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.
|Burke, Wylie; Appelbaum, Paul; Dame, Lauren et al. (2015) The translational potential of research on the ethical, legal, and social implications of genomics. Genet Med 17:20-Dec|
|James, Rosalina D; Gold, Dana E; St John-BlackBird, Arlene et al. (2015) Factors that influence mammography use among older American Indian and Alaska Native women. J Transcult Nurs 26:137-45|
|Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group (2014) The EGAPP initiative: lessons learned. Genet Med 16:217-24|
|Burke, Wylie (2014) Genetic tests: clinical validity and clinical utility. Curr Protoc Hum Genet 81:9.15.1-8|
|Burke, Wylie; Brown Trinidad, Susan; Press, Nancy A (2014) Essential elements of personalized medicine. Urol Oncol 32:193-7|
|Kocarnik, Jonathan M; Fullerton, Stephanie M (2014) Returning pleiotropic results from genetic testing to patients and research participants. JAMA 311:795-6|
|James, Rosalina; Tsosie, Rebecca; Sahota, Puneet et al. (2014) Exploring pathways to trust: a tribal perspective on data sharing. Genet Med 16:820-6|
|Lee, Helen H; Milgrom, Peter; Starks, Helene et al. (2013) Trends in death associated with pediatric dental sedation and general anesthesia. Paediatr Anaesth 23:741-6|
|Guzauskas, Gregory F; Garrison, Louis P; Stock, Jacquie et al. (2013) Stakeholder perspectives on decision-analytic modeling frameworks to assess genetic services policy. Genet Med 15:84-7|
|James, Rosalina D; McGlone West, Kathleen; Madrid, Teresa M (2013) Launching native health leaders: reducing mistrust of research through student peer mentorship. Am J Public Health 103:2215-9|
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