ELSIcon2022 • Pre-recorded Panel
- Sonya Jooma - All of Us Research Program, National Institutes of Health, Deputy Policy Director
- Katherine Blizinsky, PhD - All of Us Research Program, National Institutes of Health, Policy Director
- Subhashini Chandrasekharan, PhD - NIH, ELSI Lead, Policy Office, The All of Us Research Program
The All of Us Responsible Conduct of Research Training: Fostering Ethical and Socially Responsible Research with Data from All of Us Participants
The All of Us Research Program is an ambitious effort to enroll one million or more individuals living in the United States to gather data on the behavioral, environmental, and biological factors, including genetic factors, that influence the health of individuals, groups, and communities. In particular, the program focuses on recruiting individuals from groups that have been historically underrepresented in biomedical research and making the All of Us data available to a broad range of researchers. Of paramount importance in this endeavor are ensuring that participants’ privacy is adequately protected and that data are not misused for nefarious or stigmatizing purposes, which the program seeks to accomplish by cultivating the trustworthiness of its data users through, among other strategies, user education.
To that end, All of Us set out to develop a tailored, self-navigated Responsible Conduct of Research (RCR) Training to inform its data users about the ethical frameworks and expectations for the responsible conduct of research using human data, and stimulate awareness of the unique considerations around diverse populations; race, ethnicity, and genetic ancestry; and sensitive, socially charged data types like genetics and genomics. The RCR undertaking was especially critical given the All of Us participant cohort oversamples from groups that have been historically harmed by the biomedical research endeavor and bear a disproportionately large extant stigma burden.