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Saturday, July 31, 2021

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FROM THE EDITOR

Foreign observers might have the impression that it is always open season for euthanasia in the Netherlands. Not so. While the guidelines are elastic and subject to interpretation, they do exist and people violating them risk prosecution.

Two of this week’s stories reflect this. In one, police have arrested a man who, they said, was selling lethal medication for suicide; in the other, the euthanasia bureaucracy and the public prosecutor are fighting over who makes the rules: the bureaucrats or the government.

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2021-07-21 2:37 PM
Netherlands euthanasia 1: the fundamentalists
by | Jul 25, 2021
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tags: euthanasia, netherlands

Suicide drug sold in the Netherlands on the internet 

Foreign observers might have the impression that it is always open season for euthanasia in the Netherlands. Not so. While the guidelines are elastic and subject to interpretation, they do exist and people violating them risk prosecution.

The first story on euthanasia in the Netherlands illustrates this. A pillar of Dutch policy is that only qualified doctors are permitted to help people die.

This week police arrested a 28-year-old Einhoven man, identified as Alex S, and charged him with illegally assisting in suicide, money laundering, and drugs offences. It is alleged that he had sold a suicide drug to at least six people for 20 euros over the internet.

The police stepped in after a woman was found dead after consuming a drug known as Agent X and an accompanying anti-vomiting drug. Police said that Alex S. could have sold these drugs to hundreds. Some of his clients were young people.

According to police, Alex S had links to Cooperatie Laatste Wil (Last Wish Cooperative), a shadowy fundamentalist euthanasia group which promotes "assisted suicide and self-euthanasia without the intervention of doctors”. It believes that access to the means for suicide is a universal human right and is said to have about 36,000 members in the Netherlands. Similar groups operate under the radar in other countries.

Even more indicative of the state of Dutch public opinion was a long feature article in the popular newspaper de Volkskrant about the death of a 28-year-old woman named Marjolein in September 2020. She had a history of depression and mental instability. She also bought the suicide drug from and agent of Cooperatie Laatste Wil. She changed her mind almost immediately, but efforts to rescue her failed. The article concludes:

“Coöperatie Laatste Wil is partly to blame for her daughter's suicide, says mother Yvonne. ‘They took her life. They have helped someone into the other world who still had so many dreams. She wanted to travel, have children. She was a support to others. If you call yourself a rescuer, you can't talk someone to death. Then you have to offer real help.'”

Jos van Wijk, chairman of the CLW, indignantly rejected the family’s accusations of improper conduct. “The CLW adheres to the rules of the law,” he says.

Michael Cook is editor of BioEdge

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Netherlands euthanasia 2: the public prosecutor objects
by | Jul 25, 2021
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Photo by Catalina Fedorova on Unsplash

The Dutch public prosecutor department and regional euthanasia review committees (RTE) are at loggerheads over the rules for carrying out euthanasia.

According to a report based on leaked documents in the newspaper Trouw, the prosecutor believes that the committees are being too lenient with doctors.

The dispute was sparked by a Supreme Court decision last year which exonerated, Marinou Arends, a doctor who gave a lethal injection to a demented woman who fought her off. The death was clearly involuntary. However, the patient had written an advance direction before lapsing into dementia – which, the court ruled, had expressed her true wishes.

According to Trouw, the RTE has amended its guidelines in the light of the court’s ruling. They now state that “doctors are allowed to interpret a written advance directive if it is not completely clear, and that it is primarily up to the doctor to decide whether the law has been complied with on important points.”

“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 on 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.”

However, according to Trouw, PP chief Rinus Otte believes that the RTEs have gone too far in incorporating the ruling into the guidelines and that more people are now eligible for euthanasia than the law actually allows. He believes that doctors should still face prosecution for murder. He has reportedly asked the minister of justice for an “independent investigation” into how the RTEs are applying the law.

Michael Cook is editor of BioEdge

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Ireland sidesteps ‘assisted dying’ debate – for now
by | Jul 25, 2021
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tags: euthanasia, ireland

Gino Kenny in a debate over 'assisted dying'  / screenshot Newstalk 

“Assisted dying” is a live issue in Ireland – unsurprisingly, perhaps, after the electorate repudiated traditional Catholic beliefs on divorce, abortion and same-sex marriage in several referenda.

People Before Profit TD Gino Kenny recently proposed a Dying with Dignity Bill. But the Justice Committee of the Oireachtas, Ireland’s parliament, ruled that it is not workable in its current form. However, the bill was dismissed on technical, not ethical, grounds. The chair of the Committee explained that it was simply not detailed enough:

"The bill itself wasn't fit for purpose to progress, unfortunately as a piece of legislation it didn't stack up. It wasn't robust enough, there were a number of drafting errors, there were a number of technical legal errors. [These] would not only make it subject to challenge in the courts, but also made it legally inconsistent. It just wasn't any state where it could become law … You would really have to start from scratch again, gut the bill and start again.

"By way of comparison, the New Zealand legislator passed a similar piece of legislation which ran to something like 240 pages - this particular bill was four or five pages long. So we said 'Look, it's a very important issue, very glad we had the debate, very glad we had the opportunity to look at it' but this needs to be done properly".

Mr Kenny says he will start again. "I'm under no illusion that there's a lot of work to be done but it can be overcome,” he said. He hopes that a revised version can be passed before the next election.

Michael Cook is editor of BioEdge   

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Kodokushi: Japan’s problem with the old and isolated
by | Jul 25, 2021
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tags: finland, gender dysphoria

Memories 

One consequence of the Covid-19 pandemic in Japan appears to be an increase in kodokushi or solitary deaths. An article in BMC Medical Ethics describes the problem and reviews possible solutions and ethical complications.

With its low birth rate, small families, and rapidly ageing population, Japan has a serious problem with social isolation of the elderly. Reliable statistics are scarce, but in 2003 in Tokyo, there were 1,451 cases of kodokushi; by 2018, that figure had nearly tripled to 3,882.

The new Japanese Prime minister even appointed a “minister for loneliness”, Tetsushi Sakamoto, in February. There are companies which specialise in the grisly business of cleaning up houses or flats where people died alone. Sometimes they are discovered months later.

The journal article evaluates technological fixes. One solution to the social isolation of the elderly is a wearable gadget which transmits information about their well-being to a monitoring agency and also allows them to ask for help if they are in distress.

Should this be mandatory? Given the cost of cleaning after kodokushi, landlords may demand that elderly people wear it as a condition of their lease. This should be avoided, the authors believe:

This is likely to hamper the effectiveness of the resulting system and to the extent that compliance failures are associated with social inequalities, is likely to produce the worst outcomes for the most socially vulnerable.

It would also trespass upon their dignity:

legal or contractual requirements the use of wearables promote adversarial relationships in which intrusive monitoring is instituted to advance the interests of more advantaged parties—such as property owners seeking to preserve the value of their assets—without adequate regard for the autonomy, privacy and personhood of individuals in an already vulnerable population.

They conclude that wearables appear to be a necessity in an ageing population, but they should be used carefully:

Wearable devices provide hold promise as a promising platform for reducing solitary deaths and for linking socially isolated individuals to a broader range of health and social services. But these technologies cannot be effectively deployed in these populations on terms that respect older persons without considerable social support. This support includes closing the digital divide, tailoring devices to user preferences, supporting the ability of users to generate value from these devices and ensuring that there is proper governance of the information they produce.

Michael Cook is editor of BioEdge

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Policy shift in Finland for gender dysphoria treatment
by | Jul 25, 2021
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tags: gender dysphoria

Photo by Sharon McCutcheon on Unsplash

The international activist group SEGM, the Society for Evidence-Based Gender Medicine, has published a review of a radical shift in the standards of care for gender dysphoric children in Finland.

A year ago, the Finnish Health Authority issued new guidelines which back psychotherapy, rather than puberty blockers and cross-sex hormones, as the first-line of treatment. It took this step after a systematic review of the evidence which found the evidence for paediatric evidence “inconclusive”. Here are a few excerpts from SEGM’s summary.

Although pediatric medical transition is still allowed in Finland, the guidelines urge caution given the unclear nature of the benefits of these interventions, largely reserving puberty blocker and cross-sex hormones for minors with early-childhood onset of gender dysphoria and no co-occurring mental health conditions. Surgery is not offered to those <18. Eligibility for pediatric gender reassignment is being determined on a "case-by-case basis" in two centralized gender dysphoria research clinics.

The Finnish guidelines warn of the uncertainty of providing any irreversible "gender-affirming" interventions for those 25 and under, due to the lack of neurological maturity. The guidelines also raise the concern that puberty blockers may negatively impact brain maturity and impair the young person's ability to provide informed consent to the subsequent and more irreversible parts of the Dutch protocol: cross-sex hormones and surgeries.

The Finnish guidelines reflect the growing international concern about the unexplained sharp rise in adolescents presenting with gender dysphoria, which is occurring in increasingly complex developmental and mental health contexts, and often without a childhood history of gender-related distress. There are significant questions as to whether the Dutch protocol (hormonal and surgical interventions for youth), designed for a distinctly different population of high-functioning teens with childhood-onset cross-sex identification and with no significant mental health comorbidities, is appropriate for this novel population.

The Finnish Health Authority states that the guidelines will not be further revised until research is able to: explain the recent sharp rise in adolescents presenting with gender dysphoria; determine whether transgender identities in this population are stable or will evolve; assess whether gender-affirming treatments are able to improve health outcomes of those who present with co-occurring mental health problems, including improvements in depression and suicide; and quantify the rate of regret.

Michael Cook is editor of BioEdge

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A cyborg future may come earlier than we think
by | Jul 25, 2021
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tags: cyborgs

Surpassing the biological limitations of the brain and using the mind to control electronic devices may sound like the distant cyborg future, but it could come sooner than we think.

Researchers from Imperial College London have reviewed commercial brain-computer interface (BCI) devices in the journal APL Bioengineering. The most promising is electroencephalography (EEG), a method for monitoring the brain noninvasively through its electrical activity.

However, EEG-based BCIs, or eBCIs, raise social, ethical, and legal concerns.

Though it is difficult to understand exactly what a user experiences when operating an external device with an eBCI, a few things are certain. For one, eBCIs can communicate both ways. They allow a person to control electronics, which is particularly useful for medical patients who need help controlling wheelchairs, but it may also change the way the brain functions.

"For some of these patients, these devices become such an integrated part of themselves that they refuse to have them removed at the end of the clinical trial," said Rylie Green, one of the authors. "It has become increasingly evident that neurotechnologies have the potential to profoundly shape our own human experience and sense of self."

Intellectual property concerns are also an issue. What if companies own the neural data?

"This is particularly worrisome, since neural data is often considered to be the most intimate and private information that could be associated with any given user," said Roberto Portillo-Lara, another author. "This is mainly because, apart from its diagnostic value, EEG data could be used to infer emotional and cognitive states, which would provide unparalleled insight into user intentions, preferences, and emotions."

The potential is not just medical. The eBCIs might be used for cognitive enhancement, causing imbalances in academic or professional success and educational advancement. Disparities in access could also exacerbate existing social inequalities.

"This bleak panorama brings forth an interesting dilemma about the role of policymakers in BCI commercialization," Green said. "Should regulatory bodies intervene to prevent misuse and unequal access to neurotech? Should society follow instead the path taken by previous innovations, such as the internet or the smartphone, which originally targeted niche markets but are now commercialized on a global scale?"

Michael Cook is editor of BioEdge

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