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Health Equity and the Genomics Enabled Learning Health System
Ethical, Legal and Social Implications of Learning Health Care SystemsUniversity of MichiganVence Bonham, J.D.Associate Investigator Social and Behavioral Research BranchKatherine Blizinsky, Ph.D.Research Fellow Social and Behavioral Research Branch
“Groups adversely affected by disparities could be among those that benefit most from a learning health care system”
Genomics-Enabled Learning Health Care Systems, Workshop Summary , 2015, National Academies Press, Washington D.C.
How can genomic-enabled LHS enhance health equity?
Revision ofKnowledge
What does the current data suggest?How can that be used to improve care?
Does use of genomic information improve health outcomes?When and for whom?
How does this new information change assumptions?What research is necessary to improve information utility?
Blizinsky K, andBonham VL, 2016
The Challenge
Challenges in use of genomic big data for health equity
Popejoy, AB, and Fullerton, SM.Genomics is failing on diversity.Nature. 2016 Oct 12;538(7624):161-164.
Popejoy AB, Fullerton SM, Nature, 538:161-164, October 13,2016
Why Does Representation Matter?
“Disparities may result from errors that are related neither to access to care nor to posited “physiological differences” but, rather, to the historical dearth of control populations that include persons of diverse racial and ethnic backgrounds.”
Manrai AK et al. Genetic Misdiagnoses and the Potential for Health Disparities, New England Journal of Medicine, 375(7):655-665, (201^)
Challenges in use of genomic big data for health equity
Yasuda, SU, Zhang, L, and Huang, S-M.The Role of Ethnicity in Variability in Response to Drugs: Focus on Clinical Pharmacology Studies.ClinPharmacolTher. 2008 Sep;84(3):417-23.
Case Study
Plavix (clopidogrel)
Plavix (clopidogrel)
Plavix is a prescription medicine used to treat people who have any of thefollowing:Chest pain due to heart problemsPoor circulation in their legs (peripheral arterial disease)a heart attacka stroke
CYPC219/Plavix; rs4244285
>50% A in Polynesia
State of Hawaii Files Suit
In March 2014, Hawaii’s Attorney General filed a lawsuit alleging on behalf of the state of Hawaii that the makers of Plavix have been deceptively marketing and unfairly labeling Plavix since its launch more than 15 years ago by failing to alert consumers that the drug has "a diminished or no effect on approximately 30 percent of the [Hawaiian] population because they metabolize the drug poorly due to their genetic traits.(Genome Web, April 16, 2014)
Vence L. Bonham, J.D., Shawneequa L. Callier, J.D., and Charmaine D. Royal,Ph.D. NEngl J Med 2016;374:2003-2005May26, 2016DOI:10.1056/NEJMp1511294
“Eventually, precision medicine may revolutionize our understanding of race and its utility (or lack thereof) in clinical practice.”
Vence L. Bonham, J.D., Shawneequa L. Callier, J.D., and Charmaine D. Royal, Ph.D. N Engl J Med 2016; 374:2003-2005May 26, 2016DOI: 10.1056/NEJMp1511294
Hurdles toovercome:
Vence L. Bonham, J.D., Shawneequa L. Callier, J.D., and Charmaine D. Royal, Ph.D. N Engl J Med 2016; 374:2003-2005May 26, 2016DOI: 10.1056/NEJMp1511294
Increase inclusion of patients of diverse ancestry in genomics and other biomedical researchControl of rising drug costsImprove the ease and usefulness of implementing a precision medicine approach
Email: bonhamv@mail.nih.gov
Race and EthnicityAre Important for the LHS
Social Domains
EducationFinancial Resource StrainExposure to ViolenceSafe at homeSocial IdentityRace, and Ethnicity

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