The National Institutes of Health (NIH) is seeking feedback (NOT-OD-15-107) to help it in creating a national research cohort of one million or more Americans as part of the President’s proposed Precision Medicine Initiative (PMI) (see Update, May 19, 2015). The agency is specifically interested in feedback relating to the development and implementation of effective community engagement strategies for the cohort, and the ability to conduct transformative research to address health disparities. The aim is to assemble a “cohort reflective of the rich diversity of the U.S. population.”
NIH is seeking comment on any or all of the following topics:
Community Engagement Strategies for a Diverse Sustained U.S. Precision Medicine Cohort:
- The factors and incentives that would enable participation or make it more likely for people historically underrepresented in research to participate, including examples of successful models of recruiting and retaining participants from communities historically underrepresented in research.
- Community engagement strategies and partnerships that can facilitate and integrate multiple perspectives at the community and individual level and account for diverse, social, religious, economic, and geographic settings.
- The barriers to participation in the precision medicine cohort and strategies to address these barriers.
- Ways to avoid potential stigmatization of subpopulations and to manage unintended adverse consequences of the precision medicine cohort.
- Safeguards that should be implemented to reassure communities of the net positive potential of precision medicine cohort to understand health and disease and improve the health of all segments of the U.S. populations.
- Priority health disparities research questions that can be uniquely addressed within the proposed cohort.
- Opportunities to study the relative influence of health determinants (e.g. personal, social, economic, environmental factors) on disease risk, disease mechanism, and individual response to therapy.
- Opportunities to obtain new scientific knowledge regarding individual variability in genes, environment, and lifestyle and their interactions as they affect the incidence of progression of illness where there are significant population disparities in disease incidence, prevalence, and outcomes.
- Novel methods to gather data on geographic, environmental, and social determinants of health.
- Novel ways to assess the historical as well as current factors that predispose the individuals in certain population groups to higher disease incidence or shorter survival.
Responses to the request for information are due June 19, 2015 and must be submitted online here.