Understanding the potential of state-based public health genomics programs to mitigate disparities in access to clinical genetic services

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Abstract

Purpose

State health agencies (SHAs) have developed public health genomics (PHG) programs that play an instrumental role in advancing precision public health, but there is limited research on their approaches. This study examines how PHG programs attempt to mitigate or forestall health disparities and inequities in the utilization of genomic medicine.

Methods

We compared PHG programs in three states: Connecticut, Michigan, and Utah. We analyzed 85 in-depth interviews with SHA internal and external collaborators and program documents. We employed a qualitative coding process to capture themes relating to health disparities and inequities.

Results

Each SHA implemented population-level approaches to identify individuals who carry genetic variants that increase risk of hereditary cancers. However, each SHA developed a unique strategy—which we label public health action repertoires—to reach specific subgroups who faced barriers in accessing genetic services. These strategies varied across states given demographics of the state population, state-level partnerships, and availability of healthcare services.

Conclusion

Our findings illustrate the imperative of tailoring PHG programs to local demographic characteristics and existing community resources. Furthermore, our study highlights how integrating genomics into precision public health will require multilevel, multisector collaboration to optimize efficacy and equity.

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References

  1. 1.

    Roberts MC, Kennedy AE, Chambers DA, et al. The current state of implementation science in genomic medicine: opportunities for improvement. Genet Med. 2017;19:858–63.

  2. 2.

    Trivers K, Rodriguez J, Cox S, et al. The activities and impact of state programs to address hereditary breast and ovarian cancer, 2011–2014. Healthcare. 2015;3:948–63.

  3. 3.

    Khoury MJ, Bowen MS, Clyne M, et al. From public health genomics to precision public health: a 20-year journey. Genet Med. 2018:20;574–82.

  4. 4.

    West KM, Blacksher E, Burke W. Genomics, health disparities, and missed opportunities for the nation’s research agenda. JAMA. 2017;317:1831–2.

  5. 5.

    Carter-Pokras O, Baquet C. What is a “health disparity”? Public Health Rep. 2002;117:426–34.

  6. 6.

    Whitehead M. The concepts and principles of equity in health. Int J Health Serv. 1992;22:429–45.

  7. 7.

    Rose G. Sick individuals and sick populations. Int J Epidemiol. 1985;14:32–38.

  8. 8.

    Rose G. The strategy of preventive medicine. Oxford University Press; New York, 1992.

  9. 9.

    US Preventive Services Task Force. BRCA-related cancer: risk assessment, genetic counseling, and genetic testing. Recommendations for primary care practice. 2013. https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/brca-related-cancer-risk-assessment-genetic-counseling-and-genetic-testing. Accessed 11 June 2018.

  10. 10.

    Burton H, Sagoo GS, Pharoah P, et al. Time to revisit Geoffrey Rose: strategies for prevention in the genomic era. Ital J Public Health. 2012;9:e8665–8661.

  11. 11.

    Doyle YG, Furey A, Flowers J. Sick individuals and sick populations: 20 years later. J Epidemiol Community Health. 2006;60:396–8.

  12. 12.

    Frohlich KL, Potvin L. The inequality paradox: the population approach and vulnerable populations. Am J Public Health. 2008;98:216–21.

  13. 13.

    Forman AD, Hall MJ. Influence of race/ethnicity on genetic counseling and testing for hereditary breast and ovarian cancer. Breast J. 2009;15:S56–S62.

  14. 14.

    Institute of Medicine. Implications of genomics for public health. National Academies Press (U.S.); Washington DC, 2005.

  15. 15.

    Khoury MJ,Gwinn M,Burke W, et al. Will genomics widen or help heal the schism between medicine and public health?. Am J Prev Med. 2007;33:310–7.

  16. 16.

    McLaren L, McIntyre L, Kirkpatrick S. Rose’s population strategy of prevention need not increase social inequalities in health. Int J Epidemiol. 2010;39:327–77.

  17. 17.

    Frieden TR. A framework for public health action: the health impact pyramid. Am J Public Health. 2010;100:590–5.

  18. 18.

    Phelan JC, Link BG, Feldman NM. The genomic revolution and beliefs about essential racial differences: a backdoor to eugenics? Am Sociol Rev. 2013;78:167–91.

  19. 19.

    Cragun D, Bonner D, Kim J, et al. Factors associated with genetic counseling and BRCA testing in a population-based sample of young Black women with breast cancer. Breast Cancer Res Treat. 2015;151:169–76.

  20. 20.

    Health Resources and Services Administration. Funding opportunity announcement: regional genetics networks (HRSA-17-082). In: Maternal and Child Health Bureau Division of Services for Children with Special Health Needs. US Department of Health and Human Services; Rockville, Maryland, 2016.

  21. 21.

    St Pierre J, Bach J, Duquette D, et al. Strategies, actions, and outcomes of pilot state programs in public health genomics, 2003-2008. Prev Chronic Dis. 2014;11:E97.

  22. 22.

    Senier L, Lee R, Nicoll L. The strategic defense of physician autonomy: state public health agencies as countervailing powers. Soc Sci Med. 2017;186:113–21.

  23. 23.

    Charmaz K. Constructing grounded theory. 2nd ed. SAGE Publications Ltd.; London, 2014.

  24. 24.

    Sankar P, Cho MK, Condit CM, et al. Genetic research and health disparities. JAMA. 2004;291:2985–9.

  25. 25.

    Senier L, Shields M, Lee R, et al. Community-based family health history education: the role of state health agencies in engaging medically underserved populations in understanding genomics and risk of chronic disease. Healthcare. 2015;3:995–1017.

  26. 26.

    Hawkins AK, Hayden MR. A grand challenge: providing benefits of clinical genetics to those in need. Genet Med. 2011;13:197–200.

  27. 27.

    Chan L, Hart LG, Goodman DC. Geographic access to health care for rural Medicare beneficiaries. J Rural Health. 2006;22:140–6.

  28. 28.

    Senier L, Kearney M, Orne J. Using public-private partnerships to mitigate disparities in access to genetic services: lessons from Wisconsin. Adv Med Sociol. 2015;16:269–305.

  29. 29.

    United States Census Bureau. Quick facts. United States Census Bureau; Washington DC, 2010.

  30. 30.

    Wisinski C, Gehring J, Stewart L, et al. Healthy Homes University: an innovative approach to indoor air quality, asthma, and family history in a community setting. Public Health Genomics Program: Publications and Presentations 2007; Poster. http://www.michigan.gov/documents/mdch/HHU_poster_final_final_212469_7.pdf. Accessed 11 June 2018.

  31. 31.

    Largo TW,Borgialli M,Wisinski CL, et al. Healthy Homes University: a home-based environmental intervention and education program for families with pediatric asthma in Michigan. Public Health Rep. 2011;126 Suppl 1:14–26.

  32. 32.

    Duquette D,Lewis K,McLosky J, et al. Using core public health functions to promote BRCA best practices among health plans. Public Health Genomics. 2012;15:92–97.

  33. 33.

    Razak F, Smith GD, Subramaniam S. The idea of uniform change: is it time to revisit a central tenet of Rose’s “strategy of preventive medicine”? Am J Clin Nutr. 2016;104:1497–507.

  34. 34.

    Krieger N. Who and what is a “population”? Historical debates, current controversies, and implications for understanding “population health” and rectifying health inequities. Milbank Q. 2012;90:634–81.

  35. 35.

    Centers for Disease Control and Prevention. State public health genomics program map. Public Health Genomics Knowledge Base (v3.1). 2017. https://phgkb.cdc.gov/PHGKB/stateMapStartPage.action. Accessed 11 June 2018.

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Acknowledgements

This material is based upon work supported by the National Human Genome Research Institute of the National Institutes of Health, under award number 1K01HG006441-01A1. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the National Institutes of Health. The authors thank two anonymous reviewers for comments on drafts of this paper, and Pilar Ossorio, Daniel Kleinman, and Deb Franko for guidance on the execution of the research.

Author information

Correspondence to Laura Senier MPH, PhD.

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The authors declare no conflicts of interest.

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Senier, L., Tan, C., Smollin, L. et al. Understanding the potential of state-based public health genomics programs to mitigate disparities in access to clinical genetic services. Genet Med 21, 373–381 (2019) doi:10.1038/s41436-018-0056-y

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Keywords

  • Public health genomics
  • Precision public health
  • Health disparities
  • Determinants of health
  • Implementation

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