Encouraging Participation And Transparency In Biobank Research

• Published in: Health Affairs Vol. 37; no. 8; pp. 1313 - 1320
• Main Authors: Spector-Bagdady, Kayte, De Vries, Raymond G., Gornick, Michele G., Shuman, Andrew G., Kardia, Sharon, Platt, Jodyn
• Format: Journal Article
• Language: English
• Published: United States The People to People Health Foundation, Inc., Project HOPE 01.08.2018
• Subjects: Adolescent; Adult; Altruism; Biobanks; Biological Specimen Banks; Biomedical Research; Charitable trusts; Commerce; Commercialization; Disclosure; Ethics; Female; Funding; Hospitals; Human Experimentation - legislation & jurisprudence; Human subjects; Humans; Information Dissemination; Information sharing; Informed consent; Male; Medical research; Middle Aged; Notification; Participation; Personal health; Privacy; Profits; Regulation; Research subjects; Revisions; Surveys and Questionnaires; Transparency; Values; Variables; Young Adult; United States > US; Ethical Issues; Business Of Health; Legal/Regulatory Issues; Public Opinion; Research And Technology
• ISSN: 0278-2715; 2694-233X; 1544-5208; 2694-233X
• DOI: 10.1377/hlthaff.2018.0159

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.