Precision Medicine: Perspectives from Community Health Centers and Community-Based Organizations
Monday, September 12, 2016
Joon-Ho Yu, MPH PhD, Pediatrics, University of Washington School of Medicine
Editor's note: Dr. Yu will be presenting on this topic at the Fall Primary Care Conference in Denver on October 17
Precision medicine (PM) is an approach to disease treatment and prevention that accounts for individual genetic, environmental and lifestyle differences . While PM has potential to improve healthcare, many providers remain skeptical. Some argue that PM and the use of genetic information, in particular, is “not yet ready for prime time.” But with the launch of the much anticipated Precision Medicine Initiative® (PMI) in 2015, President Obama and NIH Director Francis Collins envision a future in which precision medicine will improve health, for all.
One important barrier to realizing this vision is that the vast majority of genetic studies have been conducted with white people and this bias severely limits the utility of genetic information across our diverse U.S. population. Recent evidence suggests that failing to account for underrepresented racial and ethnic minorities in genomic studies may drive a disproportionately higher false positive rate of genetic tests among these populations . This translates into harms such as unnecessary surveillance or prophylactic treatment among positive individuals and false reassurance among negative family members . Consistent with the importance of inclusion, the launch of a large national cohort study entitled the Precision Medicine Initiative® – Cohort Program (PMI-CP) has emphasized the inclusion of underrepresented minority populations. More broadly, efforts to build large precision medicine (PM) cohort studies are motivated, in part, by an ethic of social justice, inclusion and partnership with underrepresented and underserved communities.
Consistent with this vision, healthcare and community organizations that serve underrepresented populations are increasingly partnering with PM researchers and playing an important role in framing the pros and cons of participating in PM research. FQHCs are expected to help recruit approximately 151,000 participants by 2019 for the PMI-CP®. This would constitute 15% of recruitment goal of 1 million participants. A number of FQHCs have been awarded pilot grants to study and demonstrate the feasibility of recruitment and enrollment (Table 1) . Furthermore, efforts have been made to engage underrepresented communities through community town-halls and group discussions, and to survey overall support for and intent to participate in the PMI .
In addition to expanding base knowledge about PM, the PMI-CP® and similar efforts have potential to help improve healthcare disparities and public health . Some examples might include a focus on targeting medical therapies that have the potential to ameliorate health disparities at the intersection of social inequalities and genetic contributions . It could include generating neighborhood-level data to further support strategies to address social determinants through public health interventions . Despite these potential avenues to benefit, inclusion of underrepresented communities into PM studies involving genomics presents potential risks from the disclosure of individual genetic research results (e.g., psychosocial and iatrogenic harms) and aggregate study results (e.g., stigma and discrimination from inappropriate group generalizations) that must be considered .
CHC provider and patient perspectives are vitally important to ensure that the benefits of PM are equitably realized by underserved and underrepresented communities and to avoid the potential harms to vulnerable populations. If you’re excited or concerned about PM or both, come to the 2016 CHAMPS/NWRPCA Annual Primary Care Conference and participate in our session “Precision Medicine: Perspectives from Community Health Centers and Community Based Organizations” on Monday, October 17, 2016. Session participants will learn about the pros and cons of precision medicine, precision medicine research including current efforts to develop a national precision medicine cohort study involving recruitment from FQHCs. Most importantly, you will have an opportunity to give voice to the perspective of CHCs and patients on this important topic.
Finally, if interested in on-going studies on attitudes toward precision medicine, genetics, and the implications of health technologies among community health clinics, primary care providers, and underserved communities, contact Dr. Joon-Ho Yu, firstname.lastname@example.org or 206-685-3491.
1. NIH. Precision medicine initiative cohort program. https://www.nih.gov/precision-medicine-initiative-cohort-program (September 8, 2016),
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4. NIH. Precision medicine initative cohort program funding. https://www.nih.gov/research-training/precision-medicine-initiative/funding (September 8, 2016),
5. Kaufman, D.J.; Baker, R.; Milner, L.C.; Devaney, S.; Hudson, K.L. A survey of u.S adults' opinions about conduct of a nationwide precision medicine initiative(r) cohort study of genes and environment. PLoS One 2016, 11, e0160461.
6. Khoury, M.J.; Galea, S. Will precision medicine improve population health? JAMA 2016.
7. Smith, C.E.; Fullerton, S.M.; Dookeran, K.A.; Hampel, H.; Tin, A.; Maruthur, N.M.; Schisler, J.C.; Henderson, J.A.; Tucker, K.L.; Ordovas, J.M. Using genetic technologies to reduce, rather than widen, health disparities. Health affairs (Project Hope) 2016, 35, 1367-1373.
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