Harvesting the benefits of genomics requires a new kind of transdisciplinary cooperation. Over the next three years, we will create the Center for Transdisciplinary ELSl Research in Translational Genomics (CT2G) to address key ELSl questions in translational research. The proposed Center brings together the unique resources of Kaiser Permanente Northern California (KPNC), including its Division of Research, and the University of California, San Francisco (UCSF), including the Hastings College of the Law Consortium on Law, Science & Health Policy. A key CT2G resource for training, research, deliberation, and policy analysis is the Kaiser Permanente Research Program on Genes, Environment, and Health (RPGEH), designed to foster epidemiological studies. The RPGEH links together participants' data from electronic medical records, biospecimens, health surveys and geographic information systems. The RPGEH includes genome-wide genetic data and measures of telomere length from a sample of over 110,000 men and women, who constitute the Genetic Epidemiology Research in Adult Health and Aging (GERA) cohort. Deepening the existing collaborations between scientists and clinicians at KPNC and UCSF, and utilizing the unique structure of KPNC's integrated health care delivery system, we aim to: 1) Create CT2G and nurture its development as a novel resource for ELSl research in translational genomics. * Implement a management plan and form a Steering Committee and External Advisory Panel * Develop a strong intellectual community through a website, seminar series, and annual conferences * Fund small pilot projects to elucidate barriers to effective genomics translation 2) Convene joint KPNC/UCSF working groups to address critical issues in translational genomics. Focusing on projects with tangible outcomes, we will bring together scholars who have not yet collaborated, creating a blueprint for long-term transdisciplinary work that joins empirical and normative approaches. 3) Plan and initiate a program in ELSl education focused on pre-doctoral students and clinicians. * To expand the pool of under-represented minority ELSl scholars, we will plan and gain approval for a pre-doctoral fellowship program for students from a range of disciplines. * To enhance transdisciplinary collaboration, we will develop a one year ELSl fellowship for clinicians from multiple fields, including nursing, pharmacy, genetic counseling, and clinical medicine.
To facilitate the translation of genetic discoveries into improvements in prevention, clinical care, and public health, we will create a Center to encourage collaboration among scholars from many fields, and to train clinicians. The CT2G will develop better ways to protect research subjects and create strategies for inclusion of public voices in the management of genomic data. Our goal is to ensure that society benefits from genomic discoveries in a manner that diminishes, rather than exacerbates, health disparities.
|Wolf, Susan M; Scholtes, Emily; Koenig, Barbara A et al. (2018) Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants. J Law Med Ethics 46:87-109|
|Wolf, Susan M; Amendola, Laura M; Berg, Jonathan S et al. (2018) Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium. Genet Med 20:545-553|
|Radecki Breitkopf, Carmen; Wolf, Susan M; Chaffee, Kari G et al. (2018) Attitudes Toward Return of Genetic Research Results to Relatives, Including After Death: Comparison of Cancer Probands, Blood Relatives, and Spouse/Partners. J Empir Res Hum Res Ethics 13:295-304|
|Bowen, D J; Hyams, T; Goodman, M et al. (2017) Systematic Review of Quantitative Measures of Stakeholder Engagement. Clin Transl Sci 10:314-336|
|Berg, Jonathan S; Agrawal, Pankaj B; Bailey Jr, Donald B et al. (2017) Newborn Sequencing in Genomic Medicine and Public Health. Pediatrics 139:|
|De Clercq, Eva; Kaye, Jane; Wolf, Susan M et al. (2017) Returning Results in Biobank Research: Global Trends and Solutions. Genet Test Mol Biomarkers 21:128-131|
|Dry, Sarah M; Garrett, Sarah B; Koenig, Barbara A et al. (2017) Community recommendations on biobank governance: Results from a deliberative community engagement in California. PLoS One 12:e0172582|
|Zook, Matthew; Barocas, Solon; Boyd, Danah et al. (2017) Ten simple rules for responsible big data research. PLoS Comput Biol 13:e1005399|
|Deverka, Patricia A; Majumder, Mary A; Villanueva, Angela G et al. (2017) Creating a data resource: what will it take to build a medical information commons? Genome Med 9:84|
|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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