Genomic research is rapidly producing new opportunities for understanding disease biology, and promises to enhance health care and health outcomes significantly through improved strategies for prediction and prevention, targeted drug treatment, and innovative molecular-based therapies. As with other seminal developments in biomedicine and technology, successful clinical translation requires a careful evaluation of the benefits and harms of specific interventions, in order to encourage uses that improve health outcomes and minimize applications that cause harm or accelerate health care expenditures without commensurate benefit. This challenge is matched by the need to reduce health care disparities. A major concern in the era of genomic health care is to insure that the medically underserved can benefit fully from genome technology, while at the same time not experiencing additional disparities due to genetic discrimination. Yet these groups often experience significant barriers to health care, including limited access to services and culturally inappropriate care. In addition, minority groups may view genomic health care with suspicion, because of historic associations between genetics and racism or because genetic science is viewed as threatening core cultural values. These perceptions, which challenge the acceptability of clinical uses of genetics, need to be taken into account in determining the benefits and appropriate uses of genomic technology. This Center of Excellence in ELSI Research will be dedicated to addressing two overarching themes accompanying the clinical integration of genomics: the need to define criteria for clinical integration that lead to clinically and socially appropriate applications of genomic health care; and the need for a translational pathway that incorporates the goal of reducing health care disparities among the medically underserved. A major product will be the identification and assessment of policy options for addressing these challenges.
The specific aims of the Center are to: 1) Identify strategies for assessing the clinical utility of a range of different genomic applications to health care; 2) Assess the implications of different genomic health care applications for medically underserved populations; 3) Describe policy options for the clinical integration of genomes into health care, and their implications for addressing health and health care disparities; 4) Engage ELSI researchers and genetic scientists in on-going conversations about the interacting contributions of the environment, social structural factors, and genetics to health outcomes; 5) Provide training opportunities to encourage the participation of researchers from underrepresented minorities in the Center's research agenda and other ELSI research; and 6) Stimulate collaborative partnerships that result in additional funded research addressing these and related questions.
| James, Rosalina D; West, Kathleen M; Claw, Katrina G et al. (2018) Responsible Research With Urban American Indians and Alaska Natives. Am J Public Health 108:1613-1616 |
| Burke, Wylie; Beskow, Laura M; Trinidad, Susan Brown et al. (2018) Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance. J Law Med Ethics 46:79-86 |
| Barton, Krysta S; Tabor, Holly K; Starks, Helene et al. (2018) Pathways from autism spectrum disorder diagnosis to genetic testing. Genet Med 20:737-744 |
| Fohner, Alison E; Garrison, Nanibaa' A; Austin, Melissa A et al. (2017) Carnitine palmitoyltransferase 1A P479L and infant death: policy implications of emerging data. Genet Med 19:851-857 |
| Burke, Wylie (2017) Commentary to ""My Identical Twin Sequenced Our Genome"": Cautionary Genomics. J Genet Couns 26:279-280 |
| Korngiebel, Diane M; Thummel, Kenneth E; Burke, Wylie (2017) Implementing Precision Medicine: The Ethical Challenges. Trends Pharmacol Sci 38:8-14 |
| Bowen, D J; Hyams, T; Goodman, M et al. (2017) Systematic Review of Quantitative Measures of Stakeholder Engagement. Clin Transl Sci 10:314-336 |
| West, Kathleen McGlone; Blacksher, Erika; Burke, Wylie (2017) Genomics, Health Disparities, and Missed Opportunities for the Nation's Research Agenda. JAMA 317:1831-1832 |
| Fohner, Alison E; Garrison, Nanibaa' A; Austin, Melissa A et al. (2017) Response to Koeller et al. Genet Med 19: |
| Bowen, Deborah J; Hay, Jennifer L; Harris-Wai, Julie N et al. (2017) All in the family? Communication of cancer survivors with their families. Fam Cancer 16:597-603 |
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