Health

The ethics of treatment for Charlie Gard: resources for students/media

by Dominic Wilkinson and Julian Savulescu

 

The case of Charlie Gard has reached its sad conclusion. However, it continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available. (*Updated 10/11/17) Continue reading

The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem. Continue reading

Are Incentives Corrupting? The Case of Paying People to be Healthy.

Written by Dr Rebecca Brown

Financial incentives are commonplace in everyday life. As tools of states, corporations and individuals, they enable the ‘tweaking’ of motivations in ways more desirable to the incentiviser. A parent may pay her child £1 to practice the piano for an hour; a café offers a free coffee for every nine the customer buys; governments offer tax breaks for homeowners who make their houses more energy efficient. Most people, most of the time, would probably find the use of financial incentives unobjectionable.

More recently, incentives have been proposed as a means of promoting health. The thinking goes: many diseases people currently suffer from, and are likely to suffer from in the future, are largely the result of behavioural factors (i.e. ‘lifestyles’). Certain behaviours, such as eating energy dense diets, taking little exercise, smoking and drinking large amounts of alcohol, increase the risk that someone will suffer from diseases like cancer, heart disease, lung disease and type II diabetes. These diseases are very unpleasant – sometimes fatal – for those who suffer from them, their friends and family. They also create economic harms, requiring healthcare resources to be directed towards caring for those who are sick and result in reduced productivity through lost working hours. For instance,the annual cost to the economy of obesity-related disease is variously estimated as £2.47 billion£5.1 billion and a whopping $73 billion (around £56.5 billion), depending on what factors are taken into account and how these are calculated. Since incentives are generally seen as useful tools for influencing people’s behaviour, why not use them to change health-related behaviours? Why not simply pay people to be healthy? Continue reading

Damages and communitarianism

By Charles Foster

The Lord Chancellor recently announced that the discount rate under the Damages Act 1996 would be decreased from 2.5% to minus 0.75%. This sounds dull. In fact it is financially tectonic, and raises some important ethical questions.

In the law of tort, damages are intended to put a claimant in the position that she would have been in had the tort not occurred. A claimant who, as result of negligence on the part of a defendant, suffers personal injury, will be entitled to, inter alia, damages representing future loss of earnings, the future cost of care and, often, private medical and other treatment.

Where damages are awarded as a lump sum, there is a risk of over-compensating a claimant. Suppose that the claimant is 10 years old at the time of the award, and will live for 70 years, and the future care costs are £1000 a year for life. Should the sum awarded be £1000 x 70 years = £70,000? (70, here, is what lawyers call the ‘multiplier’). It depends on the assumption one makes about what the claimant will do with the lump sum. If she invests it in equities that give her (say) an annual 5% return, £70,000 would over-compensate her.

In the case of Wells v Wells1, the House of Lords decided that, to avoid the risk of under-compensation, claimants should be treated as risk-averse investors. It should be assumed, said the House, that the discount rate should be fixed by reference to the return on index-linked gilts – Government securities. The rate was 2.5% from 2001 until February of this year. The reasons for the change to minus 0.75% are hereContinue reading

Guest Post: Mind the accountability gap: On the ethics of shared autonomy between humans and intelligent medical devices

Guest Post by Philipp Kellmeyer

Imagine you had epilepsy and, despite taking a daily cocktail of several anti-epileptic drugs, still suffered several seizures per week, some minor, some resulting in bruises and other injuries. The source of your epileptic seizures lies in a brain region that is important for language. Therefore, your neurologist told you, epilepsy surgery – removing brain tissue that has been identified as the source of seizures in continuous monitoring with intracranial electroencephalography (iEEG) – is not viable in your case because it would lead to permanent damage to your language ability.

There is however, says your neurologist, an innovative clinical trial under way that might reduce the frequency and severity of your seizures. In this trial, a new device is implanted in your head that contains an electrode array for recording your brain activity directly from the brain surface and for applying small electric shocks to interrupt an impending seizure.

The electrode array connects wirelessly to a small computer that analyses the information from the electrodes to assess your seizure risk at any given moment in order to decide when to administer an electric shock. The neurologist informs you that trials with similar devices have achieved a reduction in the frequency of severe seizures in 50% of patients so that there would be a good chance that you benefit from taking part in the trial.

Now, imagine you decided to participate in the trial and it turns out that the device comes with two options: In one setting, you get no feedback on your current seizure risk by the device and the decision when to administer an electric shock to prevent an impending seizure is taken solely by the device.

This keeps you completely out of the loop in terms of being able to modify your behaviour according to your seizure risk and – in a sense – relegates some autonomy of decision-making to the intelligent medical device inside your head.

In the other setting, the system comes with a “traffic light” that signals your current risk level for a seizure, with green indicating a low, yellow a medium, and red a high probability of a seizure. In case of an evolving seizure, the device may additionally warn you with an alarm tone. In this scenario, you are kept in the loop and you retain your capacity to modify your behavior accordingly, for example to step from a ladder or stop riding a bike when you are “in the red.”

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In praise of ambivalence—“young” feminism, gender identity, and free speech

By Brian D. Earp (@briandavidearp)

* Note: this article was first published online at Quillette magazine.

Introduction

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

Guest Post: Scientists aren’t always the best people to evaluate the risks of scientific research

Written by Simon Beard, Research Associate at the Center for the Study of Existential Risk, University of Cambridge

How can we study the pathogens that will be responsible for future global pandemics before they have happened? One way is to find likely candidates currently in the wild and genetically engineer them so that they gain the traits that will be necessary for them to cause a global pandemic.

Such ‘Gain of Function’ research that produces ‘Potential Pandemic Pathogens’ (GOF-PPP for short) is highly controversial. Following some initial trails looking at what kinds of mutations were needed to make avian influenza transmissible in ferrets, a moratorium has been imposed on further research whilst the risks and benefits associated with it are investigated. Continue reading

Video Series: Tom Douglas on Asbestos, a Serious Public Health Threat

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!

Alcohol, pregnancy, experts, and evidence

In the United States, the Centers for Disease Control recently released a new advisory regarding the use of alcohol during or around pregnancy. According to the CDC, any drinking by women ‘who are pregnant or might be pregnant’ constitutes ‘drinking too much.’ The primary reason for the label is the risk of a fetus developing Fetal Alcohol Syndrome, although Sudden Infant Death Syndrome (SIDS) and miscarriage were listed as well. The range of the recommendation is rather wide – the CDC targeted any woman who might be or become pregnant (so, any sexually active woman capable of becoming pregnant). The recommendation has been widely criticized.
 
A number of commentators noted the shaky evidential basis for the advisory. Regarding Fetal Alcohol Syndrome, for example, there is a lot we do not know regarding the amounts of alcohol that are dangerous, and it has been suggested that genetics might play a role in propensity to develop the Syndrome. Regarding SIDS, some evidence suggests the link between alcohol and SIDS is moderated by parents co-sleeping with infants after abusing alcohol – but the advice offered by the CDC did not flag this indirect (potential causal) link.
 
Writing in the LA Times, the philosopher Rebecca Kukla also emphasized the contributions such messages make to creating a culture of shame surrounding women and pregnancy (here). Writing for Time, Darlena Cunha argued that the CDC advice is overly paternalistic, and discriminates against women (here).
 
I do not wish to justify the CDC. I rolled my eyes like many others when I first heard of the recommendations. But here’s a question: why might the CDC release such an advisory? I could imagine someone thinking like this. Well, there should be higher awareness of potential damages of alcohol on a developing fetus. The CDC has the function of alerting the US public to various health risks, and is something of a trusted source as it fulfills this function. But people will not base their decision on the CDC alone. They will be biased in their assessment of evidence, and they may also rely on the first bit of pseudoscience to pop up on Google. So we should come out forcefully, in the hopes that our voice will count for more than a more moderate recommendation might. This way, perhaps we will do more good. (Imagine trying to convince your kids not to run out into the road. You might scare them out of such a behavior by emphasizing the very unlikely but goriest possible outcome.)
 
Of course, I have no idea how the CDC reasoned nor what led to the nature of the advisory they released. What I want to ask is whether institutions we trust to deliver evidence-based advice ought to reason in this way.
Arguably, they should not. We want our experts to be experts, not to be another source of bloviating rhetoric in the public sphere. Evidence-based experts have the credibility they do because they know the evidence. It seems plausible, then, that our experts should fulfill their function in a certain way. They should pay attention to the way their messages are framed. Their messages should be framed in a way that respects people’s autonomy over their own health choices, and that treats decision-makers as reasonable individuals capable of weighing relevant evidence. Doing so would presumably lead to a more moderate message – one that, in this case, emphasized the potential links between alcohol use and fetal alcohol syndrome, that admitted just how much we do not know regarding this question, and that stressed potential reasonable responses to the existing evidence. Importantly, this can be done without overstating the case, without ignoring the nature of the risk (as seems to have happened regarding the alcohol-SIDS link), and without ignoring the amount of risk associated (as seems to have happened regarding the alcohol-Fetal Alcohol Syndrome link).

The unbearable asymmetry of bullshit

By Brian D. Earp (@briandavidearp)

* Note: this article was first published online at Quillette magazine. The official version is forthcoming in the HealthWatch Newsletter; see http://www.healthwatch-uk.org/.

Introduction

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.

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