Using interviews from three different clinical studies, Dixon-Woods and Tarrant identify five recurring themes:
1- Research as Moral Act: Volunteers perceive participation as a moral act: they are willing to participate and cooperate only insofar as they are "able to defend the moral character" of their actions
2- Research as Risk: There was an awareness of risk and research scandals, and volunteers perceived a need to defend their choice to enter a study (rather than feeling like the choice was an obvious one that needed no explanation)
3- Trust in Regulation: Volunteers perceived that the research enterprise was regulated- that transgression of errant researchers would be "subject to punishment," though they had no familiarity at all with specific oversight structures
4- Signals of Trustworthiness: Participants sought "cues" and "signals" as to the values and trustworthiness of researchers. Informed consent, for example, was taken less as a substantive process than as a signal of the researcher's openness and integrity. Participants had strong expectations that researchers and affiliated institutions shared values of cooperation. And they saw the healthcare setting and affiliation of research personnel as "signaling" a kind of trustworthiness."
5- Trust of Professions: Building on item 4, participants made "swift" judgments about the trustworthiness of research personnel- not so much on the basis of their personal characteristics as their affiliation with trusted professions and institutions
The report helpfully contextualizes these findings within a broad sociological literature on giving, cooperation, and trust. Though the authors shy from offering specific prescription, two key themes emerge: oversight systems should focus on meeting these expectations; and regulation (whether external or internal to the profession), far from impeding research, creates social conditions in which patients can feel comfortable bearing risks imposed by strangers for the sake of strangers. (photocredit: Lucas 2008)