least inclined to start a family and our fertility drops when we are still more than able to raise children. As an organisation, our core value is choice: the self-determination to decide if, when and with whom to have a child. We have helped women to exercise that choice to end pregnancy, now we will help women to achieve pregnancy.

Michael Cook is editor of BioEdge



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October
04
 

Remember how urgent it was to support embryonic stem cell research? That was then; this is now

The hot button bioethical issue of 2004 was embryonic stem cell research. Supporters spoke of life-saving cures and dismissed ethical misgivings. Surfing a wave of hope, Californian voters voted for a US$3 billion bond issue to establish the California Institute for Regenerative Medicine.

Sixteen years later, the CIRM has almost run out of money and its backers are rattling the tin in the hope that voters will approve a $5.5 billion bond issue to support its research.

Some of the state’s major newspapers have editorialised against it. With many of its critics, they contend that the CIRM has not delivered on its miracle cures, that its governance has been poor and that there was too much potential for conflict of interest.

The Los Angeles Times decried the earlier over-sell:

“[The CIRM] hasn’t yet yielded a significant financial return on investment for the state — or the cures that were ballyhooed at the time. Though no one ever promised quick medical miracles, campaign ads strongly implied they were around the corner if only the funding came through. Proponents oversold the initiatives and voters can’t be blamed if they view this new proposal with skepticism.”

The San Francisco Chronicle, which exposed some of the CIRM’s deficiencies in a 2018 exposé, criticised the way its funds had been spent:

“More than half the original funding went to buildings and other infrastructure, education and training, and the sort of basic research that, while scientifically valuable, is a long way from medical application. There’s nothing inherently wrong with that, but it is at odds with the vision of dramatic advancements put to voters."

Michael Cook is editor of BioEdge



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October
04
 

Jeremy Bentham and social distancing

Since utilitarianism is a frequent topic on BioEdge, readers will no doubt be interested in what its founder, Jeremy Bentham, has to say about the Covid-19 pandemic. Not too much, actually, since he passed away in 1832.

But at the moment what remains of him is promoting social distancing at University College London where his body has been preserved as an auto-icon at the entrance to the UCL student centre. The head is a wax effigy (the real head, now mummified, is stored elsewhere).

Pranksters recently fitted it with a mask and posted a photo on Twitter. This provoked a range of responses, most of them complaining that it was disrespectful to ridicule human remains: 

  • This is stupid and disrespectful.
  • I believe being dead is grounds for a mask exemption. He is most unlikely to be emitting any aerosols and his all-encapsulating display case serves in lieu of a visor. Also, notwithstanding the bizarre nature of his exhibition as an auto-icon, I think this is a tad disrespectful.
  • Social distancing like a pro - the greatest good for the greatest number.

However, it was Bentham’s wish that his body be put on display. The auto-icon was created in accordance with his last will and testament, which specifies that it should be exhibited in “an appropriate box or case”. It seems that he wanted to participate in UCL activities, which nowadays include mask-wearing:

“If it should so happen that my personal friends and other disciples should be disposed to meet together on some day or days of the year for the purpose of commemorating the founder of the greatest happiness system of morals and legislation my executor will from time to time cause to be conveyed to the room in which they meet the said box or case with the contents therein to be stationed in such part of the room as to the assembled company shall seem meet.”

Michael Cook is editor of BioEdge



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September
27
 

Trump nominates a pro-life woman to the US Supreme Court 

At the Supreme Court after the announcement of the nomination of Amy Coney Barrett / flickr / Victoria Pickering 

As expected, President Trump has nominated Judge Amy Coney Barrett to fill the vacancy on the US Supreme Court left by the recent death of Ruth Bader Ginsburg. Her nomination is unusual in many ways.

If Judge Barrett is confirmed by the Senate as the ninth Supreme Court Justice, she would be one of the youngest ever to serve – and more importantly, she can be expected to be on the court for decades, as American justices serve for life. A mother of seven, including two adopted children and one with Down syndrome, she would be the first to join the bench with school-aged children.

Trump’s selection is deeply political. A core promise to his supporters is filling the bench with conservative judges who will, amongst other things, overturn the 1973 ruling of Roe v Wade. No justice has ever been nominated so close to a presidential election and Democrats and some Republicans feel that appointing Ginsburg’s replacement should be the prerogative of the winner of November’s election. But keeping his promise might give Trump another four years in the White House.

Few pundits question the quality of Judge Barrett’s intellect. But she would be a judicial conservative replacing an outspoken liberal. Although no one can predict how justices will vote after their nomination, she describes herself as a disciple of the late Justice Antonin Scalia, for whom she worked as a clerk. “His judicial philosophy is mine, too. A judge must apply the law as written. Judges are not policymakers, and they must be resolute in setting aside any policy views they might hold.”

Although the Supreme Court rules on an almost infinite variety of cases, from fishing rights to voting rights, one issue overshadows all the others at the moment – whether Judge Barrett will vote to overturn Roe v Wade.

Judge Barrett has been described everywhere as “a devout Catholic” with pro-life views. However, her vote would not necessarily bring about a quick reversal of Roe v Wade.

In 2013, Barrett said, "I think it is very unlikely at this point that the court is going to overturn Roe, or Roe [v. as curbed by [Planned Parenthood v.] Casey. The fundamental element, that the woman has a right to choose abortion, will probably stand." It may depend on how closely she and fellow conservatives on the court will hew to the doctrine of stare decisis, of deciding cases on precedent.

The path to overturning Roe v Wade, if there is one, will involve constitutional issues which seem abstruse to the layman. In fact, Justice Ginsburg, a strong supporter of “a woman’s right to choose” was not impressed by the jurisprudence of Roe v. Wade, according to legal scholars, which was based on the implied right to privacy. She believed that a firmer basis was a right to gender equality.

Michael Cook is editor of BioEdge



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September
27
 

What about the super-sperm-spreaders?

Visitors to the Genghis Khan Monument at Zonjin Boldog, Mongolia.

A controversial genetic study published in 2003 suggested that one in every 200 men alive today is a descendant of Mongol conqueror Genghis Khan. In central Asia, this figure rises to about 8% -- or about 16 million men.

Impossible today? Not so fast. There were superspreaders, to borrow from the jargon of Covid-19 news, who spread their genes far and wide in the 60s, 70s and 80s of the last century – but they’re called doctors, not warlords. Is there any research into the consequences of this phenomenon?

The latest two cases to come to the attention of BioEdge come from South Africa and the United States.

Fiona Darroch writes in The Guardian about her discovery at the age of 52 that her biological father was really a South African fertility doctor named Tony Walker. It appears that “he had assisted more than 100 families in this way, many with multiple children”.

“We believe, based on what we could find out from the clinic staff, that he used his own sperm for at least 100 families, some with multiple, so we’ve probably got between 200 to 300 siblings from what we can calculate,” Ms Darroch told SBS. Her siblings are scattered across the globe, in the United States, Ireland, New Zealand, South Africa, Australia and the UK.

Dr Walker committed suicide in 1977 at the age of 62, so he cannot offer shed more light on this issue.

And in small city in central western Oregon, another doctor has discovered that he is father to at least 19 children. When Dr Bryce Cleary opened an account with Ancestry.com, he learned that a number of people had identified him as their biological father. He had donated sperm when he was a medical student in the 1980s. According to the Washington Post, many of his children “lived within two hours of his home, and that he may never really know how many donor children exist”.

These are not isolated cases.

Last year Dr Norman Barwin was formally deregistered in Canada for inseminating his patients with his own sperm or the sperm of unknown men. He was a recipient of the Order of Canada and several honorary doctorates, and a former president of Canadians for Choice, the Canadian Fertility Society, Planned Parenthood Federation of Canada and Planned Parenthood Ottawa. It appears that between 50 and 100 children were conceived after their mothers received the wrong semen. Of these 11 have been genetically matched to Barwin through DNA testing.

Dr Donald Cline, of Indianapolis, impregnated at least three dozen women in the 1970s and 1980s. More than 60 people claim he is their biological father.

A Dutch doctor, Dr. Jan Karbaat, is believed to have fathered 56 children for women who visited his clinic in Rotterdam between 1980 and 2009.

Then there was Dr Bertold Wiesner, who operated on a scale to rival Genghis Khan. It is believed that he sired 600 children for women who visited his London clinic in the 40s, 50s and 60s.

Dov Fox, a bioethicist at the University of San Diego and the author of Birth Rights and Wrongs, summed up the bizarre trend in a single word: “gross”. “In a couple more: shocking, shameful. The number of doctors sounds less like a few bad apples and more like a generalized practice of deception, largely hidden until recently by a mix of low-tech and high stigma.”

Michael Cook is editor of BioEdge



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September
27
 

Australian population growth slowed by pandemic

Bondi Beach in Sydney 

The Covid-19 pandemic has dealt a blow to Australian population growth which will take decades to recover, demographers believe. According to the Sydney Morning Herald, net overseas migration – which accounts for about 60% of the country’s population growth --  is set to collapse from 154,000 in last financial year to just 31,000 in 2020-21.

But natural population increase – births minus deaths – is also slowing. Figures issued by the Bureau of Statistics this week indicate that in March Australia had its smallest natural increase in 14 years.

New forecasts suggest that the fertility rate will drop to an all-time low of 1.59 during this financial year, recover in 2024 but then continue to drop to a little over 1.6 by the end of the decade.

"The COVID outbreak is going to cause a ripple that will be felt for years," says demographer Liz Allen, of Australian National University. "We're in deep strife. Children are indeed our future. They're our future taxpayers. Policies already favour older Australians. Lower fertility [and reduced migration] means as a community we're going to get older and that will just mean more policy support for older people at the expense of younger people.”

Michael Cook is editor of BioEdge



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September
27
 

Does Covid-19 spell the death of autonomy?

One casualty of the Covid-19 pandemic could be the bioethical principle of autonomy, argues Craig Klugman, of DePaul University, in a provocative blog post at the American Journal of Bioethics. Here are a few excerpts.

* * * * * * *

In the case of a response to COVID-19, perhaps our national and personal dysfunction might, in part, be the fault of bioethics’ legendary odyssey to move medicine from paternalism to autonomy. Part of the failure of this country to respond to COVID-19 as well as other nations have can be seen in the lack of a coordinated national response geared toward the common good. It can also be seen in individuals who reject actions that protect their communities: Refusals to wear masks, partying in large crowds, attending huge indoor rallies, going to school or work even when having COVID-19 symptoms are evidence of this view. Under individualism, one has no responsibilities or obligations for the common good because everyone is self-made  (thus stories of being self-made people even when your career starts with over $400 million from a parent). There is no sense of “we are all in this together” or “it takes a village.” Ideal autonomy rests on this image as well, that we are islands unto ourselves and should make rational choices free of outside influences (including effects on family; or taking their needs into account). We regularly teach autonomy as meaning the patient as an individual alone should make the choice….

Is bioethics at least partly at fault? Have we pushed this idea of autonomy and individualism in medicine and other life sciences to the point where a communal and coordinated federal response is “un-American”? Bioethics has been an acolyte of the church of individualism, spreading its gospel around the world.

Bioethics has pushed too far in the direction of the individual and needs to have a turn toward the importance of the community and the common good.

Michael Cook is editor of BioEdge



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September
27
 

‘The Economist’ backs DIY abortions

The Economist, perhaps the world’s most influential magazine, has come out strongly in support of DIY abortions. In a recent leader (editorial) it observed that access to abortion clinics during the Covid-19 pandemic has been difficult in many countries. To make it easier for women, a number of countries have relaxed restrictions on mail-order drugs which make it easy for women to have abortions without ever consulting a doctor face-to-face. 

Covid-19 has changed that. In March Britain’s health secretary approved a rule change which, in effect, gave a woman’s home the same status as an abortion clinic. Instead of visiting a doctor, women could arrange an abortion by phone and have the pills delivered by post. Ireland introduced similar rules. France extended the limit for an at-home abortion from the seventh to the ninth week of pregnancy, though the pills must still be collected from a doctor or pharmacy. In July a federal judge in America lifted regulations that required women to collect abortion pills from a surgery, clinic or hospital, ruling that this was a “substantial obstacle in the path of women” during a pandemic.

This is a welcome development, says The Economist. “The changes to the abortion regime introduced as a result of the pandemic do not create new rights; they give a woman access to her existing rights more safely and efficiently. As with any citizen, that is welcome.”

Critics of DIY abortions contend that they are dangerous, although The Economist insists that “There is no evidence that at-home terminations are dangerous, and plenty to suggest that they are not”.

However, there is evidence that two women have died recently in the UK after taking abortion pills. In a leaked email written on May 21 which was tabled in court, a midwife for the National Health Service wrote that 13 incidents were being investigated, including a possible murder of a baby aborted alive, two maternal deaths, and abortion pills being delivered to a woman 22 weeks over the legal limit for home abortion. The email also said:

‘In [our region] we are aware that there have been 2 maternal deaths linked to this issue also. One case where a woman was found at home the morning after starting the process and the second where a woman presented with sepsis and died very quickly in the A&E dept. Neither of these women were known to our maternity or gynae services as far as we are aware.’

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
27
 

Covid-19 response ignores patients with rare diseases

Another overlooked population in the Covid-19 pandemic is patients with rare diseases. In a BMJ blog two scientists, from the US and the UK, complain that many “patients with a rare disease [are] facing potentially serious health inequalities during the pandemic, in addition to the insufficient provision and care inadequacies they were already facing before covid-19”.

They point out that “75% of those affected by rare diseases are children who are medically fragile and suffer from complex medical challenges. Rare diseases are predominantly chronic in nature, arise from genetic causes, and are often life-threatening. Despite the fact that there are more than 7000 rare diseases affecting around 350 million people worldwide, and in the UK there are approximately 3 million people affected by rare illness, this population has not yet received the attention from society and the medical community that it requires, or deserves.”

During the pandemic, many patients felt isolated and in the dark, unsure about whether and how they should isolate.

They conclude: “To emerge from the covid-19 pandemic as a stronger society than we were before it, we urgently need to unite rare disease organisations’ resources with mainstream medical care so that we do not leave our most vulnerable patients behind.”

Michael Cook is editor of BioEdge



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September
27
 

Once again, the Vatican slams euthanasia

If anyone were unsure of where the Catholic Church stood on assisted suicide and euthanasia, they can have no doubts now. In a lengthy document titled Samaritanus Bonus (“the good Samaritan”), the Vatican has released a lengthy response to the spread of “assisted dying”.

Assisted suicide or euthanasia or both are permitted in the Netherlands, Belgium, Luxembourg, Canada, Colombia, Switzerland, eight states in the United States plus the District of Columbia, and two states in Australia. A number of other countries are considering legalisation.

The document is clear and emphatic: euthanasia is “an intrinsically evil act, in every situation or circumstance”.

As well, anyone who cooperates is guilty as well, even those who defend legalisation. 

“Euthanasia is an act of homicide that no end can justify and that does not tolerate any form of complicity or active or passive collaboration. Those who approve laws of euthanasia and assisted suicide, therefore, become accomplices of a grave sin that others will execute. They are also guilty of scandal because by such laws they contribute to the distortion of conscience, even among the faithful.”

The Church’s opposition is hardly news. More than 50 years ago the Second Vatican Council condemned euthanasia. Long before the Netherlands legalised it in 2002, Pope John Paul II forbade it in an encyclical, Evangelium Vitae (“the Gospel of Life”). However, the disagreeable reality of legalisation presents problems for Catholics – and other Christians who oppose it in theory. Should people who request assisted suicide or euthanasia receive the Church’s last rites? Should they be given a Christian funeral?

Some bishops appeared to lean toward a policy of demonstrating compassion by “accompanying” a person who chooses to die in this way.

Samaritanus Bonus puts the kibosh on this. People who request assisted suicide or euthanasia may not receive the Church’s sacraments. Even membership in an association organising “assisted dying” is forbidden. They “must manifest the intention of cancelling such a registration before receiving the sacraments”.

Whilst this sounds harsh, the document acknowledges that in extremis people may be so distressed that they are not fully responsible for choosing this kind of death. It urges priests to look for “adequate signs of conversion”. But in principle, there should be no cooperation whatsoever:

Those who spiritually assist these persons should avoid any gesture, such as remaining until the euthanasia is performed, that could be interpreted as approval of this action. Such a presence could imply complicity in this act. This principle applies in a particular way, but is not limited to, chaplains in the healthcare systems where euthanasia is practiced, for they must not give scandal by behaving in a manner that makes them complicit in the termination of human life.

Familiar stuff, perhaps, for friends and foes of Catholicism.

What’s different about this document is that it also offers a perceptive bioethical analysis of euthanasia, along with theological prescriptions.

The principal justification for euthanasia is autonomy. It’s my life; I can do what I want with it. Nobody can tell me what to do. We have to respect a patient’s autonomous decision. Choosing the time and place of death is the ultimate affirmation of autonomy, etc. The arguments are nearly always drawn straight from the playbook of the 19th century British philosopher John Stuart Mill.

The philosophy underlying the secular arguments deployed in Samaritanus Bonus is completely different. Instead of departing from the autonomy of the patient, it emphasises the universal experience of vulnerability.

For the fully autonomous man, think of lron Man in the Marvel Universe. Zipping around in his suit of armour, he is invulnerable. But what makes him interesting is the fact that Tony Stark is vulnerable. He suffers from PTSD, narcissism and loneliness. It’s not the strength of Iron Man’s armour that makes him human, but the fragility of Tony Stark’s character.

Which is more or less what the Vatican says:

The need for medical care is born in the vulnerability of the human condition in its finitude and limitations. Each person’s vulnerability is encoded in our nature as a unity of body and soul: we are materially and temporally finite, and yet we have a longing for the infinite and a destiny that is eternal. As creatures who are by nature finite, yet nonetheless destined for eternity, we depend on material goods and on the mutual support of other persons, and also on our original, deep connection with God.

Given this vision of what a human being is, the appropriate response to illness is not to kill a patient, but to care for him.

Our vulnerability forms the basis for an ethics of care, especially in the medical field, which is expressed in concern, dedication, shared participation and responsibility towards the women and men entrusted to us for material and spiritual assistance in their hour of need.

Furthermore, the document points out that measuring a patient’s dignity by his autonomy leads to the contradiction which has always bedevilled Mill’s theory. How can the highest expression of autonomy be to extinguish it? If that were true, couldn’t we choose to sell ourselves into slavery to settle our debts? No. “Just as we cannot make another person our slave, even if they ask to be, so we cannot directly choose to take the life of another, even if they request it,” it points out.

Therefore, to end the life of a sick person who requests euthanasia is by no means to acknowledge and respect their autonomy, but on the contrary to disavow the value of both their freedom, now under the sway of suffering and illness, and of their life by excluding any further possibility of human relationship, of sensing the meaning of their existence, or of growth in the theologal life. Moreover, it is to take the place of God in deciding the moment of death.

The document also makes some very shrewd observations about the implications of pretending that we are Iron Man instead of acknowledging ruefully that underneath we are really Tony Stark.

In fact, if autonomy is the highest value, people whose autonomy is impaired are in trouble.

Those who find themselves in a state of dependence and unable to realize a perfect autonomy and reciprocity, come to be cared for as a favor to them. The concept of the good is thus reduced to a social accord: each one receives the treatment and assistance that autonomy or social and economic utility make possible or expedient. As a result, interpersonal relationships are impoverished, becoming fragile in the absence of supernatural charity, and of that human solidarity and social support necessary to face the most difficult moments and decisions of life.”

In short, the proper response to Tony Stark’s end-of-life existential crisis is not to end his life, but to lavish care upon him, to treat him as unique and precious (which is what happens in Avengers: Endgame).

Michael Cook is editor of BioEdge



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September
19
 

The US should brace itself for a “national wave of fertility fraud”

A new field of litigation has evolved in the United State: denouncing fertility fraud. In the latest episode, a nation-wide firm, Peiffer Wolf Carr Kane & Conway, announced that it was pursuing two fertility doctors who allegedly used their own sperm a generation ago to get women pregnant and without informing them.

This is just the tip of the iceberg, according to Adam Wolf, the lawyer handling the cases. He claims that hundreds of fertility fraud cases will emerge across the US as people begin to investigate their geneology using home DNA testing kits.

In the first case, a San Francisco woman discovered that both of her children were the offspring of her fertility doctor, Dr Michael S. Kiken. Furthermore, through Kiken, the children are carriers of Tay Sachs disease.

In the second case a San Diego woman sought the help of Dr Philip Milgram in 1988 for artificial insemination, which resulted in the birth of their son. Milgram told her that he had used the sperm of a healthy and anonymous sperm donor -- but he allegedly used his own instead.

Milgram later was stripped of his medical license in California for drug-related conduct. He faced accusations of practicing medicine while intoxicated, failing to maintain records, and a host of other offenses. He later regained his license and now practices “addiction medicine” in the San Diego area.

Wolf is lobbying for federal regulation of the fertility industry. He told the media: “The actions of these doctors are horrific. The gross misconduct committed by these doctors is a profoundly intimate betrayal … We have to decide as a nation that the Wild West days for the IVF/fertility industry are over.”

Katie Richards is the San Francisco-area mother in the case against Dr Kiken. She said: “Dr Kiken used his own sperm. It’s sickening. Now, I have to live knowing that he violated me, and that my children – whom I love dearly – are a result of his disgusting conduct. All of our memories, and all of the memories that we have yet to make are forever tainted.”

Her daughter, Julie Druyor, also expressed her dismay: “I used to look in the mirror and recognize who was looking back at me. Now, sometimes I look in the mirror and don’t even recognize myself. Sometimes, I see ‘him.’ Sometimes, I see the man who violated my mother’s trust and turned our worlds upside down. I’m a product of my mother’s abuser.”

Bev Willhelm, of San Diego, is the mother in the case against Dr Milgram, said: “Instead of using the sperm of an anonymous donor and a physically and mentally healthy individual, as he promised, Dr Milgram used the sperm of a drug addict who had serious mental health issues … his own sperm.”

Most of the individuals who are the offspring of fertility fraud will now be between 30 and 45 years old, reflecting the advent of inexpensive and widely available home DNA testing kits, such as Ancestry.com and 23andMe, which are often purchased as holiday presents. Wolf noted that families across America may be just a Christmas gift away from learning about a dark and unexpected part of their genetic past.

Michael Cook is editor of BioEdge



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September
19
 

“To boldly go where no man has gone before!” – forging space bioethics

Space colonisation is no longer just a dream of science fiction novelists. It is seriously being considered by governments and corporations. Space entrepreneur Elon Musk apparently believes that there will be a million people on Mars by the year 2050.

With all that activity the colonists will almost certainly be in need of a bioethicist. Polish philosopher Konrad Szocik is one candidate. In an article in the journal Bioethics, he outlines some of the issues that people will face in space. He says that “the new space bioethics should be a feminist new bioethics that is free from many of the historical biases associated with a male-centred perspective in philosophy and bioethics.”

What are some of the issues that space colonists will have to deal with?

The first thing to be noted is that “we should be open and ready for all kinds of ethical rules in a space colony—including those that go against our current moral intuitions.” It may be that space will be a new frontier ethically as well as technologically, giving the Star Trek motto, “To boldly go where no man has gone before!”, a new twist.

Human reproduction. On earth, the right to reproduce is fundamental. But in space, children might be genetically impaired or might strain the slender resources of a colony.

Sterilisation. This might have to be mandatory in space to prevent births.

Human enhancement. Assuming that it is possible, earth-bound scruples might have to be discarded if the survival of the human species were at risk.

Pre-birth screening. Should space settlers have the right to select embryos for intelligence or capacity to survive?

Szocik believes that feminist bioethics offers the best framework for space bioethics because it is more attentive to reproductive and environmental issues.

Michael Cook is editor of BioEdge



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September
19
 

Should India repeal its ban on sex selection?

Gendercide is the word used nowadays to describe the missing millions of girls because of a preference for sons in India. According to the Invisible Girl Project, a lobby group, “More girls and women have been discriminated against and killed in the past century than any other modern-day genocide”. On average, one girl is aborted in India every minute. About 500,000 a year are selectively aborted.

There are laws against the practice which target doctors who provide ultrasound sex diagnosis and abortions of girls. However, the 1994 law banning sex-selective abortion was ineffective. It was amended in 2002, but still very little progress has been made in ridding India of the practice.

So, if a ban doesn’t work, should it continue to exist? A Norwegian bioethicist argues in the journal Bioethics that it shouldn’t.

Aksel Braanen Sterri, of the University of Oslo, contends that “The ban makes the situation worse, especially for mothers and their daughters. India should therefore repeal its ban on sex selection.”

Sterri concedes that sex selection is harmful for society as well as for women and girls (although he says that “the harm an abortion does to the foetus itself is not morally relevant”). The murder rate is higher, violence against women is widespread, it is harder for men to find wives, women become victims of trafficking, and so on. But he argues that a ban may be worse than ineffective.

What alternatives do women have, when they cannot resort to legal sex selective abortion? This must be examined, Sterri says. They can get black market abortions, which are expensive and dangerous. They can continue having girls until they have a son. Or they can call it quits after a couple of girls. Under none of these options are women and girls better off, he says.

The ban has been in place since 1994, with few attitudinal changes to show for it. The main reason why the ban fails to change people's preferences and behavior is arguably that the unjust background conditions make it rational for parents to strongly favor sons over daughters …

Women use sex selection to make the best of their situation in an unjust society. The root cause of the problems is therefore the way the society is structured, and this is arguably the responsibility of society at large. In this context, it seems unreasonable to say that women who use sex selection forfeit their right not to be unreasonably burdened.

Perhaps the problem is something other than legal. Sterri does not tackle the massive challenge of changing Hindu culture.

Michael Cook is editor of BioEdge



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September
19
 

Whistle-blower claims that detainees in US facility were sterilised without consent

More than 170 members of Congress have called for an inquiry into allegations that women immigrants in an ICE detention centre in Georgia had unnecessary hysterectomies.

The charges were made by whistle-blower at the facility, run by the US Immigration and Customs Enforcement (ICE) Health Service Corps. Dawn Wooten, a nurse, claims that several women told her that a local doctor who works in the facility had removed their womb. “That’s his specialty, he’s the uterus collector,” said one woman.

These claims are vehemently denied by the doctor and have not been verified. However, they are a disturbing echo of abuses alleged to have taken place a few years ago in two California prisons.

Ms Wooten told activists at Project South that that detainees complained that they didn’t fully understand what the doctor was doing. She said: “I’ve had several inmates tell me that they’ve been to see the doctor and they’ve had hysterectomies and they don’t know why they went or why they’re going.”

She also said: “When I met all these women who had had surgeries, I thought this was like an experimental concentration camp. It was like they’re experimenting with our bodies.”

Dr Ada Rivera, of the ICE Health Services Corps, told the New York Times that the allegations would be investigated, but that the agency “vehemently disputes the implication that detainees are used for experimental medical procedures.”

A letter from members of Congress demanded an immediate investigation:

The reports of mass hysterectomies cause grave concern for the violation of the bodily autonomy and reproductive rights of detained people. Everyone, regardless of their immigration status, their language, or their incarceration deserves to control their own reproductive choices, and make informed choices about their bodies.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
19
 

Assisted dying activists sue to force UK doctors to change policy

British activists are threatening the Royal College of General Practitioners with legal action for continuing to oppose the legalisation of assisted dying.

Earlier in the year the RCGP surveyed its members about the highly contentious issue. Only about 13% of the RCGP’s 50,000 members responded. Of these, 47% said that the RCGP should oppose a change in the law on assisted dying; 40% supported a change; and 11% supported neutrality. (About 2% abstained.)

The RCGP’s Council agreed that the survey results did not support a change in the College's existing position on assisted dying. It also decided that it will not review its position for at least five years unless there were significant developments.

This position is “irrational”, according to its critics.

The trend is clear: support for opposition has fallen since 2013, the last time that members were consulted by the RCGP. And support for legalisation has risen sharply. Nonetheless, a plurality still favoured maintenance of the status quo.

Opponents have seized on the fact that the status quo did not have majority support. 

“The College is failing in its obligations to properly represent the views of its members,” say RCGP members Aneez Esmail and Sam Everington, the Good Law Project, and the pressure group Dignity in Dying.

In a solicitor’s letter they accuse the college of “a flawed and unlawful decision-making process” that was “irrational, failed to take into account relevant factors and took into account irrelevant factors.”

The letter says: “With such a polarised result on an important ethical issue there was a fundamental error in treating ‘neutrality’ as a stand-alone third option as opposed to representing the middle ground between two competing, but polar opposite, views with similar levels of support.

“The results in this case clearly supported change in the College’s position and so neutrality is arguably the only logical way of reflecting that change.”

With neither two side having a clear majority in some of the professional colleges, dissident doctors seem to be resorting to the courts. Last year, when the Royal College of Physicians adopted a position of “neutrality” even though a plurality opposed it, four doctors attempted to contest the administrators’ decision. However, the High Court refused to hear the case.

Michael Cook is editor of BioEdge



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September
19
 

Are you a burnt-out bioethicist? If so, you’ve got company

Many doctors have said that working in hospitals during a surge in Covid-19 cases is like working in a war zone. Bioethicists are not as close to the action, but they are still experiencing burnout, says Craig Klugman, a bioethicist at DePaul University. They have had to switch to all on-line teaching, live in isolation, watch a tragedy unfold across the world, and bear the burden of reflecting on Black Lives Matter protests.

What I outline here is the experience of one bioethics scholar located in a baccalaureate teaching institution. Physicians have experienced increased burnout (1 in 4 report lower well-being in the pandemic). Most in bioethics, though, work in medical centres and hospitals. Clinical bioethicists and clinician-bioethicists faced the increased workload of caring for patients that the pandemic wrought. They had had to create allocation plans for shortages of ventilators, ECMO, unilateral DNRs, PPE, medications, and staff. We have all been advising local, state, and federal government efforts. In many large cities, bioethicists have come together to coordinate, write, and respond across institutions. Many of us have been giving our time and expertise to reporters to help them accurately convey the complexities to the general population.

This could affect the whole profession, Klugman muses:

Are we about to be hit with a wave of Bioethics Burnout? Are you exhausted? Are you feeling mental distance from your work? Do you have difficulty focusing on work tasks? Do you have negative feelings about your work or seek more mental distance from your work than usual? Are you less effective professionally than usual? Are you unexcited about spending 12 hours a day in front of Zoom for virtual academic conferences? If so, you may suffer from bioethics burnout.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
19
 

5% of Australian babies come through IVF

About 5% of babies born in Australia are IVF babies, according to the latest report from the University of New South Wales, based on figures from 2018.

As well, a record one in 10 babies born to women aged 35 and older are now products of IVF and an increasing number of women using frozen embryos to screen out chromosomal abnormalities.

The proportion of twins and triplets born following IVF treatment is now 3.2% -- a record low in Australia and New Zealand’s 40-year IVF history. This is due to the increased proportion of IVF cycles where only a single embryo is transferred, up from 79% in 2014 to 91% in 2018.

“By comparison, the percentage of multiple births from IVF treatment was 8% in the UK and 13% in the US during the same period,” says Professor Georgina Chambers, the lead author of the report.

The president of the Fertility Society of Australia, Professor Luk Rombauts, claims, as doctors and politicians in other countries have, that IVF could help bolster Australia’s fertility rate. “IVF represents a significant number of babies, and importantly the majority of these babies were singletons, which is safer for mothers and babies,” he says. “It is estimated that in the last 40 years, more than eight million babies have been born through IVF globally, a significant contribution to the population.”

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

How should the vaccine be distributed? Ezekiel Emanuel has a plan

When effective Covid-19 vaccines are developed, they will be scarce for a while. The World Health Organization (WHO), global leaders, and vaccine producers are already facing the question of national and international allocation. And while there is vocal commitment to "fair and equitable" distribution, what exactly does "fair and equitable" look like?

Nineteen global health experts have proposed a new, three-phase plan for distributing a vaccine for Covid-19. Published this week in Science, the paper was led by Ezekiel J. Emanuel, of the University of Pennsylvania.

Two main proposals have emerged. Some argue that health care workers and high-risk populations, such as people over 65, should be immunized first. The WHO, on the other hand, suggests that countries receive doses proportional to their populations.

From an ethical perspective, both of these strategies are "seriously flawed," according to the article in Science

"The idea of distributing vaccines by population appears to be an equitable strategy," Emanuel said. "But the fact is that normally, we distribute things based on how severe there is suffering in a given place, and, in this case, we argue that the primary measure of suffering ought to be the number of premature deaths that a vaccine would prevent."

In their proposal, the authors analyse the situation from a principalist standpoint, which they call the Fair Priority Model. Its aim is to mitigate three types of harms: death and permanent organ damage, indirect health consequences, such as health care system strain and stress, as well as economic destruction.

Of all of these dimensions, preventing death -- especially premature death -- is particularly urgent, the authors argue, which is the focus of Phase 1 of the Fair Priority Model. Premature deaths from COVID-19 are determined in each country by calculating "standard expected years of life lost," a commonly-used global health metric. In Phase 2, the authors propose two metrics that capture overall economic improvement and the extent to which people would be spared from poverty. And in Phase 3, countries with higher transmission rates are initially prioritized, but all countries should eventually receive sufficient vaccines to halt transmission -- which is projected to require that 60 to 70% of the population be immune.

The WHO plan, by contrast, begins with 3 percent of each country's population receiving vaccines, and continues with population-proportional allocation until every country has vaccinated 20% of its citizens.

Emanuel and his coauthors argue that, while that plan may be politically tenable, it "mistakenly assumes that equality requires treating differently-situated countries identically, rather than equitably responding to their different needs." In reality, equally populous countries are facing dramatically different levels of death and economic devastation from the pandemic.

The authors also object to a plan that would prioritize countries according to the number of front-line health care workers, the proportion of the population over 65, and the number of people with comorbidities within each country. They say that preferentially immunizing health care workers -- who already have access to personal protective equipment (PPE) and other advanced infectious disease prevention methods -- likely would not substantially reduce harm in higher-income countries.

Similarly, focusing on vaccinating countries with older populations would not necessarily reduce the spread of the virus or minimize death. Moreover, low- and middle-income countries have fewer older residents and health care workers per capita than higher-income countries.

"What you end up doing is giving a lot of vaccine to rich countries, which doesn't seem like the goal of fair and equitable distribution," Emanuel said.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

21st century body-snatching is alive and well

Burke and Hare, Britain's most famous grave robbers 

A Colorado mother-daughter team have been indicted for misusing corpses sent to their funeral home for cremation. It is alleged that Megan Hess and Shirley Koch sold hundreds of corpses and body parts over a decade.

The pair opened the Sunset Mesa Funeral Home in 2009 and used it to launch a non-profit donor services business, Sunset Mesa Funeral Foundation. This business sold human remains to universities, scientists and the medical industry without the knowledge of families.

According to the federal district attorney:

In the few instances where families agreed to donation, Hess and Koch sold the remains of those decedents beyond what was authorized by the family, which was often limited to small tissue samples, tumors, or portions of skin. Hess and Koch also delivered cremains to families with the representation that the cremains were that of the deceased when, frequently, that was not the case.

Hess and Koch would also ship bodies and body parts that tested positive for, or belonging to people who had died from, infectious diseases, including Hepatitis B and C, and HIV, after certifying to buyers that the remains were disease free. These shipments would be through the mail or on commercial air flights in violation of Department of Transportation regulations regarding the transportation of hazardous materials.

“The defendants are charged with committing a blatant fraud on many, many victims. This betrays a fundamental trust during one of the worst times in a person’s life – having to make arrangements for a deceased loved one,” said U.S. Attorney Jason Dunn. “It is hard to imagine the pain and worry of those who used Sunset Mesa and not knowing what happened to their loved ones’ remains.”

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

Warring parents in landmark gender dysphoria case in Australia

In a landmark case about gender dysphoria and gender transition, a Family Court judge in Sydney has ruled that a 16-year-old boy should be allowed to transition to a girl over the objections of his mother.

The parents of “Imogen”, the pseudonym used by the Court for a boy named Thomas, are divorced and at loggerheads over the transition. His mother opposes it; his father, with whom he lives, supports him.

Imogen apparently has felt as though he was a girl from the age of 6 or 7. He wanted to begin oestrogen treatment, but this was blocked by a lawsuit by his mother. Now he can go ahead. "We got the result last night and we had a bit of a cry," Imogen's father told the Sydney Morning Herald.

According to the judgement, Australian law is clear: a competent 16-year-old who wants to transition is free to commence hormone treatment without intervention from the courts. Only if one of the parents objects about consent or treatment should the court step in.

In this case, Imogen’s mother alleged that he was not “Gillick competent”, the standard used to determine whether a child can make legally-binding decisions. She said that Imogen was unable to fully understand treatment with cross-sex hormones and had a misplaced confidence in the positive effects of transitioning. She suggested psychotherapy rather than medication for Imogen’s gender dysphoria.

But Justice Garry Watts declared that Imogen was competent to understand the gravity of the issues involved and could commence treatment.

The section “relevant background” in the judgement makes very troubling reading. The parents married in 2003, had two children, Imogen and Olivia, and separated in 2017. The marriage was characterised by bitter disputes and violence. Both spouses subsequently remarried. The father’s new partner, Ms R, “was doing research on Gender minorities and their access to medical treatment” – which may have influenced Imogen’s decision to transition.

Both children have been desperately unhappy for several years. Imogen was diagnosed with depression and Olivia began self-harming and behaving bizarrely at home and school. In 2018, a doctor noted that “Imogen presented with major depressive illness associated with anxiety and panic but with no suicidal ideation”. The judge noted that “Both Dr C and Dr D’Angelo agree that Imogen has widespread and complex co-existing mental health difficulties.

In 2019, Imogen had his sperm frozen and started purchasing a feminising hormone from overseas over the internet.

Whichever way you look at it, Imogen is a very troubled teenager. A sex change may do little to change that.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

Victory through exhaustion? Once again, Tasmania’s parliament will debate assisted suicide

Tasmanian rainforest 

This week the parliament of the Australian state of Tasmania will once again consider assisted dying. Sponsored by upper house member Mike Gaffney, an independent, this bill will be the fourth to be debated in ten years. Previous bills failed in 2010, 2013 and 2017.

There are powerful voices on both sides of the debate. A former Chief Justice of the Supreme Court and Governor, William Cox, and a legal academic, Jeremy Prichard, pointed out in an op-ed in The Mercury that from a criminal law perspective, a punishment of five-years in jail for coercing someone into assisted suicide “only addresses one aspect of deterrence: the consequences of detection. It does not address the other aspect of deterrence, the chances of detection.” The local branch of the Australian Medical Association is also opposed to the bill.

However, a number of prominent Tasmanians support it. The Council of the Aging believes the bill has adequate safeguards to prevent wrongful deaths. "It's not an immediate decision that someone can take, there are steps in the process to re-check whether this is the right thing for them," CEO Sue Leitch said.

What everyone has noticed about this legislation is its length. It is 122 pages long, compared to the 19-page bill introduced in 2009.

However, ethicist and palliative care doctor Megan Best says that: “Length is no indication of quality and whoever thinks it’s a stringent bill, hasn’t read it”.

She gives two reasons why: “This is a bill that allows for safe sanction suicide for people who are not terminally ill and it contains a clause that it should be reviewed in two years’ time after passing to see if it should be extended to include children … There are people saying that it’s such a dreadful bill it shouldn’t even be debated, and that it doesn’t deserve to be treated as a reasonable bill.”

Apparently the state’s premier, Peter Guttwein, shares some of these misgivings. A four-page letter to the bill’s sponsor was leaked this week to The Examiner. It raises concerns about its drafting and implementation.

"The introduction of voluntary assisted dying provision potentially poses significant risks to patients, in the context of their care, and to medical professionals, in the context of delivering services and therefore every effort needs to be made to confirm the bill contains provisions that protect patients and restrict professional liability," it said.

Mr Guttwein also questioned the cost of funding a Commissioner of Voluntary Assisted Dying and support staff to implement, administer and review the legislation.

"The implementation time-frame of up to one year under current circumstances is insufficient," it said. "Government departments have significant existing resources allocated to responding to COVID-19, which has an unpredictable future."

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

Anorexia patient should not be force-fed, says UK judge

A tragic case in the UK Court of Protection illustrates some of the ethical issues involved in refusing burdensome treatment.

AB is a 28-year-old woman who has struggled with anorexia nervosa since she was 13. She now weighs about 26 kilograms and is so weak that she could easily die of starvation or a cardiac arrest.

At this stage the only way to save her life is naso-gastric tube feeding. But AB finds this abhorrent. She would have to be restrained or sedated during the procedure to keep her from ripping the tube out. “The only purpose of such an option would be to re-nourish AB's body to the point where she is well enough to engage in psychiatric or psychological therapies,” observes Mrs Justice Roberts in her decision.

“Because of the physical and psychological trauma which would be inflicted on this young woman were she to be subjected to a further trial of nasogastric feeding, both [her parents] and she are in agreement that she should not receive any further active treatment for her anorexia nervosa,” she writes.

What the judge had to determine was whether AB had the mental capacity to refuse further medical treatment which could save her life. She declared that AB was mentally competent.

This flows from the fundamental principle that a person who has capacity is entitled to decide for himself or herself whether or not to accept or decline medical treatment. Even treatment which has the potential to save life is subject to that absolute principle and basic human right once a court is satisfied that the person concerned has the capacity to make the decision. This fundamental right to choose is not limited to situations and decisions which others might regard as sensible. It matters not that the reasons for making the choice are "rational, irrational, unknown or even non-existent"

So, concluded Mrs Justice Roberts, forced feeding was not in AB’s best interests.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

Belgium: the inescapable duties of paternity

Delphine Boël, out-of-wedlock daughter of King Albert II of Belgium, at a book-signing in 2008

This is the paternity suit of the century. After a DNA test confirmed that he was the father, the love child of Albert II, the former King of Belgium, is seeking the same rights as his three other children -- Philippe, now King of Belgium, Prince Laurent and Princess Astrid.

In January Albert acknowledged Delphine Boël as his daughter after he was forced to take a paternity test. For more than a decade he had been fighting a claim by the 51-year-old artist. His lawyers said the 85-year-old now accepted Delphine Boël as “his fourth child".  

Her lawyer told the BBC: 'Delphine's position isn't that she wants or doesn't want to be princess. She doesn't want to be a cut-price child, she wants to have exactly the same privileges, titles and capacities as her brothers and her sister.”

The legal tussle went on for years. After he abdicated in favour of his son Philippe in 2013 because of ill health, Albert lost royal immunity from prosecution.

Ms Boël's lawyer told local media at the time that "her life has been a long nightmare because of this quest for identity".

He added: "She had a biological father who brutally rejected her when this paternity [case] publicly emerged". He added that she launched the legal fight "to avoid her children carrying this weight".

Albert came to the throne unexpectedly in 1993 when his older brother King Baudouin died. He served as a constitutional monarch for 20 years.

Rumours surfaced in 1999 that his mistress from 1966 and 1984, Baroness Sybille de Selys Longchamps, had a daughter by him. He never denied it, but he always tried to evade the issue.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

“Stop having these stupid parties,” says gender-reveal originator

Oooops! The beginning of the San Bernadino fire 

Last year American blogger Jenna Karvunidis apologised for creating the “gender reveal” party craze. Guests assemble and celebrate noisily when the sex of the baby is revealed after an ultrasound. She regretted the gender stereotyping that these parties foster.

“Pink for a girl and blue for a boy? Why is this still happening in 2019, when some of us have realise how reductive and harmful this kind of gender stereotyping is?”

Just to remind readers that craze still hasn’t gone away, here’s the latest news from California. A young couple in the San Bernadino area invited friends to a gender reveal party. A "smoke-generating pyrotechnic device” was to be detonated gushing blue smoke for a boy or pink smoke for a girl.Something went very wrong; tall grass caught fire; a blaze raged across 40 square kilometres; 20,000 people were evacuated from their homes; 600 firefighters were called in; water-dropping helicopters were used.   

None of the media reports reveal whether the smoke was blue or pink.

"Stop having these stupid parties. For the love of God, stop burning things down to tell everyone about your kid's penis. No one cares but you," Karvunidis wrote on Facebook after this latest calamity.

The Guardian’s resident columnist about feminism and The Patriarchy, Arwa Mahdawi, wrote a scathing article about the craze. Police “ought to be implementing stop-and-frisk tactics on all heterosexual couples who come within five miles of a heavily wooded area. If the woman’s got a baby bump and the man’s got a dad bod then law enforcement should search them for explosives, stat.”

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
13
 

Maltese doctors appeal for recognition of conscientious objection

Valletta, Malta 

Malta may be small but political battles there are just as heated as everywhere else. The country is debating an equality bill which would ban discrimination on the basis of protected characteristics, such as creed or religion, sexual orientation, gender identity and political opinion, amongst others.

Church schools believe the Equality Act could prohibit them from employing teachers of their choice, even on subjects in which faith itself is not a genuine requirement, for example, the teaching of languages or sciences.

Doctors are also worried about the bill and have called for recognition of a right to conscientious objection.

The Medical Association of Malta said it agreed with the principles of the bill, which in any case were well-established principles of medical ethics which could be enforced by the Medical Council and which were included in the curriculum of medical students and specialist trainees.

“While the MAM is in agreement with the principles behind the Bill, it formally supports the position taken by the Medical Council of Malta recommending the need for conscientious objection, and that amendments are necessary in this regard,” it said.

The bill could make life difficult for doctors who do not accept the morality of abortion and euthanasia.

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
06
 

Assisted dying explodes in Victoria

Daniel Andrews, premier of Victoria, has been under fire from all directions recently over his handling of the Covid-19 pandemic. Mr Andrews, a social progressive who until recently seemed almost indestructible electorally, has been severe in administering a lockdown to protect vulnerable citizens.

The latest chink in the Teflon is a progress report from the Voluntary Assisted Dying Review Board for deaths for the first full year under legislation passed late in 2017. According to The Age:

Ten times more people than expected have chosen to end their lives under Victoria's landmark voluntary assisted dying legislation in the first year.

State government-sanctioned lethal medication was used to end the lives of 124 terminally ill Victorians in the 12 months since the state's landmark euthanasia laws came into effect in June last year, far surpassing initial estimates of just 12 people in the first year.

It was Premier Andrews who predicted that only a dozen or so would die. A year ago, he told the media: “We anticipate in the first 12 months, based on overseas experience, around a dozen people that will access voluntary assisted dying." That number would stabilise at about 100 or 150 people annually.

According to the report, applicants for assisted dying were aged between 32 and 100, with an average of 71 and 44% were female, 55% male, and 1% other. Cases which did not comply with the legislation amounted to only 1%.

As in other jurisdictions, unbearable pain was not a major factor amongst the reasons for requesting assisted dying. In fact, the word “pain” was only mentioned once, and no percentages were given.

 “Loss of autonomy was frequently cited by applicants as a reason for requesting voluntary assisted dying. Other reasons for accessing voluntary assisted dying which were commonly reported included being less able to engage in activities that make life enjoyable, losing control of body functions, and loss of dignity.”

Covid-19 has made it difficult for some patients to have face-to-face assessments with doctors and Federal legislation bars people from discussing suicide over a telephone. The chair of the Voluntary Assisted Dying Review Board, a former judge, Betty King, has called for a change in the law.

“Our voluntary assisted dying laws are giving Victorians who are suffering an incurable illness at the end of their lives a compassionate choice," Victorian Health Minister Jenny Mikakos said. “This review shows that the system is working as it should – with 68 rigorous safeguards in place, making our model the most conservative system in the world.”

Michael Cook is editor of BioEdge



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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September
06