Encouraging Participation and Transparency In Biobank Research

TitleEncouraging Participation and Transparency In Biobank Research
Publication TypeJournal Article
Year of Publication2018
AuthorsSpector-Bagdady, K., De Vries, R. G., Gornick, M. C., Shuman, A. G., Kardia, S., & Platt, J.
JournalHealth Affairs
Volume37
Pagination1313-1320
Date Published08/2018
Abstract

Medical biobanks often struggle to obtain sustainable funding. Commercialization of specimens is one solution, but disclosure of commercial interests to potential contributors can be dissuasive. Recent revisions to the federal human subjects research regulations will soon mandate such commercialization disclosure in some circumstances, which raises questions about implications for practice. In this nationally representative, probability-based survey sample of the US adult population, we found that 67 percent of participants agreed that clear notification of potential commercialization of biospecimens is warranted, but only 23 percent were comfortable with such use. Sixty-two percent believed that profits should be used only to support future research, and 41 percent supported sharing profits with the public. We also considered other factors related to disclosure in our analysis and argue for a “disclosure plus” standard: informing potential contributors that their biospecimens might be accessed by commercial organizations and explaining how profits would be used to both enhance transparency and facilitate contributors’ altruistic motivations.