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".
“He did not care if she was heartless, vicious and vulgar, stupid and grasping, he loved her. He would rather have misery with one than happiness with the other,” wrote Somerset Maugham in his famous 1915 novel Of Human Bondage. But what if the protagonist (clearly Maugham himself) could have taken a pill to rid him of his helpless passion? Would he? Should he? Would we have a novel which has been made into a film three times? Escaping from relationships is one of the issues that four authors, all from Oxford, including Julian Savulescu, discuss in a lead article in the American Journal of Bioethics.
Even though a love sterilisation pill is still fanciful, there have been some promising developments and the article provoked a good deal of discussion. A pill could be useful in a number of situations: allowing someone to escape an abusive relationship, adulterous love, unrequited love leading to suicidal thoughts, incestuous love (not that all incest is bad, they hasten to add), paedophilia, or love for a cult leader. They conclude that: “the individual, voluntary use of anti-love biotechnology (under the right sort of conditions) could be justified or even morally required. That is, in some cases, to deny its use would be inhumane.”
To the authors, a woman who wants to break with a beloved partner who has become violent and abusive is the clearest candidate for the break-up pill. This helps them to set four conditions for its use:
The love is clearly harmful;
The person wants to use the pill;
The pill would help a person follow higher order goals instead of lower order feelings;
There is no other alternative.
There are some contentious cases. What about homosexuality? In a sense, “reparative therapy” is a primitive break-up pill. The authors acknowledge that a pill could be misused, but they make no exception for homosexual feelings. We must “also respect the autonomous decision of each individual to engage in her own process of “becoming” who and what she seeks to be, in accordance with her personal goals and values. Therefore, we must conclude that even in the controversial case of homosexual love, it may be possible to justify the use of anti-love biotechnology in certain cases.”
Other academics commented on the article. Some of them pitched interesting scenarios if such a drug became available. Should soldiers take it to avoid developing friendly attitudes toward an enemy? Would we be poorer human beings if we no longer had to experience romantic heartache? Song writers might lose one of their most enduring themes. Pills could be used without consent to promote one-night stands – or to turn an affectionate boss against an employee. Parents could use a pill to quench a teen romance…. “The imminent development and availability of pro-love and anti-love agents will present a serious risk for unethical attempts to surreptitiously manipulate emotional and romantic feelings,” write two academics from Arizona State University.
There’s a great script for a film in here somewhere. But will it be Of Human Bondage IV or The Hangover Part IV?
Despite complaints from experts, more and more IVF clinics are using intra-cytoplasmic sperm injection (ICSI). Lisa Jardine, the outgoing head of the Human Fertilisation and Embryology Authority (HFEA), complained earlier this month that some clinics are using ICSI only because it is easier rather than because it is in the best interests of patients.
"We believe it is being used far too widely because it is procedurally easy," The Independent reported. "The scientists who advocate it already know that a boy born through ICSI is likely to have a low sperm count. So it is a little bit worrying that it is being rolled out so widely." Studies have shown that ICSI leads to more health problems for the children. It is also more expensive.
Writing in BioNews, Steven Fleming, of the University of Sydney, says in exasperation that the incidence of male factor infertility is only 30 to 40%, but that ICSI is being used to treat 53 to 68% of infertile couples in Australia, New Zealand and the UK. Presumably doctors believe that ICSI will result in higher pregnancy rates, but there is no convincing evidence for this.
"We know that babies born from ICSI have increased risk of some problems later in life and infertility is one of them," Allan Pacey, chairman of the British Fertility Society, told The Independent. "For these reasons we should be prudent over the use of ICSI. So let's use ICSI when it's needed, and not as some kind of guarantee against fertilisation failure, which is how some clinics approach it."
Some American politicians have discovered how to reconcile punishment and compassion: allow prisoners on death row to donate their organs. In Oklahoma Rep. Joe Dorman has suggested that extending someone else's life by becoming an organ donor is a way for criminals to redeem themselves. "It's Christian principles that if you can offer someone a chance of redemption, you should offer that opportunity," he said.
And in Ohio, Governor John Kasich deferred the execution of 40-year-old Ronald Phillips, who killed a 3-year-old 20 years ago, to see if it would be possible for him to donate his vital organs. “I realize this is a bit of uncharted territory for Ohio, but if another life can be saved by his willingness to donate his organs and tissues, then we should allow for that to happen,” he said.
Bioethicists derided the idea as impractical and immoral. Organs need to be fresh and functioning if a transplant is to be successful, but only execution with a bullet in the brain or the guillotine can guarantee this. Neither are likely to be used in the US. The prison would also have to build facilities to keep the prisoner-donor on life support until he (or she) is executed. " Are we ever capable of laying a stupid idea to rest in America?" asked bioethicist Art Caplan. "Apparently not."
As for the ethics, the American Medical Association does not condone doctor participation in executions in any capacity, much less organ transplants. And it would clearly be unethical for surgeons to remove vital organs from an otherwise healthy person. "It's a very, very dangerous topic from an ethical standpoint," a spokesman for the Oklahoma organ registry commented. "It just frames the whole thing wrong. This turns it into sort of a redemption kind of topic. That's not what donations are about."
A spirited debate arose in the US last week over the withdrawal of life support from a recently paralysed hunter. Tim Bowers, a 32-year-old newlywed from Indiana, suffered massive spinal injuries earlier this month after he fell from a tree during a deer hunting expedition. Bowers woke up in a hospital hours later, paralysed from the neck down and reliant on a breathing tube. After being asked by his family, a despairing Bowers asked doctors to remove his breathing tube. He died a few hours later.
Many bioethicists have argued Bowers was unfit to make the decision so soon after sustaining his injury. Arthur Caplan of NYU said, "initially after a terrible injury or a mutilating injury or a terrible burn, pain and disfigurement, everybody is like, 'I can't go on.' Almost a hundred percent say, 'I don't want to live like this." He suggested a cooling off period of a few weeks.
Bower’s sister said that Tim had once said he would never like to live his life in a wheelchair.
Outspoken disabilities activist Robert Anderson dismissed this “advanced directive”. "They never gave this young man a chance, he was not in the right stage of mind to make that type of decision. I always said I'd never want to live my life in a wheelchair either. Than I dove into shallow water at age 21 and broke my neck rendering me a quadriplegic. Life sure isn't easy but its definitely worth living."
The monolithic concept of autonomy may be fissuring, judging from recent articles in the bioethics journals. In debates over key issues at the beginning and end of life, autonomy has been an important criterion, often the only one, for settling problems. But as academics bat the ball back and forth, it seems that it is beginning to fray.
For example, writing in the Journal of Medicine and Philosophy, three Swedish academics contend that autonomy actually has three elements: competence, the ability to carry out plans, and authenticity. Competence, or decision-making ability, implies a capacity for making personal plans. But one must also possess efficiency, or the ability to put them into effect without external or internal constraints. Finally, truly autonomous decisions must be consistent with one’s own higher-order desires.
The question posed in this article is whether paternalism can be justified in order to enhance a patient’s “authenticity”. For instance, a person who wants to commit suicide immediately after a crippling accident could be restrained in order (paradoxically) to enhance his autonomy because later on he would want to live. A drug addict could be forced to take treatment to recover his true self.
The authors conclude that paternalism, except in a “weak” form is normally not justifiable. However, in an article in the Journal of Medical Ethics, Felicitas Kraemer, of Eindhoven University of Technology in the Netherlands, asks whether the concept of “authenticity” may be more important than autonomy. The focus of her interest is deep brain stimulation for Parkinson’s disease, which can restore control in a patient’s life but can also have bad psychosocial side effects.
She cites the example of a Dutch man whom DBS rescued from deep depression and physical and mental suffering. However, the DBS also made him so manic that he had been committed to a psychiatric hospital. There doctors gave him a choice: he could be “normal” and depressed, with the DBS switched off, but free. Or he could keep it switched on, making him manic, independent and happy – but institutionalised. He chose the latter.
“To be both autonomous and authentic was not possible for him,” comments Kraemer. “In the authentic state, he is no longer able to make any mentally competent, autonomous decisions in the future, and vice versa, when being mentally competent, he does not feel authentic. In this light, one could redescribe his dilemma as a dilemma between autonomy and authenticity.”
There seems to be a growing realisation among bioethicists that autonomy is not as simple as it seems. Perhaps it depends on what element is emphasised. This is not just an academic question, as issues like voluntary and involuntary euthanasia depend on it.