The AAMC June 19 submitted a letter to the National Institutes of Health (NIH) regarding strategies to improve community engagement and address health disparities via President Obama’s proposed Precision Medicine Initiative (PMI). The request for information was published on May 29.
Given extensive inequities in health outcomes experienced across socio-demographic groups, the AAMC supports NIH’s efforts to develop community engagement strategies that create a diverse national research cohort for the PMI. The letter acknowledges that a diverse cohort, coupled with PMI’s intended collection of risk factor, socioeconomic, and genetic data, offers enhanced opportunities to identify multi-level drivers of health inequity and potential intervention points. The AAMC commends NIH for ensuring proper safeguards are in place, including the NIH Genomic Data Sharing Policy, which protects participants’ genomic data.
In its letter, the AAMC recommends NIH continue to work with community groups to develop educational programs about the PMI to increase participation. The association also encourages NIH to include community input during the entire research process, particularly when reporting results of PMI studies to participants. To encourage innovation in patient care, the AAMC also recommends the PMI work to evaluate how genes and gene-environment interactions contribute to health.
The success of the PMI is largely dependent on the diversity of the cohort. The letter encourages NIH to continue to seek new knowledge about how to engage in the PMI individuals from groups historically underrepresented in research and to evaluate these engagement efforts.