Genomic research is rapidly expanding our knowledge about the genetic contributors to health and disease. A broad range of health benefits will flow from this research, including tests to predict disease risk and guide drug use, innovative therapies, and improved understanding of the interactions between genetic and environmental contributors to health. How ever, the specific benefits will vary for different diseases and populations, influenced by the nature of the genetic and non-genetic contributors, and the availability and safety of therapeutic options. T he likelihood of benefit for a particular individual or group will also be influenced by social, political and economic factors such as access to health care, meaning attached to genetic risk information, and cost and acceptability of specific interventions. In particular, medically underserved and marginalized populations may experience greater barriers to receiving benefit from genomic health applications, with the potential for genomics to exacerbate existing health disparities. In this renewal application of the Center for Genomics and Healthcare Equality, we will build on our existing work to develop methods for enhancing the benefits of genomic translation, with particular attention to the use of genomic technology to address population health and health disparities.
The specific aims of our center are to: (1) Characterize the range of challenges and opportunities in the translation process from genomic discovery to health benefit with an emphasis on targeting benefits for medically underserved populations;(2) Develop methods to build and evaluate university -community and interdisciplinary partnerships, including deliberative processes and strategies to identify common ground;(3) Develop tools to assist decision-making about the clinical use and reimbursement of genomic health applications;(4) Provide training opportunities to encourage the participation of researchers from underrepresented minorities in the Center's research agenda and other ELSI research;(5) Stimulate collaborative partnerships that result in additional funded research addressing these and related questions.
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| 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 |
| Goodman, Jessie L; Amendola, Laura M; Horike-Pyne, Martha et al. (2017) Discordance in selected designee for return of genomic findings in the event of participant death and estate executor. Mol Genet Genomic Med 5:172-176 |
| 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: |
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