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.
|Green, Robert C; Goddard, Katrina A B; Jarvik, Gail P et al. (2016) Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine. Am J Hum Genet 98:1051-66|
|Joseph, Galen; Chen, Flavia; Harris-Wai, Julie et al. (2016) Parental Views on Expanded Newborn Screening Using Whole-Genome Sequencing. Pediatrics 137 Suppl 1:S36-46|
|Wolf, Susan M; Burke, Wylie; Koenig, Barbara A (2015) Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide. J Law Med Ethics 43:486-501|
|Frye, Mark A; Doederlein, Allen; Koenig, Barbara et al. (2015) National survey and community advisory board development for a bipolar disorder biobank. Bipolar Disord 17:598-605|
|Joseph, Galen; Guerra, Claudia (2015) To worry or not to worry: breast cancer genetic counseling communication with low-income Latina immigrants. J Community Genet 6:63-76|
|Garrett, Sarah B; Koenig, Barbara A; Brown, Arleen et al. (2015) EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California. Clin Transl Sci 8:362-6|
|McCullough, Laurence B; Brothers, Kyle B; Chung, Wendy K et al. (2015) Professionally Responsible Disclosure of Genomic Sequencing Results in Pediatric Practice. Pediatrics 136:e974-82|
|Lemke, Amy A; Harris-Wai, Julie N (2015) Stakeholder engagement in policy development: challenges and opportunities for human genomics. Genet Med 17:949-57|
|Michie, Marsha; Allyse, Megan (2015) Findings of nonparentage: a case for autonomy. Pediatrics 135:e284-5|
|Dingel, Molly J; Ostergren, Jenny; McCormick, Jennifer B et al. (2015) The media and behavioral genetics: Alternatives coexisting with addiction genetics. Sci Technol Human Values 40:459-486|
Showing the most recent 10 out of 32 publications