FROM THE EDITOR
We’re back from the Easter holidays, which in Australia are far longer than elsewhere, thank goodness. To get back into the rhythm of things, we have published two articles about “fake news” and bioethics. One reports that prospective IVF parents in Mississippi discovered to their horror that they were twins separated at birth. This went around the world before some spoilsport blew the whistle on it. The other is an announcement by British billionaire Richard Branson that he is setting up a sperm bank for dyslexics. Branson being Branson, it’s hard to tell whether this is fake news or not, but I suspect that it is.
The problem with BioEdge, some readers tell us, is that everything sounds like fake news. This, of course, is not true; we take great care to check our sources. However, all too often the articles seem to have been composed in some gigantic facility manned by bad news elves.
In fact, when you read today’s lead story, “Euthanised organ donors could dramatically shorten waitlists in Belgium, say doctors”, I must concede that it does sound so implausible as to be fake. But it’s not a report from The Onion, but from the Journal of the American Medical Association. Go figure.Click Here to Comment on this letter
|This week in BioEdge|
Ellinor Grimmark speaking to the press
Swedish midwife Ellinor Grimmark has decided to appeal to the European Court of Human Rights over Sweden’s hard line on conscientious objection.
The Swedish Appeals Court decided earlier this month that the government can force medical professionals to perform and cooperate in abortions, or else be forced out of their profession. Because the ruling in Grimmark v. Landstinget i Jönköpings Län appears to contradict international law protecting conscientious objection, Grimmark wants to appeal to Strasbourg.
Three different medical clinics denied her employment because she will not assist with abortions. In Sweden, midwives are essentially nurses who specialize in pregnancy and child birth and seldom do abortions. It would have been relatively easy to find a way to accommodate Grimmark’s preferences.
However, the clinics’ intransigence has meant that Grimmark and her family have had to move to neighbouring Norway. “In the beginning, I was hoping to stay in Sweden,” she told Fox News. “But we have now made Norway home. I have a job here where they are not concerned with my beliefs.”
In November 2015, a district court found that her right to freedom of conscience had not been violated by refusing to employ her. That court even required her to pay the local government’s legal costs of 100,000 Euros (US$106,000).
“Participation in abortions should not be a requirement for employment as a medical professional. In accordance with international law, the court should have protected Ellinor’s fundamental right to freedom of conscience,” said Robert Clarke, of the Alliance Defending Freedom (ADF International), an American group which is helping with Grimmark’s case.
“The desire to protect life is what leads many midwives and nurses to enter the medical profession in the first place,” Clarke said. “Instead of forcing desperately needed midwives out of their profession, governments should safeguard the moral convictions of medical staff. The Parliamentary Assembly of the Council of Europe has affirmed that ‘no person, hospital or institution shall be coerced, held liable, or discriminated against in any manner because of a refusal to perform, accommodate, assist, or submit to an abortion.’ As a member state, Sweden must be held to its obligation to respect this freedom.”
The shut-up-or-leave approach to conscientious objection in healthcare issues is widely accepted in Sweden. In a recent article in the Journal of Medical Ethics, bioethicist Christian Munthe, of the University of Gothenburg, explains that “No legal right to conscientious refusal for any profession or class of professional tasks exists in Sweden, regardless of the religious or moral background of the objection”. Swedes feel a strong commitment to civic duties and non-discrimination.
However, the “Swedish solution” may be eroding, for two reasons, neither of them related to Grimmark’s complaint.
The first is political. The general council of the Swedish Medical Association recently agreed to work toward a legal right to conscientious refusal to refer patients to clinics offering alternative medicine. The doctors feel that these upstarts should not be included in the healthcare system.
The second is the very real possibility that Sweden may someday legalise euthanasia or assisted suicide. The medical profession opposes this unless the law includes a provision for conscientious objection. So paradoxically, as Munthe points out, at the moment the Swedish solution to conscientious objection both supports abortion and blocks euthanasia.
Michael Cook is editor of MercatorNet.
Transplant surgery has developed rapidly since the first successful heart transplants in the late 1960s. Newly developed techniques includes uterus, penis and larynx transplantations, and some researchers may shortly attempt to transplant testicle, ovary and fallopian tubes.
In a new article in the Journal of Medical Ethics, bioethicists Arthur Caplan and Duncan Purves explore the novel ethical questions that arise from this “quiet revolution” in the world of human organ transplantation.
The authors note that there are different ethical considerations for transplantations that are not concerned with extending life (as, for example, a heart or lung transplant is typically concerned with). These new procedures, they argue, require us to ‘rethink’ the traditional risk-benefit analysis used to evaluate the ethics of transplantation:
"the shift away from saving lives to making them better requires a shift in the ethical thinking that has long formed the moral rationale for organ transplantation. Doctors, patients, regulators, donors and payers need to rethink the risk and benefit ratio represented by trade-offs between saving life, extending life and risking the loss of life due to the quality of life-enhancing transplant surgery."
Caplan and Purves consider various complexities surrounding ‘life-enhancement’ transplantation, such as whether we can really measure quality of life against quantity of life, or whether the risk of “losing everything” in death always outweighs the potential gain of life enhancement. They argue that doctors and patients must carefully scrutinised the ostensible advantages of such procedures.
"novel forms of transplantation carry with them all of the risks of reconstructive surgery (eg, death from anaesthesia and post-surgery complications such as infection), but they also increase the risk of infection because of their reliance on immunosuppressives, which are often accompanied by unique risks (eg, significant increase in long-term cancer risk and organ failure). Because the threat to quantity of life is so great in the transplant context, special attention must be paid to ensure that the expected improvements in quality of life are sufficient to outweigh it."
Deaths by euthanasia increased 10% in the Netherlands in 2016, according to a new report published by the country’s Regional Euthanasia Review Committees (RTE).
Most of the cases of euthanasia involved people with cancer, serious heart or lung problems or diseases of the nervous system such as ALS.
There were 32 more cases of assisted suicide involving people with dementia, most of whom were in the early stages of the disease. In addition, there were 60 cases involving people with severe psychiatric problems, a rise of four on 2015.
The committee reported that in 10 of the cases the “executive doctor” did not comply with due diligence, and in some these cases, there were concerns that the doctor involved did fulfill the requirements of informed consent for the procedure.
Many healthcare analysts doubt the reliability of the committee's review process, and some suggest that complaints should be made directly to the Supreme Court.
The Indian state of Assam may enact a strict 'two child policy' in response to concerns about rapid population growth in the region.
Regional authorities are seeking public feedback and recommendations on draft population policy that would prevent citizens of the region with more than two children from applying for particular civil service and government jobs.
Assam Health Minister Himanta Biswa Sarma was reported as saying that, “Persons will not be eligible to apply for government jobs, and for that matter any kind of government service including that of becoming members of the panchayat and civic bodies.” “Assam is facing a dangerous population explosion, and this is one of the several measures we have proposed in the draft population policy”, he said.
According to census data quoted in a preamble to the draft policy, there was a population increase of close to 5 million in the period 2001-2011, taking the region’s total population to 31.2 million at the time of the census.
Some commentators believe that the proposed policy will fail to address deeper economic issues facing the region of Assam.“Assam’s poor don’t need population control programs”, wrote Jonathan Abbamonte of the Population Research Institute. “They need roads and bridges to get their agricultural goods to market, access to secure housing, and better educational opportunities to help lift them out of poverty”, Abbamonte argued.
Several Belgian physicians argue in a recent research letter in JAMA that encouraging the practice of organ donation after euthanasia will help reduce the waitlists for organ donation.
“In 2015, 1288 people were on the Belgian organ transplantation waiting list. An estimated maximum of 10.1% of all patients undergoing euthanasia could potentially donate at least 1 organ, with 684 organs potentially available for donation. In 2015, 260 deceased donor kidneys were donated; if 400 kidneys were donated by patients undergoing euthanasia, the potential number of kidneys available for donation could more than double.”
However, they acknowledge that enthusiasm for this novel method needs to be tempered by an awareness of some of its limitations. Patients who will be euthanised need to agree to donate their organs and they have to die in a hospital setting. Often people prefer to die at home.
At the moment, organ donation after euthanasia, they say, is only allowed in Belgium and the Netherland and is still relatively uncommon. There have been reports that it may be happening in Canada as well.
The article does not take into account trends in the type of patient who undergoes euthanasia. Many patients were excluded from their calculation because they were too old or were suffering from diseases like cancer which are more common amongst the elderly. But if euthanasia become common for psychiatric conditions, younger patients who are physically healthier might expand the pool of organs even further.
It had to happen sooner or later: fake news about bioethics. Fake, not in the sense of exaggerated, or slanted, or partial, or badly researched, but authentically fake, like the Rolex watches you can buy for $10 in Bangkok.
Several major online newspapers in the US and UK published a shocking story about a couple in Jackson, Mississippi, who sought IVF treatment and learned that they actually were twins separated at birth.
The doctor who broke the news described how the wife pleaded with him to admit he was joking, but he added: “I wish that I was, but they had to know the truth.” ...
The unnamed doctor added: “The husband said that a lot of people remarked on the fact they shared the same birthdays and looked similar to each other, but he said it was just a funny coincidence and that the couple were definitely not related.”
The pair are now said to be re-considering their future together.
The sensational news was based on an article in a publication called the Mississippi Herald, which has no contact details or physical address, and had been set up only a few days before.
It was, according to Snopes, the internet fact-checker, “set up for no other ostensible purpose than to spread fictitious stories. And a number of online ‘news’ publications ran with one of their fictitious stories without having made the slightest attempt to verify it, based on nothing more than one dubious source that should have raised a plethora of red flags in a real newsroom.”
British billionaire entrepreneur Richard Branson is either a practical joker or a quirky eugenicist. On March 31 he announced the creation of the world’s first dyslexia-only sperm bank.
In the past, some sperm banks in the UK rejected dyslexic donors because they might be carriers of “common genetic diseases or malformations”. Ironically, they were reproached for being “eugenicist”. But Branson says on his personal blog that
“this is absurd when you think that some of the most successful people in the world are dyslexic. Rather than being seen as a weakness, dyslexia should be seen as a strength ... Dyslexia has been a massive help for me personally; it makes me think creatively and laterally, two major factors that helped me create Virgin and build a global brand ...Dyslexia is a different way of thinking, not a disadvantage and it shouldn’t stop young people from achieving success and striving to make their dreams a reality.”
The notion has the air of prank, but Branson says that he will launch “the world’s first dyslexic sperm bank” in London on May 2. A website already exists, MadeByDyslexia.org, which also promises great things on May 2.
As Stat noted, Branson’s holding company, the Virgin Group, has a habit of making announcements on April Fool’s Day, like left-handed telephones, a trip into an active volcano, and using trained ferrets to lay underground cables.
Watch this space.
An Australian government body has just released its first major update of guidelines for assisted reproductive technology in 10 years. The most controversial decision by the Australian Health Ethics Committee of the National Health and Medical Research Council was to continue a ban on sex-selection by IVF clinics. It says that “AHEC does not endorse, or wish to perpetuate, gender stereotyping or cultural or personal biases based on biological sex”. Therefor the current policy will remain in place: “admission to life should not be conditional upon a child being a particular sex”.
It appears that almost no one in the IVF industry is happy with this outcome. Doctors claim that there is considerable demand from couples for sex-selection for “family balancing”. Associate Professor Mark Bowman, of Genea, a major chain of clinics, responded that “individual Australians’ personal freedom to make informed reproductive choices is arbitrarily restricted.”
The vice president of the Fertility Society of Australia, Prof Michael Chapman, told The Guardian Australia that every week he had a patient who expressed a strong desire to “gender balance” their family. Some were so distressed they required psychiatric care.
“The conservatives ultimately won,” Chapman said. “There is a significant minority of the Australian population, particularly women in their reproductive years, who would accept the concept of gender balancing. Those couples will be continued to be forced to go overseas to clinics that are not as of high standard as those in Australia.”
“We will be seeking legal advice,” said fertility specialist David Molloy, a former head of the Australian Medical Association in Queensland. “This is a farce and the council has left doctors unsure of their rights.” Since sex-selection is not actually illegal in his state, he says that he will defy the guidelines and offer sex-selection for family balancing.
However, one bioethicist contended that selection on the basis of sex was troubling because it assumes that
“there are two types of children, boys and girls, they have essentially different personalities and traits and offer significantly different parental experiences. Allowing sex selection for social reasons would send out a message that it is acceptable to create children to fit preconceived binary gender roles.”
Tereza Hendl, of the University of Sydney, said that sex selection would ultimately curb a child’s options for behaving in gender nonconforming ways.
You know that CRISPR and gene editing have gone mainstream when they are the subjects of an airport thriller. The latest novel from New York Times bestselling author Daniel Suarez is called Change Agent and deals with shadowy criminal gangs who battle for control of genetic modification in the year 2045. From the blurb:
In 2045 Kenneth Durand leads Interpol’s most effective team against genetic crime, hunting down black market labs that perform “vanity edits” on human embryos for a price. These illegal procedures augment embryos in ways that are rapidly accelerating human evolution—preying on human-trafficking victims to experiment and advance their technology.
With the worlds of genetic crime and human trafficking converging, Durand and his fellow Interpol agents discover that one figure looms behind it all: Marcus Demang Wyckes, leader of a powerful and sophisticated cartel known as the Huli jing.
But the Huli jing have identified Durand, too. After being forcibly dosed with a radical new change agent, Durand wakes from a coma weeks later to find he’s been genetically transformed into someone else—his most wanted suspect: Wyckes.
Now a fugitive, pursued through the genetic underworld by his former colleagues and the police, Durand is determined to restore his original DNA by locating the source of the mysterious—and highly valuable—change agent. But Durand hasn’t anticipated just how difficult locating his enemy will be. With the technology to genetically edit the living, Wyckes and his Huli jing could be anyone and everyone—and they have plans to undermine identity itself.
Why 2045? Given the pace of change, 2025 seems a more likely date.
Find out for yourself: it will be released on April 18.