By Daniel K. Sokol
Daniel Sokol, PhD, is a bioethicist and lawyer at 12 King’s Bench Walk, London. He has sat on several ethics committees, including the UK’s Ministry of Defence’s Research Ethics Committee.
In a recent Opinion piece in the Boston Globe, Professor Steven Pinker made the surprising suggestion that the primary moral goal of today’s bioethics should be to “get out of the way”. “A truly ethical bioethics”, he argued, “should not bog down research in red tape, moratoria or threats of prosecution”.
This bold assertion no doubt echoes the thoughts of many scientists whose research requires the approval of an ethics review committee before springing to life. As a PhD student many years ago, I experienced first hand the frustrations of the tedious review process. I spent hours drafting the protocol, revisions and responding to the Committee’s questions, time I would have preferred to spend conducting research. While a popular sentiment, getting out of the way is not the goal of bioethics.
The goal of bioethics is to allow potentially beneficial research while ensuring that the risk of harm to participants and others is proportionate, reduced to the lowest practicable level, and within morally acceptable limits. The risk of harm can never be eliminated, but it can usually be reduced with minimal effort or cost. It may be as simple as testing a new piece of equipment one more time in a laboratory before attaching it to a human for testing.
Many people are suspicious about being manipulated in their emotions, thoughts or behaviour by external influences, may those be drugs or advertising. However, it seems that – unbeknown to most of us – within our own bodies exist a considerable number of foreign entities. These entities can change our psychology to a surprisingly large degree. And they pursue their own interests – which do not necessarily coincide with ours.
Last week I attended a conference on the science of consciousness in Helsinki. While there, I attended a very interesting session on the Minimally Conscious State (MCS). This is a state that follows severe brain damage. Those diagnosed as MCS are thought to have some kind of conscious mental life, unlike those in Vegetative State. If that is right – so say many bioethicists and scientists – then the moral implications are profound. But what kind of conscious mental life is a minimally conscious mental life? What kind of evidence can we muster for an answer to this question? And what is the moral significance of whatever answer we favor? One takeaway from the session (for me, at least): it’s complicated.
By Hannah Maslen, Jonathan Pugh and Julian Savulescu
According to the NHS, the number of hospital admissions across the UK for teenagers with eating disorders has nearly doubled in the last three years. In a previous post, we discussed some ethical issues relating to the use of deep brain stimulation (DBS) to treat anorexia nervosa (AN). Although the trials of this potential treatment are still in very early, investigational stages (and may not necessarily become an approved treatment), the invasive nature of the intervention and the vulnerability of the potential patients are such that anticipatory ethical analysis is warranted. In this post, we show how different possible mechanisms of intervention raise different questions for philosophers to address. The prospect of intervening directly in the brain prompts exploration of the relationships between a patient’s various mental phenomena, autonomy and identity. Continue reading
Hannah Maslen and Julian Savulescu
In a pioneering new procedure, deep brain stimulation is being trialed as a treatment for the eating disorder anorexia nervosa. Neurosurgeons at the John Radcliffe Hospital in Oxford implanted electrodes into the nucleus accumbens of a woman suffering with anorexia to stimulate the part of the brain involved in finding food rewarding. Whilst reports emphasize that this treatment is ‘highly experimental’ and would ‘only be for those who have failed all other treatments for anorexia’, there appeared to be tentative optimism surrounding the potential efficacy of the procedure: the woman who had undergone the surgery was reportedly ‘doing well’ and had shown ‘a response to the treatment’.
It goes without saying that successful treatments for otherwise intractable conditions are a good thing and are to be welcomed. Indeed, a woman who had undergone similar treatment at a hospital in Canada is quoted as saying ‘it has turned my life around. I am now at a healthy weight.’ However, the invasive nature of the procedure and the complexity of the psychological, biological and social dimensions of anorexia should prompt us to carefully consider the ethical issues involved in offering, encouraging and performing such interventions. We here outline relevant considerations pertaining to obtaining valid consent from patients, and underscore the cautious approach that should be taken when directly modifying food-related desires in a complex disorder involving interrelated social, psychological and biological factors. Continue reading
The discussion that the scientists in Nature and Science called for should remain in realism, not go on to superhumans
Just over a week ago, prominent scientists in Nature and Science called for a ban for DNA modification in human embryos. This is because the scientists presume that now it actually would be possible to alter the genome in a human embryo in order to treat genetic diseases. Consequently, this would result in modified DNA in germ cells that would be inherited to future generations. The scientists wish to have a full ethical, legal, and public discussion before any germ-line modifications will be made. Furthermore, issues of safety are of importance.
The scientists’ statement is of utmost importance and hopefully this ethical, legal, and public discussion will emerge. However, the discussion on germ-line DNA modification is at danger if the debate will be taken to the level of science fictional superhumans, as already has happen. Not only can such discussion cause unnecessary public worry, it also leads the deliberation away from the actual and urgent questions.
Guest Post by Bill Gardner @Bill_Gardner
Many researchers and physicians assert that randomized clinical trials (RCTs) are the “gold standard” for evidence about what works in medicine. But many others have pointed to both strengths and limitations in RCTs (see, for example, Austin Frakt’s comments on Angus Deaton here). Nancy Cartwright is a major philosopher of science. In this Lancet paper she provides insights into why RCTs are so highly valued and also why they are by themselves insufficient to answer the most important questions in medicine.
Scientific illiteracy and “anti-science”-beliefs are a common topic in scientific and academic communities. For example, how most (or many) Americans do not understand the difference between DNA and a genetically modified food. Another known topic is, for example, skepticism towards vaccinations. In this editorial of the biggest Finnish newspaper, the author predicts that the new rise of the Middle Ages is upon us if people refuse to trust scientific results, and emotions continue to rule out reason.
While excessive skepticism and building conspiracy theories against science might, by and large, be irrational and, most importantly, harmful, the phenomenon deserves a deeper consideration than accusations of irrationality, emotionality, or stupidity.
An important reason for the need of deeper elaboration is in the following controversy: on the one hand, the scientific community, rightly, calls for trust to scientific work. Enormous accomplishments of biomedical science are a great argument for trusting science and its capability to improve life. However, on the other hand, there is strong evidence that the scientific community is not always trustworthy. Medical companies, the paramount founder of medical research, have faced many accusations of scientific misconduct and fraud (how funding affects outcomes – see also this and this -, ghostwriting, corruption). Furthermore, there is discussion about how FDA reacts to questionable and even unreliable scientific papers. It is claimed that despite the knowledge about scientific misconduct, the FDA does little to report the questionable results to physicians and medical researchers. And there is at least much evidence to discuss good practices concerning e.g. Monsanto and how things work with GMO agriculture. “What companies do is not the problem of science” is a legitimate sentence when discussing only the mere possible existence of some biomedical or GMO innovation, but when brought to a concrete level, the real-life questions should be taken back to the issue. Continue reading
Epigenetics and Blaming Pregnant Women: Hasty Conclusions, Control, and Simplified Burden of Responsibility
In a recent (13.8.2014) article in Nature , Sarah S. Richardson and colleagues maintain that careless discussion of epigenetic research on how early life affects health across generations could harm women.
Authors discuss the extensive history of placing the burden of responsibility of a child’s health on the lifestyle of the pregnant mother – and the means for controlling women’s behavior. Authors describe how, for example, evidence of any fetal harm easily lead to zero-tolerance regulatory frameworks and severe informal and formal consequences (e.g. social condemnation for an occasional sip of alcohol despite the ambiguous evidence that very moderate and occasional drinking should harm the fetus), and how the “lack of emotional warmth” of the “refrigerator mothers ” was considered to be the reason to child autism as late as the 1970s. Going even more backwards in the history, various defects were attributed, for example, to the company the mother kept during pregnancy.
It is a curious feature of the late 20th and early 21st centuries that the media regales readers and viewers almost daily with exciting details of breakthroughs in medical science: new cures, reversals of previous certainties about old remedies (and then, often enough, later reversals of the reversals), astonishing information about our brains and numerous other organs, apparently dramatic discoveries about free will and ethical thinking. Much of this is indeed attributable to the rapid rate of the expansion of contemporary scientific understanding which we should not want to underestimate, but it is also sometimes the result of the media’s excitability and search for sensation, combined with the impressive self-promotional skills of practitioners of the medical sciences. This latter factor means that reported “breakthroughs” are often no more than confident early steps on a promising but uncertain path, and when they lead nowhere this sad news tends not to see the light of day. And then there are the cases of outright fraud or incompetence, such as the South Korean scientist Hwang Woo-suk’s initially much-proclaimed breakthroughs in the early 2000s in stem cell research that were shown to be faked.
So a certain reserve about reported breakthroughs is in order, but a recent case is worth philosophical scrutiny even if its claims turn out to be less valid than they seem. This was a report in The Mail Online, Science and Technology section that was headlined “Could Pill wipe out bad memories? Drug used to treat multiple sclerosis found to help us forget experiences that caused us pain.” But it turns out that the drug has only been tested for memory erasure of pain in mice, and then only of a specific type of pain associated with mild electric shock. The Mail article jumps rapidly from this modest beginning to claim that the experiment “offers hope of a drug that could eradicate memories of traumatic events from years ago and help patients overcome phobias, eating disorders and even sexual hang-ups.” For none of this “hope” is there an iota of evidence in the scientific study and one of the scientists involved in the study at the Commonwealth University of Virginia, Dr Sarah Spiegel, showing appropriate modesty, said of the drug concerned: ‘Fingolimod, a Food and Drug Administration approved drug for treatment of multiple sclerosis, has beneficial effects in the central nervous system that are not yet well understood.” More ambitiously she added: “Fingolimod deserves consideration as an adjuvant therapy for post traumatic stress disorder and other anxiety disorders.”