Perceived Risks, Benefits, and Interest in Participating in Environmental Health Studies That Share Personal Exposure Data: A U.S. Survey of Prospective Participants

Little is known about the willingness of prospective study participants to share environmental health data. To fill this gap, we conducted a hypothetical vignette survey among 1,575 women who have volunteered to be contacted about breast cancer studies. Eighty-three percent were interested in participating in the environmental studies, with little difference whether data were restricted to the research team, shared with approved researchers, or publicly accessible. However, participants somewhat preferred controlled access for children’s data. Respondents were more interested in studies with environmental rather than biological samples and more interested when researchers would return personal results, a practice of increasing importance. They were more reluctant to share location or to participate if studies involved electronic medical records. Many expressed concerns about privacy, particularly security breaches, but reidentification risks were mentioned infrequently, indicating that this topic should be discussed during informed consent.