FROM THE EDITOR
There is plenty of variety in this week’s BioEdge: a euthanasia pioneer surveys its progress in the Netherlands; a neuroethicist despairs over ‘fake news’; a legal expert assesses the chances of Noel Conway’s assisted dying request in the UK; an important new paper asks whether puberty suppression for transgender kids is ethical...
But the big news is that BioEdge (and its editor) are taking a solstitial holiday for a few weeks. The next issue will arrive on about July 21.
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|This week in BioEdge|
Fake news has a bioethical dimension, argues neuroethicist Neil Levy, in The Hastings Center blog.
Levy, who works at the University of Oxford and the University of Melbourne, argues that media literacy is not going to solve the problem of “fake news”.
For one thing, the response seems to require what it seeks to bring about: a better informed population. For another, while greater sophistication might allow us to identify many instances of fake news, some of it is well crafted enough to fool the most sophisticated (think of the recent report that the FBI was fooled by a possibly fabricated Russian intelligence report).
In Levy’s estimation, the problem is seriously intractable. Efforts to combat fake news with facts and arguments often strengthen false beliefs.
Familiarity – processing fluency, in the jargon of psychologists – influences the degree to which we come to regard a claim as plausible. Due to this effect, repeating urban legends in order to debunk them may leave people with a higher degree of belief in the legends than before. Whether for this reason or for others, people acquire beliefs from texts presented to them as fiction. In fact, they may be readier to accept that claims made in a fictional text are true of the real world than claims presented as factual.
If education won’t work, what is to be done? Disappointly Levy says, “I must confess I don’t know.” But he suggests that there should be more research into making true information more palatable through “informational nudges” or “nudges to reason”. This is a topic which he discussed at length in the Journal of Medical Ethics recently. Although he provides no details of what he has in mind, he contends that such nudges would be ethical because they lead people towards the truth:
Perhaps there are nudges that make us more sensitive to genuine evidence that work by bypassing our deliberative capacities, but at least some such nudges appeal to capacities that are partially constitutive of these capacities. There is therefore no more reason to worry that such nudges undermine our autonomy or responsible agency than that arguments generally threaten these things.
The government of Texas will allow clinics across the state to market unapproved stem-cell therapies, in a move that has met with criticism from bioethicists.
Last week Governor Greg Abbott signed off on the new legislation that allows clinics to by-pass FDA approval for investigational stem cell treatments for patients with certain severe chronic diseases or terminal illnesses. Like “right to try” laws in other States, the Texas legislation will give desperate patients access to therapies that provide hope after traditional medical treatments have failed.
Currently, most patients wishing to have stem-cell therapy have to travel out of the country to receive it. The new law will allow people with severe chronic or terminal illness to be treated at a clinic that purports to isolate therapeutic stem cells from adult tissue—such as a patient’s own fat—if their doctor recommends it after considering all other options, and if it’s administered by a physician at a hospital or medical school with oversight from an institutional review board (IRB). It also requires that the same intervention already be tested on humans in a clinical trial.
The law sanctions a much broader set of therapies than federal rules, which already exempt certain stem cell interventions from FDA’s lengthy approval process, provided the cells are only “minimally manipulated” and perform the same function they normally have in the body.
Bioethicists have expressed their concern at the move, which they say puts patients at risk of the effects of dangerous, untested therapies.
University of Minnesota bioethicist Leigh Turner said he was sceptical about whether the clinics would be adequately monitored, while NYU Langone Medical Center bioethicist Beth Roxland said it was insufficient to have the therapies tested in clinical trials while by-passing FDA approval. “You could gain access to something [as long as it’s] being studied in a human … somewhere on the planet,” Roxland told Science, “which in the stem cell area makes it really very scary.”
Guidelines from the CIA’s Office of Medical Services in December 2004
For years now, the CIA’s “enhanced interrogation” program after 9/11 has been under fire for being torture. The Physicians for Human Rights (PHR) says that it should also be framed as illegal and unethical human experimentation.
According to PHR report released this week, recently declassified documents confirm that the CIA conducted experimental research to test an unsupported hypothesis that torture could break the resistance of detainees and aid interrogation. This research was conducted to support the operation of the “enhanced interrogation” program and to provide legal cover for the use of torture to the Bush administration.
“The CIA torture program was based on the unproven theory that torture could produce compliance and ultimately assist with intelligence collection,” says Sarah Dougherty, the lead author of the report. “Although it was junk science, it was peddled by two psychologists who saw an opportunity to make a profit by setting in motion a crude program of experimentation to study the effects of torture on detainees. Even if this research had been benign, it’s still illegal to perform research without informed consent.”
“Because their torture tactics were wholly unproven – even the CIA previously said torture was counterproductive – [James] Mitchell, [Bruce] Jessen, and nameless others used observations during torture to formulate clinical procedures to modify subsequent torture techniques and guide similar monitoring for future torture sessions,” said PHR’s director of programs, Homer Venters. “Instead of living by the ethical tenet of ‘do no harm,’ health professionals applied their professional skills and engaged in research to aid torture. This was human experimentation on nonconsenting prisoners who were being tortured, a crime within a crime.”
The PHR also claims that health professionals were under pressure from the CIA to generate data to justify torture practices. They were also used to determine the threshold of pain and suffering of the torture subjects, calibrating levels as they progressed. That data was then used by CIA legal counsel to provide legal cover, with the CIA’s lawyers advising officers that such evidence could be used to sidestep criminal prosecution for torture.
“Health professionals were used to give experimental torture practices a false mantle of safety and legitimacy,” says Dougherty. “There’s evidence that CIA personnel recognized that illegal human experimentation was taking place. The CIA’s own contracts with Mitchell and Jessen even referred to the program as ‘applied research.’ Any researcher or health professional even minimally versed in the basics of ethics and professionalism can tell you that such research without consent is completely outside the realm of the acceptable.”
More than 8,000 civilians have been killed in the battle for Mosul, formerly an ISIS stronghold in northern Iraq, since the Iraqi Army launched an assault in November. An estimated 2,000 ISIS soldiers have died, and about 800 of the coalition troops.
But there are also thousands of wounded who are being treated in frontline clinics by a variety of organisations, some commercial outfits, others NGOs sub-contracted by the World Health Organisation. Because the environment is so dangerous, most of them are embedded in the Iraqi Army. When a patient enters, government officials check to see if he is an ISIS militant or sympathiser.
Is this ethical?
The answer given by Jonathan Whittall, of Médecins Sans Frontières/Doctors Without Borders (MSF), is an emphatic No. Whittall is working in Mosul for MSF, which has tried to put itself at arms’ length from the Iraqi Army. “If healthcare is only carried out as a component of the overall military strategy, it undermines the very basis of medical ethics,” he writes in a blog post in the BMJ.
Using health facilities in this way for law enforcement purposes makes health facilities places to be feared and further aligns healthcare to one side of this conflict. This violates the ethical duties that should guide the medical profession and which the World Health Organisation (WHO) adheres to. Yet it is this same WHO that has subcontracted its emergency health programme to these hospitals incorporating the screening practice.
Whittall also fears that this policy will backfire when this war winds down. He writes:
“The potential longer term consequences are also daunting: when the temporary anti-IS alliance of normally opposing armed actors begins to unravel, the perception of humanitarian actors will likely be tainted by this embedding practice. For now it looks like medical assistance serves the interests of the central state (or its foreign backers)—a state many of the armed groups oppose. The security implications of this for all those trying to work in Iraq in the future could be grave.”
Unsurprisingly, Whittall’s point of view was criticised as unrealistic. One of the comments beneath his post reads:
MSF is talking like they are inside the city, when the reality is that they are far away in different villages, without these NGOs MFS would only be receiving body bags. MSF is doing a great job running their field hospital outside of Mosul, but there is a great need for healthcare workers all the way up front to provide emergency medicine and trauma stabilization, a job MSF don't want to do.
The same doctor who delivered the first “three parent baby” is now attempting to commercialise mitochondrial replacement therapy (MRT). Dr John Zhang of New Hope Fertility Clinic in New York is now offering MRT for older women suffering from infertility. For roughly US$80,000, women can avail themselves of what New Hope calls "revolutionary technology designed to reverse the effects of age on human oocytes and repair certain cellular defects."
At the heart of Zhang’s entrepreneurial project is the idea that the cause of infertility in older women is defective mitochondrial DNA. Zhang’s experimental procedure involves inserting the nucleus of an older woman’s oocyte into a young egg with healthy mitochondrial DNA (a procedure known as spindle nuclear transfer). In doing so, he believes he will allow older women to produce viable embryos.
MRT is currently illegal in the US, so Zhang’s company, Darwin Life, has set up a clinic in Guadalajara, Mexico, where they can perform the procedure. Zhang says his company has already received hundreds of enquiries from prospective patients.
Many are critical of the new experimental technique.
“This is a biologically extreme and risky procedure,” says Marcy Darnovsky, executive director of the Center for Genetics and Society, a group that questions advances in biotechnology. “If you’re talking about using these techniques for age-related infertility, that’s really moving the human experimentation to a very large scale.”
Yet Zhang’s plans go much further than treating infertility. He says a future step will be to combine the technique with editing genes, so that parents can select hair or eye color, or maybe improve their children’s IQ. “Everything we do is a step toward designer babies,” Zhang told the MIT Technology Review. “With nuclear transfer and gene editing together, you can really do anything you want.”
The January issue of National Geographic magazine featured profiles of gender-bending young people around the world, from the United States to Samoa. It was surfing a wave of interest in gender dysphoria amongst children. In the United Kingdom, the Gender Identity Development Service, which treats only children under the age of 18, has reported an incredible surge of interest. In 2009/10, 94 children were referred to it, but 1,986 in 2016/17 — an increase of 2,000 percent.
What are parents and doctors supposed to do when children insist that they have been “born in the wrong body”? Or like 9-year-old Oti, another of National Geographic’s case studies: “When she learned to speak, she didn’t say, ‘I feel like a girl,’ but rather ‘I am a girl’.”
Parents are torn.
On one hand, it is ethically questionable whether a child can consent to transitioning to another gender. The teenage brain is still undeveloped; most are not capable of planning beyond next weekend’s party, let alone the rest of their lives. How can 17-year-olds possibly know what it means to be a man or a woman if they have not experienced it? How can a 9-year-old?
But parents want their children to be happy. So often, the solution proposed by doctors and counsellors is “transitioning”. This means affirming the new gender of small children, suppressing puberty as they grow older, and eventually having “gender affirmation surgery” when they reach 17 or 18 or later.
But a stunning new article in the journal The New Atlantis questions the science behind this increasing popular pathway for gender dysphoric kids. The authors are an endocrinologist, Paul W. Hruz, a medical statistician, Lawrence S. Mayer, and a psychiatrist, Paul R. McHugh.
First of all, they contend, despite all the glowing cover stories and TV specials,
There is strikingly little scientific understanding of important questions underlying the debates over gender identity — for instance, there is very little scientific evidence explaining why some people identify as the opposite sex, or why childhood expressions of cross-gender identification persist for some individuals and not for others.
Second, even though children can be very stubborn and persuasive about their conviction that they are in the “wrong body”, most of them do grow out of it. According to the Diagnostic and Statistical Manual of Mental Disorders, the bible of psychiatry, studies show that between 70 and 98 percent of boys do not persist and 50 to 88 percent of girls. So, alarmingly, kids are being treated with hormones and surgery for a condition which they may grow out of naturally.
And third, the central point of their research, the success of puberty suppression is unproven. No clinical trials have been conducted. The cute kids who appeared in National Geographic are basically research subjects in a potentially dangerous experiment. “Regardless of the good intentions of the physicians and parents, to expose young people to such treatments is to endanger them,” say the authors.
As they point out, “Experimental medical treatments for children must be subject to especially intense scrutiny, since children cannot provide legal consent to medical treatment of any kind (parents or guardians must consent for their child to receive treatment), to say nothing of consenting to become research subjects for testing an unproven therapy.”
Supporters of puberty suppression claim that it gives children space to explore their sexuality. Professor Art Caplan, the most quoted bioethicist in the American media, has said that “if it’s decided to stop the treatment, puberty will resume.” Norman Spack, of Boston’s Children Hospital, a renowned expert on gender dysphoria, describes the effect of the drugs as “totally reversible.”
But the authors dismiss the notion of “reversibility” as a myth. We cannot turn back the clock.
If a child does not develop certain characteristics at age 12 because of a medical intervention, then his or her developing those characteristics at age 18 is not a “reversal,” since the sequence of development has already been disrupted. This is especially important since there is a complex relationship between physiological and psychosocial development during adolescence. Gender identity is shaped during puberty and adolescence as young people’s bodies become more sexually differentiated and mature. Given how little we understand about gender identity and how it is formed and consolidated, we should be cautious about interfering with the normal process of sexual maturation.
There is very little evidence for resumption of completely normal development after puberty suppression. “There certainly have been no controlled clinical trials comparing the outcomes of puberty suppression to the outcomes of alternative therapeutic approaches [and] there are reasons to suspect that the treatments could have negative consequences for neurological development.” In boys there is some evidence that puberty suppression may be associated with testicular cancer and obesity.
The claim that puberty-blocking treatments are fully reversible makes them appear less drastic, but this claim is not supported by scientific evidence. It remains unknown whether or not ordinary sex-typical puberty will resume following the suppression of puberty in patients with gender dysphoria. It is also unclear whether children would be able to develop normal reproductive functions if they were to withdraw from puberty suppression. It likewise remains unclear whether bone and muscle development will proceed normally for these children if they resume puberty as their biological sex. Furthermore, we do not fully understand the psychological consequences of using puberty suppression to treat young people with gender dysphoria.
So, the authors contend, the mantra that puberty suppression is “totally reversible” may be close to being totally bunk.
Modern medicine prides itself on rigorous testing of hypotheses, careful analysis of ethical issues, and diligence in follow-up studies. This is what differentiates it from the hexes of witchdoctors and the nostrums of snake oil salesmen. But when it comes to gender dysphoria, they claim, the profession is ignoring the most elementary requirements of good science. As the authors point out:
Physicians should be cautious about embracing experimental therapies in general, but especially those intended for children, and should particularly avoid any experimental therapy that has virtually no scientific evidence of effectiveness or safety. Regardless of the good intentions of the physicians and parents, to expose young people to such treatments is to endanger them.
This study is the most significant push-back to date against the conventional wisdom about children who want to transition to a different gender. The conclusions reached by Hruz, Mayer, and McHugh will be bitterly disputed; they will be smeared on Twitter as transphobic bigots, shills for conservative think tanks and mediocre scientists. That’s the way that debate on this issue is normally conducted at the moment. But it will be interesting to see how transgender experts deal with the ethical issues they have raised.
Michael Cook is editor of MercatorNet.
If there is anyone who could be called a patron saint of Dutch euthanasia, it is the psychiatrist Boudewijn Chabot. In 1991 he gave one of his patients, Mrs B, a lethal dose of medication. After accompanying her until she died he reported himself to the police and was subsequently tried. In 1993, the Supreme Court declare that he was guilty of assisting a suicide, but did not punish him and allowed him to keep practicing medicine.
Physically, there was nothing wrong with Mrs B. Nor did she have depression. But her personal life was tragic and Dr Chabot felt that she in a state of existential distress that she should be allowed to die. It was a landmark case in the steady advance towards legalisation in 2002.
That was 25 years ago. Now Dr Chabot looks back and is horrified. Writing in one of the leading Dutch newspapers, NRC Handelsblad, he says that legal safeguards for euthanasia are slowly eroding away and that the law no longer protects people with psychiatric condition and dementia.
The Dutch are complacent about their famous law, he says. But there is no room for complacency.
Under current legislation, euthanasia is only legal if a doctor believes that three conditions have been met: (1) the request must be voluntary and deliberate; (2) there must be unbearable suffering with no hope of improvement; and (3) there must no reasonable alternative to euthanasia.
However, as euthanasia has sunk its roots deeper and deeper into Dutch medicine, the second and third conditions have shrivelled up. Patients define what is unbearable and they define what is a reasonable alternative. Unhappiness can be unbearable and a nursing home may not be a reasonable alternative. So, as one ethicist has observed, requirements (2) and (3) “add little to the requirement of a voluntary and thoughtful request”. Autonomy has trumped medicine. As a result, the number of euthanasia cases roughly tripled between 2007 and 2016, from 2000 to 6000.
In itself, this does not bother Dr Chabot. After all, he is the Grand Old Man of Dutch euthanasia. He says that he is prepared to accept tens of thousands of euthanasia cases. But he is aghast at the rapid rise in the number of people with psychiatric illness or dementia who have been euthanised:
What does worry me is the increase in the number of times euthanasia was performed on dementia patients, from 12 in 2009 to 141 in 2016, and on chronic psychiatric patients, from 0 to 60. That number is small, one might object. But note the rapid increase of brain diseases such as dementia and chronic psychiatric diseases. More than one hundred thousand patients suffer from these diseases, and their disease can almost never be completely cured.
One sign of the changing times is the rapid expansion of the services of the End of Life Clinic Foundation (Stichting Levenseindekliniek). This organisation offers euthanasia to patients whose own doctors have refused. They never offer to treat the underlying illness, whether it is physical or mental.
By 2015, a quarter of euthanasia cases on demented patients were performed by these doctors; in 2016 it had risen to one third. By 2015, doctors of the End of Life Clinic performed 60 percent of euthanasia cases in chronic psychiatric patients, by 2016 that had increased to 75 percent (46 out of 60 people).
Last year, Dr Chabot points out, doctors from the End of Life Clinic each performed about one euthanasia every month. “What happens to doctors for whom a deadly injection becomes a monthly routine?” he asks.
Now the End of Life Clinic is recruiting psychiatrists to service the mentally ill and demented. One obvious problem is that there is a shortage of good psychiatric help in the Netherland – which tends to take a long time have an effect, in any case – because of budget cuts.
Without a therapeutic relationship, by far most psychiatrists cannot reliably determine whether a death wish is a serious, enduring desire. Even within a therapeutic relationship, it remains difficult. But a psychiatrist of the clinic can do so without a therapeutic relationship, with less than ten ‘in-depth’ conversations? Well …
Dr Chabot is deeply sceptical about euthanasia for the demented: “we are dealing with a morally problematic act: how do you kill someone who does not understand that he will be killed?”.
How? It turns out that sometimes a relative or doctor secretly laces their food or drink with a sedative to make it easier to give them a lethal injection. In one notorious case last year, the sedative didn’t work and relatives pinned the terrified woman to the bed while the doctor gave the lethal injection. Dr Chabot was astonished to discover that “surreptitious administration of medication has previously occurred, but has never been mentioned in an annual report.”
Isn’t anyone paying attention to these developments, Dr Chabot asks.
The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.
After surveying the wreckage of the euthanasia law, Dr Chabot concludes bitterly,
I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.
Michael Cook is editor of BioEdge. Dr Chabot’s original article in NRC Handelsblad was translated by Professor Trudo Lemmens, of the University of Toronto Faculty of Law. Excerpts have been republished from his blog with permission.
What do medical students think about euthanasia? A new article in the journal Chest discusses some of the concerns held by the next generation of US medical professionals. The authors of the paper, students from several of the leading medical schools in the country, express grave concerns about the normalisation of euthanasia in end-of-life care.
Commenting on new legislation introduced in US states such as Colorado, the authors remark:
The sum of these new laws and rulings strongly conveys the impression that once a person is eligible for hospice, his or her life may no longer have worth, and a “healthy” and “reasonable” thing to do is to request to end one’s own life. We reject this proposed shift of the true purpose of medicine, and we reject the pressure to legitimize this shift through the involvement of medical professionals in an act fundamentally antithetical to our core ethical principles.
Doctor-patient trust, the authors assert, is founded upon the notion that doctors “will commit to doing their best to heal and care for patients and will not intentionally kill those entrusted to their care”. The students fear that PAS/E violates the fundamental bond of trust.
Indeed, the authors call upon doctors to return to the original meaning of euthanasia:
“In its first studies in the 19th century, "euthanasia" was originally defined as focusing on improving patients' quality of life and easing the process at the end of life, but never at the expense of promoting practices which could hasten a patient's death. We strongly implore our present and future colleagues to return to this original definition.”
The American Medical Student Association currently has a position of conditional support for physician aid in dying.