Public Perspectives on Sharing Profits with Biospecimen Donors.

BACKGROUND: In current practice, individuals rarely share in the profits of research using their biospecimens. Many commentators defend this practice on the grounds that the contributions donors make are not important enough to merit a share of profits. Others argue that if researchers and sponsors profit, donors should too. Despite the importance of this debate, there are no data on the public's views. SUBJECTS AND METHODS: On-line survey of US adults selected to approximate the 2020 US census on age, gender, race, ethnicity, and geographic region. Respondents were asked whether biospecimen donors should share in the profits or receive payments across six scenarios, differing on whether the research yields a profit and which other parties share in the profits. RESULTS: 77.2% of respondents indicated that donors should share in the profits when researchers profit and 78.9% when sponsors profit. Support for profit sharing was strong across all groups assessed, although respondents aged 65 and older were less likely to think donors should share in the profits. CONCLUSIONS: A significant majority of a sample of the US public thinks individuals who donate their biospecimens should share in the profits of research that uses their samples. These findings offer compelling reason to reconsider current practice of not sharing profits with biospecimen donors.