How might we contribute to enhancing public understanding of research and its ethics? This is no single or simple answer to this. One of several solutions might be to further knowledge within the research encounter itself. However, this cannot be restricted to the consent form. More useful might be an impartial third party to discuss issues around research and ethics prior to consent.7
Yet, the question remains: how can a member of a scientific team truly be impartial? Furthermore, there is something to be said about the overburdening of participants with information being contrary
to autonomy. Last, beliefs about science, developed over the life-course, may be resistant to recalibration through a single event.
Thus, we might look first towards our educators to embed understandings of research and its ethics within pedagogy concerning science. Whilst this may be within the classroom, it also behoves biomedical investigators to incorporate discussion of the everyday work and ethical dilemmas of science into presentations, lectures and other forms of dissemination that aim to promote public scientific literacy. Such engagement could well include dialogue and debate about translational science, highlighting the need for individuals to take part in basic research, whilst also acting to enhance the autonomy of those potential participants by informing them of the realities (including scope and limits) of scientific practice. Discussions of ethics will help to ensure that uncertainties about research practices (e.g. what scientists are likely to do with incidental findings) are reduced (with the potential side-effect that some ‘barriers’ to participating in research are dismantled).
We can, therefore, see that a commitment to a public understanding of research agenda also increases the need for and role of bioethicists and other analysts of the ethical dimensions of science within civil society. Experts in biomedical ethics will necessarily work closely with science educators in order to enhance public debate and education.14
In so doing, the scope of ‘public bioethics’ will extend beyond the confines of institutionalised spaces of carefully proscribed, instrumental and narrowly defined deliberation, and extend far further than the occasional media interview or newspaper contribution. This is not, of course, to advocate for some kind of colonial expansion of bioethics. Rather, it is an acknowledgement of the liminality of bioethicists - that their ‘proper’ place is neither completely within or outwith biomedicine - and the recognition that as such these disciplinary experts are ideally positioned to engage different social worlds with one another. Arguably, there is, perhaps, even a moral duty to do so, if the development of public understandings of research and its ethics is indeed accepted as having potential to enhance (for instance) participant autonomy.
None of the above, though, should be read as an assertion that ‘the public’ itself has any kind of obligation to become ‘educated’ in the art of scientific research. This would be a resurrection of the ‘deficit model’ of the public understanding of science which social scientists and others have fought hard to reconstruct within policy and the academy. It is not the case that publics are ignorant in some global sense and are thus unable to appropriately engage with science; rather, particular individuals and social groups may be unfamiliar with some of the specifics of certain modes of research and ethical frameworks, and, as a consequence, have their autonomy compromised when they come to participate in studies. If blame for this lack of public familiarity with the processes of research were to be apportioned anywhere - and I am not convinced that this would be a particularly fruitful venture - then it might perhaps be placed on biomedical institutions themselves for emphasising the necessity of the public consumption of scientific facts rather than the mechanisms and means by which these generated; to find fault with the ‘ignorance’ of those non-expert publics whose research participation is essential to the constitution of such knowledge seems somewhat unfair. .
We should also remember that the nuances of publics’ knowledge can only be fully appreciated if we listen to what they themselves have to say about the meanings of research and its ethics, and to carefully regard their related concerns. Such dialogue could be developed through a range of initiatives, including deliberative events, science communication blogs, and other internet-based social media.15
The research tools of the social sciences (participant observation, interviews, focus groups and so on) would also play an important role (though in the process scholars in these traditions must necessarily also commit themselves to promoting wider public understandings and engagement with social science research and ethics).
Broad public dialogue and debate, and empirical social research into this, would serve several inter-related functions. Clearly, and most practically, it would locate any common uncertainties individuals and groups may have regarding particular types of biomedical research. These could then be addressed through wider education and engagement. However, listening and responding to public accounts of research and its ethics could also challenge prevailing notions over what counts as ‘ethical’, and who gets to adjudicate this. Arguably, it is paternalistic to assume a particular practice (e.g., failure to directly notify an individual of clinically-relevant incidental findings after taking part in research) is unethical if participants themselves consider, on reflection, it to be acceptable. After all, as sociologists have shown, a variety of individuals can enjoy carefully reasoned, informed debate about bioethics.1,2,4,16
Where ambivalence is evident, we might best regard this not as a ‘failure’ to formulate a normative agenda, but instead as evidence that the issue in question is more complex than we, as active researchers, have perhaps supposed.3
In sum, new forms of dialogue around research and its ethics will open up new spaces for symmetrical engagement between bioethicists, scientists and wider publics, contributing to the broader democratisation of the bioethical enterprise.