Ethics and Engagement

Today, all sorts of people are supposed to know about science. An article on the BBC this morning, ‘Children’s science questions ‘stump many parents’’, documented how many parents were “embarrassed” by their “failure” to answer questions like ‘how much does the earth weigh?’. Why, exactly, parents should know this rather esoteric fact is not, however, discussed.

So, do people need to know about science? Certainly, that seems to be the view of some kinds of public engagement programmes, which are often explicitly orientated towards educating ‘the public’. Social scientists have picked holes in this kind of enterprise, showing for a start that there are various kinds of publics, and that many of these groups are extremely knowledgeable about particular realms of science – especially those which have direct import for their lives.

These critiques are important, and are a useful reminder that just because someone isn’t a scientist doesn’t mean they’re ignorant! At the same time, though, we need to be careful not to throw the baby out with the bathwater. In the same way that not everybody is familiar with the minutiae of the worlds of finance, plumbing, law, or social care, we can’t expect that all people who have a stake in science – and that really is all people – to be knowledgeable about every aspect of it, and public engagement programmes can be a useful way of heightening awareness and encouraging dialogue and debates.

In particular, we might want to think about the potential for public engagement with research, rather than science per se. By that, I mean the processes by which facts are generated – as opposed to just the facts themselves (such as the weight of the earth). Why bother doing this? Simply put, if people don’t have much awareness of how research is actually undertaken, and what the point of it is, they can’t consent properly to taking part in it. Now, there are lots of problems with the idea that ‘informed consent’ is the be all and end all of research ethics. Still, though, it’s an important concept that structures research governance in all kinds of ways.

What are some of the issues with people unfamiliar with the processes of research taking part in it? For a start, there’s what bioethicists call the ‘therapeutic misconception’ – the belief of research participants that the investigation they’re involved in will be of direct therapeutic benefit to them (or to others). Linked to this is a belief that research may alert participants to health problems that aren’t clinically obvious yet – and that the study investigators will be able to provide (or point them towards) the care they need. Conversely, there’re also concerns around trust: some people don’t take part in research because they are worried that information about them will be made available to third-parties.

There are, then, ethical issues attached to public (mis)understandings about research; as such, there is an onus on bioethicists, scientific researchers and educators to enhance everyone’s knowledge of how research is actually undertaken, what its realistic implications are, and what its limitations might be. In so doing, participants will be better able to judge whether they would like to participate in research, and will be more informed about the studies they’re involved in. This might reduce the burden on scientists who have to deal with tricky questions about what to do about people under the therapeutic misconception once they’ve been participating in a study for a while, and also may in fact increase public trust in science and involvement in research.


By, Dr Martyn Pickersgill, University of Edinburgh (iSEI Visitor)


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