Stephanie M. Fullerton, PhD, Associate Professor of Bioethics & Humanities, Adjunct Associate Professor of Epidemiology and Genome Sciences, University of Washington
Precision medicine, defined by NIH as “an emerging approach for disease treatment and prevention that takes into account individual variability in environment, lifestyle and genes,” is predicated on programs of biomedical (especially genomic) research that gather, aggregate, and store for indefinite open-ended use patients’ biological specimens, self-reported (and soon mobile-mediated) lifestyle and environmental exposure data, as well as private health information. The scale of such research, which combines features of longitudinal cohort-based (epidemiological) investigation with information-centered ‘big data’ analytics, is unprecedented – both in the degree to which it insists on unfettered access to intimate individual data and in the extent that such efforts are pursued in the context of on-going healthcare delivery. Though risks to privacy associated with re-identification are well-recognized, other consequences of pursuing genomic discovery in the context of clinical care, including laying novel (frequently uncertain) information at the feet of patients, providers and their healthcare institutions, remain underexplored. Drawing on qualitative research with a diverse range of stakeholders at the forefront of clinical genomic implementation, Dr. Fullerton will describe current tensions and discuss their implications for the achievement of medical precision in the post-genomic era.
For further information or to convey suggestions about future speakers, contact Paul S. Appelbaum, MD, Director, Center for Research on Ethical/Legal/Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Department of Psychiatry, at 646-774-8630 or [email protected].
Stephanie M. Fullerton, D.Phil, is Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine. She is also Adjunct Associate Professor in the UW Departments of Epidemiology and Genome Sciences, as well as an affiliate investigator with the Public Health Sciences division of the Fred Hutchinson Cancer Research Center. She received a PhD in Human Population Genetics from the University of Oxford and later re-trained in Ethical, Legal, and Social Implications research with a fellowship from the NIH National Human Genome Research Institute.
Dr. Fullerton’s work focuses on the ethical and social implications of genetic and genomic research, biobanking, and clinical genetic testing, including researcher and participant perspectives on data-sharing, secondary use, result return, and clinical implementation. She leads an exploratory research project (R21) focused on patient safety in genome medicine, is co-Investigator on the Community-Based Evaluation of APOL1 Genetic Testing in African Americans study (Young/Burke, PIs), and is affiliated with the UW Center for Genomics and Healthcare Equality, a Center of Excellence in ELSI Research (Burke, PI). In addition, she co-directs the Ethical and Psychosocial Implications Research component of the NEXT Medicine Clinical Sequencing Exploratory Research (CSER) project (Jarvik, PI) and serves as a co-Investigator with the Electronic Medical Records and Genomics (eMERGE) Network project at Group Health Cooperative (Jarvik/Larson, PIs).
This event is sponsored by the Center for Research on Ethical/Legal/Social Implications of Psychiatric, Neurologic & Behavioral Genetics, and the Department of Psychiatry, Columbia University Medical Center. This seminar is part of the Seminar on Ethical, Legal and Social Implications of Genetics series.
