S. MALIA FULLERTON,
Office: A-204F Health Sciences Building
Publications | Recent Talks | Honors,
Awards, Grants | Courses | Curriculum Vita (PDF)
Stephanie Malia Fullerton, D.Phil, is Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine and Director of the Institute for Public Health Genetics in the Department of Biostatistics, UW School of Public Health. 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 genetics and genomics research, including researcher and participant perspectives on data-sharing, secondary use, and result return. 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 currently serves as a co-Investigator with the Center for Genomics and Healthcare Equality (Burke, PI) and directs the Ethics and Policy Core of the Partnership to Understand and Eliminate Disparate Outcomes (PUEDO) in Latinas Center for Population Health and Health Disparities (CPHHD) at the FHCRC (Thompson, PI). In addition, she co-directs the Project 3 (Ethical and Psychosocial Implications Research) component of the Clinical Sequencing Exploratory Research (CSER) project NEXT Medicine (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).
Dr. Fullerton is an active member of the American Society of Human Genetics, currently serving as Past-Chair of the Social Issues Committee.
- Kocarnik, JM, & Fullerton, SM (in press). Returning pleiotropic results from genetic testing to patients and research participants. JAMA.
- Garrison, NA, Rohlfs, RV, & Fullerton, SM (2013). Forensic familial searching: scientific and social implications. Nature Reviews Genetics, 14(7): 445.
- Beskow, LM, Fullerton, SM, Namey, EE, Nelson, DK, Davis, AM, & Wilfond, BS (2012). Recommendations for ethical approaches to genotype-driven research recruitment. Human Genetics, 131(9): 1423-31.
- Fullerton, SM, Knerr, S, & Burke W (2012). Finding a place for genomics in health disparities research. Public Health Genomics, 15(3-4): 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, 14(4): 424-31.
- Fullerton, SM (2011). The input-output problem: whose DNA do we study, and why does it matter? In Achieving Justice in Genomic Translation: Rethinking the Pathway to Benefit, eds. W Burke, KA Edwards, S Goering, S Holland & SB Trinidad, Oxford University Press: New York, NY, pp. 40-55.
- 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.
- “What place for genomics? Personalized medicine and addressing health disparities”, Distinguished Visiting Professor Lecture, Center for Bioethics and Health Law and the Graduate School of Public Health, University of Pittsburgh, February 2014
- “Got results? Communicating with participants and the public about the fruits of research”, Pacific NW Association of Clinical Research Professionals Annual Fall Education Event, Bastyr University, Kenmore, WA, September 2013
- “Leveraging EMRs for genetic research”, Balancing Privacy, Autonomy, and Scientific Progress: Patients’ Rights and the Use of Electronic Medical Records for Non-Treatment Purposes workshop, Case Western Reserve University School of Law, April 2013
- “Participant preferences as policy-relevant evidence: on being glad we asked”, Using and Abusing Evidence in Science and Health Policy Meeting, Banff, Alberta, Canada, June 2012
- “Ethnicity and community: impact of genetic findings and disclosing results”, Whole Genome Approaches to Complex Kidney Diseases Meeting, Bethesda, MD, February 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
Awards, Honors and Grants Received
- Ruth L. Kirschstein NRSA Postdoctoral Fellowship, NIH F32-HG002629, "Negotiating Complexity: Common Disease and Diverse Genomes", 2002-2005
- Invited Participant, National Academies Keck Futures Initiative conference on ‘The Genomic Revolution: Implications for Treatment and Control of Infectious Disease’, Irvine, CA, November 2005