Skip to content

Research Ethics

What has Facebook (with some psychologists) done?

In my academic and musty corner of the universe, there has been a lot of talk in the past few days about this publication in the prestigious Proceedings of the National Academy of Sciences. Researchers tweaked a Facebook algorithm such that Facebook users would see a higher proportion of posts with negative or positive emotional content in their feed. They wanted to know whether a user seeing a different proportion would influence the emotional content content of that user’s posts in a positive or negative direction. The news: it did (a little bit).

People are less interested in that, however, and more interested in whether the researchers acted unethically. The BBC has a short round-up of some tweets here, and among other things the Guardian quotes Labour MP Jim Sheridan calling for an investigation here. Slate tagged its story on the issue with the headline ‘Facebook’s Unethical Experiment’ – a headline that shifts blame away from researchers and entirely to Facebook. There are many more news stories on this out by now: you get the picture.Read More »What has Facebook (with some psychologists) done?

When the poison is the antidote: risky disaster research

A recent report by Lipsitch and Galvani warns that some virus experiments risk unleashing global pandemic. In particular, there are the controversial “gain of function” experiments seeking to test how likely bird flu is to go from a form that cannot be transmitted between humans to a form that can – by trying to create such a form. But one can also consider geoengineering experiments: while current experiments are very small-scale and might at most have local effects, any serious attempt to test climate engineering will have to influence the climate measurably, worldwide. When is it acceptable to do research that threatens to cause the disaster it seeks to limit?

Read More »When the poison is the antidote: risky disaster research

Medical ethics are ridiculous

In a blistering letter in the current issue of the British Medical Journal, Miran Epstein identifies some of the factors we should consider in assessing the claims of so-called ‘evidence-based medicine’.[1] Nobody rationally disagrees with the suggestion that medicine should have an evidence base, and everybody should agree that in order for medicine to be based on reliable evidence, it should be free of the following ‘polluters’:

  •  financial conflicts of interest
  •  inadequately rigorous selection criteria, outcome measures and criteria of statistical significance
  • the practice of testing products against placebo or no treatment (rather than current treatment), and then shouting ‘Eureka!’
  • recruiting subjects using financial incentives that introduce outcome bias
  • marketing campaigns masquerading as research

Closing down comments

Popular Science  has decided they will no longer permit comments on their new articles.  If you are a ‘vexing commenter’, a ‘shrill boorish specimen’, rather than a ‘delightful, thought-provoking commenter’, it now turns out you were never welcome. Of course, they have a perfect right to close their comments: it is their website. Their reasons for doing so, however, show a distressing lack of respect for the value of free speech and free opinion.

It is true that some people are shrill, boorish and vexing, but some people are merely called that because they are saying things others do not wish to hear. Climate skeptics are frequently dismissed in these terms. Very good, you might say. But so were abolitionists, feminists and gay rights activists. This is that well known irregular verb, I am forthright, you are argumentative, he is boorish, she is shrill, we are reality based truth speakers, ye (you all) are clamorous and they are vexatious liars.

Read More »Closing down comments

Ethics and the Limits of the Randomized Controlled Trial: Time to Enhance Access to Novel Therapies in Lethal Diseases?

Parts of this blog are drawn from ‘Improving access to medicines: empowering patients in the quest to improve treatment for rare lethal diseases’, a forthcoming paper  in the Journal of Medical Ethics

Jenn McNary witnesses the miracles that modern medicine can produce every day when she sees her son Max, once increasingly reliant on a wheelchair due to his Duchenne muscular dystrophy, now able to walk, run and jump, the progression of his deadly disease apparently halted due to his enrolment in a clinical trial of a new drug, Eteplirsen.

Tragically, she also witnesses the suffering of her son Austin, who has the same genetic condition, denied the drug as his disease progresses and left no longer able to leave his wheelchair unaided. Like most with Duchenne muscular dystrophy, he is expected to die in his early twenties.

Eteplirsen works by rewriting some of the genetic code that is linked to the disease. If Max’s improvement is repeated in other patients in the trial who are receiving the drug and not the placebo, it is likely that in a few years this treatment will be revolutionizing the prognosis for Duchenne sufferers and offering hope to many of the 1 in 3600 boys who are affected by the disease.

In the meantime, patients like Austin are denied treatment, on the grounds that the drugs have not been tested- in order to protect him from unknown side effects and complications, and to test its efficacy scientifically. Yet the alternative for Austin is continuing degenerative disease, and in a few years, death.

Les Halpin, founder of Access to Medicine, and himself a motor neuron disease sufferer has argued that for those with life threatening and rare illnesses, current drug approval procedures do not work. He argues in our forthcoming paper that “for such individuals, the “risk-return ratio” is different compared to patients with more benign conditions and drug regulations should be adapted to allow such people the opportunity to try out new combinations of drugs”. He has argued for greater use of new media to track patient progress, and cites the use of the website ‘Patients Like Me’ by MND patients to track their progress on lithium treatment.

Read More »Ethics and the Limits of the Randomized Controlled Trial: Time to Enhance Access to Novel Therapies in Lethal Diseases?

Why it matters whether you believe in free will

by Rebecca Roache

Follow Rebecca on Twitter

Scientific discoveries about how our behaviour is causally influenced often prompt the question of whether we have free will (for a general discussion, see here). This month, for example, the psychologist and criminologist Adrian Raine has been promoting his new book, The Anatomy of Violence, in which he argues that there are neuroscientific explanations of the behaviour of violent criminals. He argues that these explanations might be taken into account during sentencing, since they show that such criminals cannot control their violent behaviour to the same extent that (relatively) non-violent people can, and therefore that these criminals have reduced moral responsibility for their crimes. Our criminal justice system, along with our conceptions of praise and blame, and moral responsibility more generally, all presuppose that we have free will. If science can reveal it to be an illusion, some of the most fundamental features of our society are undermined.

The questions of exactly what free will is, and whether and how it can accommodate scientific discoveries about the causes of our behaviour, are primarily theoretical philosophical questions. Questions of theoretical philosophy—for example, those relating to metaphysics, epistemology, and philosophy of mind and language—are rarely viewed as highly relevant to people’s day-to-day lives (unlike questions of practical philosophy, such as those relating to ethics and morality). However, it turns out that the beliefs that people hold about free will are relevant. In the last five years, empirical evidence has linked reduced belief in free will with an increased willingness to cheat,1 increased aggression and reduced helpfulness,2 and reduced job performance.3 Even the way that the brain prepares for action differs depending on whether or not one believes in free will.4 If the results of these studies apply at a societal level, we should be very concerned about promoting the view that we do not have free will. But what can we do about it?Read More »Why it matters whether you believe in free will

The Bad Seed: Facts and Values in the Study of Childhood Antisocial Behaviour

Podcast of Uehiro Seminar given by Gwen Adshead ‘The Bad Seed’ was a popular 1954 novel in which a well brought up young girl begins to manifest behaviour characteristic of a criminal psychopath. As the plot develops, the girl’s mother discovers that her own mother was a serial killer who was executed when she was herself a… Read More »The Bad Seed: Facts and Values in the Study of Childhood Antisocial Behaviour

Focus on the important things: reforming medical trials

As Ben Goldacre reveals, the status quo in drug testing is nothing less than a scandal. Pharmaceutical companies are suppressing and blocking information, perfectly legally, that is causing adults and children to die. Reforming the system wouldn’t be too hard – a registry for all drug trials, before they begin, should be enough to get rid of… Read More »Focus on the important things: reforming medical trials

Spin city: why improving collective epistemology matters

The gene for internet addiction has been found! Well, actually it turns out that 27% of internet addicts have the genetic variant, compared to 17% of non-addicts. The Encode project has overturned the theory of ‘junk DNA‘! Well, actually we already knew that that DNA was doing things long before, and the definition of ‘function’ used is iffy. Alzheimer’s disease is a new ‘type 3 diabetes‘! Except that no diabetes researchers believe it. Sensationalist reporting of science is everywhere, distorting public understanding of what science has discovered and its relative importance. If media ought to try to give a full picture of the situation, they seem to be failing.

But before we start blaming science journalists, maybe we should look sharply at the scientists. A new study shows that 47% of press releases about controlled trials contained spin, emphasizing the beneficial effect of the experimental treatment. This carried over to subsequent news stories, often copying the original spin. Maybe we could try blaming university press officers, but the study found spin in 41% of the abstracts of the papers too, typically overestimating the benefit of the intervention or downplaying risks. The only way of actually finding out the real story is to read the content of the paper, something requiring a bit of skill – and quite often paying for access.

Who to blame, and what to do about it?

Read More »Spin city: why improving collective epistemology matters

H5N1: Why Open the Stable Door?

Professor Paul Keim, who chairs the US National Science Advisory Board for Biosecurity, recently recommended the censoring of research that described the mutations which led to the transformation of the H5N1 bird-flu virus into a form that can be transmitted between humans through droplets in breath (in ferrets, the number of mutations required is frighteningly… Read More »H5N1: Why Open the Stable Door?