Abstract: Involving patients and the public in the research process has become a basic requirement in many research contexts. This represents an important step up from earlier ‘buzz words’: ‘transparency’ and ‘openness’. Researchers in some contexts struggle to see how or why this involvement should be achieved. Increasingly, through organisations such as INVOLVE, such researchers can find assistance on the ways in which they might broaden the involvement of patients and the public in their research. There is however less available by way of sustained philosophical analysis of the ethical reasons for such involvement. This paper is an initial attempt to redress this lack.
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.
Once we have an answer to this question we can ask about the form of that involvement – what can society’s ‘stake’ in research tell us about: (i) why it should be the public or patients rather than some other element of society who are involved?; and (ii), when and what form should the involvement take?
Overall with some general answers to these questions we will be able to develop a meaningful picture of the kinds of justifications for various levels of involvement and across a range of forms of research.
Dr Mark Sheehan is Oxford BRC Ethics Fellow at the Ethox Centre and a James Martin Research Fellow in the Program on Ethics of the New Biosciences. He received his PhD in Philosophy from The City University of New York, an MA (Hons) and a BA (Hons)/BSc from the University of Melbourne. Prior to coming to Oxford he was a lecturer in the Centre for Professional Ethics at Keele University, Ethics Fellow at the Mt. Sinai Medical School, New York and Adjunct Lecturer in the Philosophy Department at The City College of New York.