S. Malia Fullerton, DPhil
Stephanie Malia Fullerton, D.Phil, is Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine. She received a D.Phil 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.
Her work explores researcher and participant perspectives on data-sharing, secondary use, and result return in the context of contemporary genomic research. She is also interested in scientists' understandings of human genetic variation and its relation to disease risk, the use of racial and ethnic constructs in the conduct and interpretation of genetic research, and the responsible incorporation of genomic methodologies into broader programs of health disparities research. She holds adjunct positions in the UW Departments of Genome Sciences and Epidemiology, is an affiliate investigator with the Public Health Sciences division of the Fred Hutchinson Cancer Research Center, and serves as a member of the Regulatory Support and Bioethics Core of the UW Institute of Translational Health Sciences.
- Fullerton SM, Knerr S, & Burke W (2012). Finding a place for genomics in health disparities research. Public Health Genomics, 15: 156-163.
- Fullerton SM, Wolf WA, Brothers KB, Clayton EW, Crawford DC, Denny JC, Greenland P, Koenig BA, Leppig KA, Lindor NM, McCarty CA, McGuire AL, McPeek Hinz ER, Mirel DB, Ramos EM, Ritchie MD, Smith, ME, Waudby CJ, Burke W, & Jarvik GP (2012). Return of individual research results from Genome-wide Association Studies: experience of the Electronic Medical Records & Genomics (eMERGE) network. Genetics in Medicine (special Symposium issue). Epub Feb 23: doi:10.1038/gim.2012.15.
- Fullerton, SM & Lee, SSJ (2011). Secondary uses and the governance of de-identified data: lessons from the Human Genome Diversity Panel. BMC Medical Ethics, 12:16.
- Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, & Burke W (2011). Research ethics. Research policy and participant preferences: the growing gulf. Science, 331(6015): 287-288.
- Walker L, Starks H, West KM, & Fullerton SM (2011). Evaluation of dbGaP data access requests: a call for greater transparency. Science Translational Medicine, 3(113): 113cm34.
- Ethnicity and community: impact of genetic findings and disclosing results., Whole Genome Approaches to Complex Kidney Diseases Meeting, Bethesda, MD, Feburary 2012
- Changing the Common Rule: what are the stakes for genomics?. (with W Burke), Medical Genetics Seminar Series, University of Washington, January 2012
- Participant engagement in research: why we can.t just walk away with the data., EURAC New Patient-Centric Perspectives in Medical Research: Ethical and Governance Challenges International Conference, Rome, Italy, October 2011
- Offering aggregate results to participants in genomic research: opportunities and challenges. (with LM Beskow, W Burke, & RR Sharp), P3G Making Connections Meeting, Montreal, Canada, October 2011
- New developments on governance and oversight - access to data by researchers and participants., 2011 ELSI Congress Plenary Panel, Chapel Hill, NC, April 2011
- Using genetic ancestry in epidemiological research: key assumptions., Visiting Lecture Series on .Identity, Ancestry, and Heritage: Multidisciplinary Perspectives., University of Tennessee Department of Anthropology, Knoxville, TN, November 2010
Awards, Honors and Grants Received
- Ruth L. Kirschstein NRSA Postdoctoral Fellowship, NIH F32-HG002629, "Negotiating Complexity: Common Disease and Diverse Genomes", 2002-2005
- B H 551/PHG 551/GS 573, Human Genomics: Science, Ethics, and Society (Autumn 2012)