Opportunity to comment on the one million+ cohort for the NIH “Precision Medicine Initiative”

NIH looking for strategies to address community engagement and health disparities

As part of President Obama’s proposed Precision Medicine Initiative (PMI), the National Institutes of Health (NIH) will need to assemble a study cohort of over one million Americans. Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle. The RFI states, “In order for the benefits of precision medicine and the PMI to be available to all people, including those who are medically underserved and/or historically underrepresented in biomedical research, or who, for reasons of systematic social disadvantage experience disparities in health, the NIH aims to assemble a cohort reflective of the rich diversity of the U.S. population.”                                             

Psychologists who have studied the recruitment and retention of underrepresented groups in clinical studies, or who have ideas and strategies to suggest to make optimal use of a large and diverse study cohort, are encouraged to respond to this RFI. Responses are requested by June 19, 2015.  NIH has created a webform for comments.  The topics for which comments are requested (250 word maximum response) include:

1. 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.

2. 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.

3. The barriers to participation in the precision medicine cohort and strategies to address those barriers.

4. Ways to avoid potential stigmatization of subpopulations, and to manage unintended adverse consequences of the precision medicine cohort.

5. Safeguards that should be implemented to reassure communities of the net positive potential of the precision medicine cohort to understand health and disease and improve the health of all segments of the US population.

And, regarding health disparities:

1. Priority health disparities research questions that can be uniquely addressed within the proposed precision medicine cohort.

2. 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.

3. 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.

Responders are free to address any or all of the items listed above. Questions may be directed to pmicommunityengagementrfi@mail.nih.gov.

Thanks for sharing your knowledge to benefit this important NIH study. For more information contact Pat Kobor in the APA Science Government Relations Office.