by Professor Dominic Wilkinson, @Neonatalethics
Professor of Medical Ethics, Consultant Neonatologist
Our society has good reason to provide special treatment to people with severe brain injuries and their families.
But our current “special treatment” for a group of the most severely affected people with brain injuries leads to devastating, agonising, protracted and totally preventable suffering.
* Note: this article was first published online at Quillette magazine.
Alice Dreger, the historian of science, sex researcher, activist, and author of a much-discussed book of last year, has recently called attention to the loss of ambivalence as an acceptable attitude in contemporary politics and beyond. “Once upon a time,” she writes, “we were allowed to feel ambivalent about people. We were allowed to say, ‘I like what they did here, but that bit over there doesn’t thrill me so much.’ Those days are gone. Today the rule is that if someone—a scientist, a writer, a broadcaster, a politician—does one thing we don’t like, they’re dead to us.”
I’m going to suggest that this development leads to another kind of loss: the loss of our ability to work together, or better, learn from each other, despite intense disagreement over certain issues. Whether it’s because our opponent hails from a different political party, or voted differently on a key referendum, or thinks about economics or gun control or immigration or social values—or whatever—in a way we struggle to comprehend, our collective habit of shouting at each other with fingers stuffed in our ears has reached a breaking point.
It’s time to bring ambivalence back. Continue reading
Associate Professor and Consultant Neonatologist Dominic Wilkinson (Oxford Uehiro Centre for Practical Ethics) argues that medical doctors should not always listen to their own conscience and that often they should do what the patient requests, even when this conflicts with their own values.
Asbestos kills more people per year than excessive sun exposure, yet it receives much less attention. Tom Douglas (Oxford Uehiro Centre for Practical Ethics) explains why asbestos is still a serious public health threat and what steps should be undertaken to reduce this threat. And yes, the snow in The Wizard of Oz was asbestos!
Science and medicine have done a lot for the world. Diseases have been eradicated, rockets have been sent to the moon, and convincing, causal explanations have been given for a whole range of formerly inscrutable phenomena. Notwithstanding recent concerns about sloppy research, small sample sizes, and challenges in replicating major findings—concerns I share and which I have written about at length — I still believe that the scientific method is the best available tool for getting at empirical truth. Or to put it a slightly different way (if I may paraphrase Winston Churchill’s famous remark about democracy): it is perhaps the worst tool, except for all the rest.
Scientists are people too
In other words, science is flawed. And scientists are people too. While it is true that most scientists — at least the ones I know and work with — are hell-bent on getting things right, they are not therefore immune from human foibles. If they want to keep their jobs, at least, they must contend with a perverse “publish or perish” incentive structure that tends to reward flashy findings and high-volume “productivity” over painstaking, reliable research. On top of that, they have reputations to defend, egos to protect, and grants to pursue. They get tired. They get overwhelmed. They don’t always check their references, or even read what they cite. They have cognitive and emotional limitations, not to mention biases, like everyone else.
At the same time, as the psychologist Gary Marcus has recently put it, “it is facile to dismiss science itself. The most careful scientists, and the best science journalists, realize that all science is provisional. There will always be things that we haven’t figured out yet, and even some that we get wrong.” But science is not just about conclusions, he argues, which are occasionally (or even frequently) incorrect. Instead, “It’s about a methodology for investigation, which includes, at its core, a relentless drive towards questioning that which came before.” You can both “love science,” he concludes, “and question it.”
I agree with Marcus. In fact, I agree with him so much that I would like to go a step further: if you love science, you had better question it, and question it well, so it can live up to its potential.
And it is with that in mind that I bring up the subject of bullshit.
The following is a transcript of an interview conducted by Jim Brown from Canadian Broad Casting Corporation’s program, The 180, on 3 December between Margaret Somerville and Julian Savulescu
Margaret Somerville is the Founding Director of the Centre for Medicine, Ethics and Law, the Samuel Gale Chair in Law and Professor in the Faculty of Medicine at McGill University, Montreal. She’s also the author of the new book ‘Bird on an Ethics Wire: Battles about Values in the Culture Wars’.
Julian Savulescu is Uehiro Chair in Practical Ethics and Director of the Oxford Uehiro Centre for Practical Ethics at the University of Oxford.
JB: Julian Savulescu, if I could begin with you. You argue that there is a moral imperative for us to pursue gene editing research. Briefly, why do you think it’s so important for us to embrace this technology?
JS: Genetic engineering has been around for about 30 years, widely used in medical research, and also in agriculture, but gene editing is a new version of genetic engineering that is highly accurate, specific, and is able to modify genomes without causing side effects or damage. It’s already been used to create malaria-fighting mosquitoes, drought-resistant wheat, and in other areas of agriculture. But what’s currently being proposed is the genetic modification of human embryos, and this has caused widespread resistance. I think there’s a moral obligation to do this kind of research in the following way. This could be used to create human embryos with very precise genetic modifications, to understand how we develop, why development goes wrong, why genetic disorders occur. It could also be used to create embryonic stem cells with precise changes that might make subsequent stem cells, cancer-fighting stem cells, or even stem cells that fight aging. It could also be used to create tissue with say, changes to understand the origins of Parkinson’s disease or Alzheimer’s disease and develop drugs for the treatment of those diseases. This is what I’d call therapeutic gene editing, and because it stands to benefit millions of people who die every year of painful and debilitating conditions, we actually have a moral imperative to do it. What we ought to show more concern for and perhaps ban, is what might be called reproductive gene editing – editing embryos to create live-born babies that are free of genetic disease or perhaps more resistant to common, late-onset diseases or even enhanced in various ways. If we’re concerned about those sorts of changes in society, we can ban reproductive gene editing, yet also engage in the very beneficial research using genetically modified human embryos to study disease.
JB: And Margaret Somerville, what concerns you about this technology?
MS: Well, I’m interested in the division that Julian makes between the reproductive gene editing and what he calls the therapeutic gene editing. I’m a little surprised that he might not agree with the reproductive gene editing – that is, you would alter the embryo’s germline, so that it wouldn’t be only altered for that embryo, but all the descendants of that embryo would be changed in the same way. And up until – actually, up until this year, there was almost universal agreement, including in some important international documents, that that was wrong, that was ethically wrong, it was a line that we must never step across, that humans have a right to come into existence with their own unique genetic heritage and other humans have no right to alter them, to design them. Julian uses the term genetic engineering – to make them, to manufacture them. Where we would disagree completely is with the setting up of what can be called human embryo manufacturing plants, that is, you would create human embryos in order to use them to make products that would benefit other people, you would use them for experimentation, for research. And Julian’s right, we could do a great deal of good doing that – but there’s a huge danger in looking only at the good that we do. And what we’re doing there is we’re using human life as a product. We’re transmitting human life with the intention of killing it by using it as a product, and I believe that’s wrong. I think that human embryos have moral status that deserves respect, which means they shouldn’t be treated just as products.
Scott Alexander has a thoughtful piece about who gets to set the default in disagreements about what is reasonable. He describes a couple therapy session where one member is bored with his sex life and goes kinky clubbing, to the anger of his strongly monogamous partner. Yet both want to stay together at least for the sake of the kids. Assuming the answer is an either-or situation where one has to give up on their demand (likely not the ideal response in an actual couple therapy setting), the issue seems to boil down to who has the unreasonable demand.
It resonated with another article I came across in my news flow today: What It’s Like to Be Chemically Castrated. This article is an interview with a man who wanted to be chemically castrated in order to manage his sex addiction and save his 45-year marriage. Is this an unreasonable intervention?
Written by Jonathan Pugh
This is an unedited version of a paper by Dr Pugh which was originally published on The Conversation:
please see here to read the original article
In a startling development in ‘gene-drive’ technology, a team of researchers at the University of California have succeeded in creating hundreds of genetically modified mosquitoes that are incapable of spreading the malaria parasite to humans, and which could potentially spread this trait rapidly throughout mosquito populations in the wild. This success has the potential to be translated into a huge global health benefit. Although global malarial deaths have been in decline over the past decade or so, WHO estimates that malaria has been responsible for over 400’000 deaths this year alone. The Anopheles genus of mosquito acts as the vector for malaria, as infected Anopheles mosquitoes transmit Plasmodium parasites to humans via their bites, and it is these parasites that cause malaria. Continue reading
There is a long overdue crisis of confidence in the biological and medical sciences. It would be nice – though perhaps rather ambitious – to think that it could transmute into a culture of humility.
A recent comment in Nature observes that: ‘An unpublished 2015 survey by the American Society for Cell Biology found that more than two-thirds of respondents had on at least one occasion been unable to reproduce published results. Biomedical researchers from drug companies have reported that one-quarter or fewer of high-profile papers are reproducible.’
Reproducibility of results is one of the girders underpinning conventional science. The Nature article acknowledges this: it is accompanied by a cartoon showing the crumbling edifice of ‘Robust Science.’
As the unwarranted confidence of scientists teeters and falls, what will – and what should – happen to bioethics?