In a controversial move last week the West Australian Reproductive Technology Council authorised an IVF clinic to screen out potentially autistic embryos. Autism is a multi-factorial condition, so there is no genetic test at the moment. However, since boys are four to five times more like to develop autism, the clinic will screen out males and select a female embryo. It appears, from a report in the West Australian, that the family requesting the PGD already had two autistic boys.
However, screening does not guarantee that the daughter would not also have autism.
Is this eugenicist? Possibly, says autism expert Andrew Whitehouse, of the University of Western Australia. But it has to be done. In an article in The Conversation, he called for an urgent debate about the ethics of screening out autistic children. Autism is a disability and quality of life is remarkable better where it is absent, he argued.
He insisted that autistic people should be respected and cherished, but suggested that there was no pressing need for more of them:
“It is without question that a person’s life would be improved if they were free from intellectual disability, if they had the facility to communicate more freely, and if they had the capacity to live independently.
“To want a person to live without disability does not diminish in any way our love for people in these circumstances, nor their irreplaceable importance in our lives. Only a minority of our community know the challenges (and joys) of raising a child with significant disability. It is just plain wrong for people who have never been in this position to judge the wants and desires of those who have.”
Sooner or later a genetic test will be available. Society should be ready for the inevitable debate about autism and eugenics, he says.
The UK’s fertility watchdog, the Human Fertility and Embryology Authority, has lost a significant court battle to limit the number of multiple births from IVF treatment. In a case that went to the High Court, Mohamed Taranissi, the manager of two IVF clinics, challenged the HFEA's right to impose a quota on the number of multiple births in each clinic. The high court ruled in favor of Taranissi, saying that decisions about implanting multiple embryos should be made on case-by-case medical grounds. Having a quota would impede this.
There are far greater risks involved in multiple births. The likelihood of disability and long term health conditions is significantly increased, and there is a greater chance of premature birth.
In a radical response to the decision, the HFEA has scrapped its license criterion that clinics limit the number of multiple births to 10%. The authority thought it unjust that some clinics be exempt from regulations imposed on others: "It is simply not appropriate that two of the 83 IVF clinics should not have this particular condition on their licences. Professionals are entitled to a level playing field and, by removing this licence condition, that is what we will achieve."
Despite this move, the HFEA still stands by its multiple births policy. "We will still expect clinics to bring the multiple birth rate down to 10% – in the interests of IVF mothers and their babies," said HFEA chair Lisa Jardine.
The Council of Europe, the leading organisation for human rights in Europe, is drafting a convention to ban organ trafficking which could come into force next year. According to Deutsche Welle, the convention would punish people who force others to surrender their organs or who receive them. It will target middlemen and corrupt surgeons.
The convention will not be binding on all European states but will be a model for them to follow. Wenzel Michalski of Human Rights Watch described the Council of Europe's initiative as a milestone. "A European convention could become a leading example for a worldwide convention on this issue in the future," he said.
One of the leading figures in the euthanasia debate is Belgian oncologist Wim Distelmans. Because of the language barrier, he is an unfamiliar figure in the English-speaking world. But Canada’s National Post recently profiled him. it is essential reading for anyone who takes the issue seriously. Here are a few excerpts.
‘He said he has not performed a single euthanasia that he has questioned after the fact. “If I hesitate for any reason, I don’t perform euthanasia,” he said. “That is very simple. So for my peace of mind, there is no problem.”
‘His mind is perhaps also put at ease by the fact that he is co-chairman of the federal commission charged with reviewing — after the fact — whether euthanasia cases performed in Belgium adhered to the legal criteria. In 11 years of existence, all with Dr. Distelmans as co-chairman, the commission has not referred a single case to prosecutors for study. To critics, including one leading euthanasia advocate, Dr. Distelmans has too much influence. “He wants a little too much to be the Pope of euthanasia in Belgium, and that’s not a good thing,” said Marc Van Hoey, a physician and president of the Flemish death-with-dignity group known as RWS.
‘Chris Gastmans, a professor of medical ethics at the Catholic University of Leuven, said it is dangerous to have so much power concentrated in one person…
‘Dr. Distelmans countered that some of the control commission’s 16 members oppose euthanasia, and he is not in a position to dictate decisions. But the outcome of its last meeting is striking. Before meeting, members receive a thick stack of confidential forms providing the attending physician’s explanation for each euthanasia. Among the 172 cases up for review — just over a month’s worth — was the Sept. 30 death of Mr. Verhelst, the transsexual whose story was reported around the world and cited by critics as an example of euthanasia run amok. On the committee, no one batted an eye.
‘“The case of Nathan Verhelst, for instance, who met all the conditions of the law, we didn’t discuss about the case for one minute. It was just passed like that,” Dr. Distelmans said. “We already have a tradition of 10 years. Should Nathan’s case have been 10 years ago, maybe we would have discussed some time about the case. Now, it’s like [just] another one.”
‘As even the most extreme cases become commonplace, Dr. Distelmans seeks to push the envelope further. At the moment, “advanced declarations” requesting euthanasia can only be acted upon if a patient falls into an irreversible coma. Dr. Distelmans said people should be able to request euthanasia in the event that they develop dementia. He also argued that minors, currently forbidden from receiving euthanasia, should be eligible if they possess the intellectual maturity to make their own decisions. “A guy of 16 or 17, why should he have to wait until he’s 18 to be able to ask for euthanasia?” he asked.’
Voluntary sterilization has been legal since 1974 in the United States for women over 21. Why, then, is it so difficult for them to find a doctor who will do the procedure, asks Cristina Richie in the latest issue of the Hastings Center Report.
About one in five white women in the US will never bear a child, writes Richie, a theology graduate student at Boston College. This is the highest proportion in modern history. Of these, half, or 10% will be voluntarily childless. Life for them would be much easier without the stress and inconvenience of contraception. Yet many doctors refuse to sterilize them. Their position is that women may regret their decision in later years. “Yet regret is the competent woman's burden, not the doctor's. Very few providers of other permanent elective treatments like plastic surgery refuse treatment over fear of regret. Why should sterilization be different?” Richie asks.
Why do women want to remain childless? Richie says that there may be several reasons. They may have well-founded fears that pregnancy will damage their health. They may be carriers of a genetic disease. They may have vaguer personal reasons: the financial burden of children or revulsion at traditional maternal roles. One group, the GINKS (green inclinations, no kids), fear creating more agents of pollution and carbon emissions. Some dislike “unnecessary hard work”.
Why do doctors refuse? Normally because women are deemed too young or have no children. Many doctors are not trained in sterilisation techniques. Memories of forced eugenic sterilisations early in the 20th century have coloured some doctors’ attitudes. Oddly enough, she does not counter one common objection, that medicine is about restoring diseased organs to health, not about destroying healthy organs.
Ultimately, though, Richie argues, it is no business of the doctor what reasons a mentally-competent woman over the age of 21 might have. “American medicine should act as the law permits and good patient care requires, providing sterilization to women who are legally able to obtain it, regardless of parity.”
How should bioethicists engage with media? Gingerly, says Dr Syd Johnson, of Michigan Technological University, in an essay on the Impact Ethics blog. She contends that most doctors and scientists are not prepared to defend their research in the public square. Into this vacuum step media-savvy bioethicists.
However, too often they succumb to the temptation to offer crunchy sound-bites instead of thoughtful analysis. “Most of what passes for bioethics information for the general public is hysterical soundbites.” As a result the currency of bioethical discourse is devalued.
“The opportunity to spark meaningful discourse is lost when bioethicists, on the spot and in the spotlight, merely blurt out a laundry list of questions, or some unfortunate bit of conjecture that fuels the perception (perhaps not unfounded) that bioethicists are professional speculators, science fiction writers, handwringers about what hasn’t happened yet, and might never happen.”
In a week in which the US mourns the 50th anniversary of the death of John F. Kennedy, Dr Who fans are celebrating the 50th anniversary of the cult TV series. Tonight the BBC will screen a special episode, “The Day of the Doctor.” (See trailer here.)
There is a bioethical dimension to the Dr Who series, contends a University of Leicester academic, Dr Chris Willmott, especially in the characterisation one of Dr Who’s most fearsome enemies, the Cybermen.
These creatures arefor humans, but they have been altered to the point where they have few remaining organic parts, apart from their brains. They are emotionless, ruthless and evil. In a chapter in a book commemorating the anniversary, New Dimensions of Doctor Who, Dr Willmott says that the Cybermen offer an insight into the transhumanist movement:
“What we see portrayed is one of the classic dilemmas in modern bioethics - the tension between an intervention being a ‘therapy’ or an ‘enhancement’…
“The therapy/enhancement tension is particularly well examined in the 2006 two-parter ‘Rise of the Cybermen’ and ‘The Age of Steel’. On a parallel Earth, inventor John Lumic has been developing the Cybermen as a research tool as he sought a resolution to how he might survive his own degenerative illness. However the story finishes in a transhumanist’s nightmare when he is forcibly upgraded by his creations.
"Most people would agree that the various Cybermen storylines offer a pretty bleak image of the potential interaction between humans and Posthumans. There are, however, some philosophers who still argue that their ambition for pain-free immortality sits squarely with the goals of many humans. Over the years the details of how humans get turned into Cybermen have varied, but regardless of the mechanics of the conversion process, it has always been clear that the creatures within the shiny suits started out as people.”
This happens for a range of reasons, according to a recent article in the New England Journal of Medicine. Doctors are supposed to tell patients about their own mistakes, but not necessarily about those made by other doctors. Lead author Thomas Gallagher, of the University of Washington School of Medicine, and his colleagues explain why:
"… multiple barriers, including embarrassment, lack of confidence in one's disclosure skills, and mixed messages from institutions and malpractice insurers, make talking with patients about errors challenging. Several distinctive aspects of disclosing harmful errors involving colleagues intensify the difficulties.
"One challenge is determining what happened when a clinician was not directly involved in the event in question. He or she may have little firsthand knowledge about the event, and relevant information in the medical record may be lacking. Beyond this, potential errors exist on a broad spectrum ranging from clinical decisions that are 'not what I would have done' but are within the standard of care to blatant errors that might even suggest a problem of professional competence or proficiency."
Doctor may be reluctant to expose their colleagues to the possibility of litigation. They may fear resentment, anger or ostracism by colleagues. They may be burdened by "strong cultural norms around loyalty, solidarity, and 'tattling'". In a follow-up investigation, the investigative journalism website Pro Publica was told that most institutions only report errors when it appears that the harm will come to light in other ways.
Dr Gallagher's article concludes that "transparent disclosure of errors is a shared professional responsibility".
Palliative care is undermined by euthanasia and assisted suicide, according to many palliative care organisations. In Australia, where end-of-life issues are hotly debated, the peak palliative care body has joined the chorus of opposition.
The Australia and New Zealand Society for Palliative Medicine (ANZSPM) has released a new position statement on the practices, arguing that they are not a solution to patient suffering, and that legalising the procedures would take attention away from the real issue - a lack of access to palliative care.
In the document the ANZSPM emphasises, "There is a clear distinction between good care for the dying and active interventions instituted in order to deliberately end the life of a patient." Instead of providing VE or PAS, doctors should try to alleviate symptoms: "When requests for euthanasia or assisted suicide arise, particular attention should be given to gaining good symptom control, especially of those symptoms that research has highlighted may commonly be associated with a serious and sustained ‘desire for death’ (e.g. depressive disorders and poorly controlled pain)."
Out of a the ten point policy statement, three points stressed "the significant deficits in the provision of palliative care in Australia and New Zealand". ANZSPM called for new government "health reform programs", as well as increased carer support for respite care, so as "decrease the sense of burden for many patients at the end of life."
The debate over neuroscience in the courtroom continues. The latest word the discussion comes from Nita Farahany - a member of the Presidential Commission for the Study of Bioethical Issues. In a keynote lecture at the world's biggest neuroscience conference, Farahany forcefully criticised the use of flimsy evidence and misinterpreted studies in the courtroom. She called on judges to learn more about "the criminal mind" through neuroscience crash-courses.
In her address Farahany presented her own study of 1500 court cases involving neuroscience from 2005 to 2012. She found that the number of “neurolaw” cases rose from 100 to 250 a year.
"It seems like judges are particularly enamoured with the adolescent brain science," said Farahany. "Large pieces of their opinions are dedicated to citing the neuroscientific studies, talking about brain development, and using that as a justification for treating juveniles differently."
However, the most common use of neuroscience evidence is to argue for incompetence of the defendant. According to Farahany, many defendants claim that they weren't in a fit state to give a reliable statement to police subsequent to their alleged crime. They draw on evidence of brain damage or abnormalities to defend this claim. Harvard psychologist Joshua Buckholtz concurred. He said judges need to understand "what a scientific study is and what it says and what it doesn't say and can't say".