Evolving public views on the value of one's DNA and expectations for genomic database governance: Results from a national survey.

ABSTRACT: We report results from a large survey of public attitudes regarding genomic database governance. Prior surveys focused on the context of academic-sponsored biobanks, framing data provision as altruistic donation; our survey is designed to reflect four growing trends: genomic databases are found across many sectors; they are used for more than academic biomedical research; their value is reflected in corporate transactions; and additional related privacy risks are coming to light. To examine how attitudes may evolve in response to these trends, we provided survey respondents with information from mainstream media coverage of them. We then found only 11.7% of respondents willing to altruistically donate their data, versus 50.6% willing to provide data if financially compensated, and 37.8% un

SUBMITTER: Briscoe F 

PROVIDER: S-EPMC7065739 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature