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.

Public Health Relevance

This project will provide information and tools for researchers, clinicians, community members and policymakers, in order to improve the scope of benefits from genomic health research.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003374-08
Application #
8274869
Study Section
Special Emphasis Panel (ZHG1-HGR-P (J1))
Program Officer
Boyer, Joy
Project Start
2004-09-01
Project End
2015-03-31
Budget Start
2012-04-01
Budget End
2013-03-31
Support Year
8
Fiscal Year
2012
Total Cost
$971,049
Indirect Cost
$172,548
Name
University of Washington
Department
Miscellaneous
Type
Schools of Medicine
DUNS #
605799469
City
Seattle
State
WA
Country
United States
Zip Code
98195
Burke, Wylie (2017) Commentary to ""My Identical Twin Sequenced Our Genome"": Cautionary Genomics. J Genet Couns 26:279-280
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
Korngiebel, Diane M; Thummel, Kenneth E; Burke, Wylie (2017) Implementing Precision Medicine: The Ethical Challenges. Trends Pharmacol Sci 38:8-14
West, Kathleen McGlone; Blacksher, Erika; Burke, Wylie (2017) Genomics, Health Disparities, and Missed Opportunities for the Nation's Research Agenda. JAMA 317:1831-1832
Bowen, D J; Hyams, T; Goodman, M et al. (2017) Systematic Review of Quantitative Measures of Stakeholder Engagement. Clin Transl Sci 10:314-336
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) Response to Koeller et al. Genet Med 19:
Korngiebel, Diane M; Fullerton, Stephanie M; Burke, Wylie (2016) Patient safety in genomic medicine: an exploratory study. Genet Med 18:1136-1142
Wang, Catharine; Gordon, Erynn S; Norkunas, Tricia et al. (2016) A randomized trial Examining The Impact Of Communicating Genetic And Lifestyle Risks For Obesity. Obesity (Silver Spring) 24:2481-2490
Fullerton, Stephanie M (2016) No Panacea: Next-Gen Sequencing Will Not Mitigate Adoptees' Lack of Genetic Family Health History. Am J Bioeth 16:41-43

Showing the most recent 10 out of 92 publications