That question was asked on Wednesday by Dr Mark Sheehan, Oxford BRC Ethics Fellow at the Ethox Centre and a James Martin Research Fellow in the Program of Ethics of the New Biosciences, in a talk at the James Martin 21st Century School at Oxford.
Sheehan discussed how patient and public involvement (PPI) is becoming a requirement in many research contexts and how some researchers may struggle to see why and how this should be achieved for their projects. He pointed out that organisations such as INVOLVE (national advisory group, funded by the National Institute for Health Research) can offer advice on how to involve members of the public in research. What is less available, he argues, is a “sustained philosophical analysis of the ethical reasons for such involvement”.
From the abstract for his talk:
“The fundamental issue involves the nature of the ‘stake’ that society has in research done under its auspices: why should society be involved or have a say? On face of it, there are a number of candidate reasons for society’s involvement: (i) society pays and (ii) society has an obligation to its members to ensure that research effective and positively impacts their welfare. Neither of these reasons fully captures our intuitions about the importance of society’s voice: (i) Society doesn’t always pay and even when it doesn’t, we still may think that the involvement of society is important; and (ii), it is far from clear that PPI always makes research better or more effective.”
Sheehan suggests that with an answer to this question it is possible to move on to talk about the form of involvement – who should be involved and when and how? – and then develop “a meaningful picture of the kinds of justifications for various levels of involvement and across a range of forms of research”.
This talk was part of the James Martin Advanced Research Seminar Series and was also advertised via a Facebook group ‘Interesting Talks Oxford’ . The group has been set up to help people who, as it says in the group profile, “are rather frustrated at not knowing about all manner of interesting talks going on in and around Oxford”. After about three months, the group has almost 3,000 members and lists a wide range of talks and events. The group is looking at other ways to engage with the community, within and outside Facebook. RunCoCo is following the development with interest.