BA 1971, Chinese Language and Literature, Oberlin College
MA 1977, PhD 1982, Sociology, University of Michigan
Gail E. Henderson, PhD, is professor of Social Medicine in the School of Medicine and adjunct professor of Sociology at the University of North Carolina at Chapel Hill. A medical sociologist with training in public health, she has extensive experience with interdisciplinary research and teaching. She was Department Chair from 2009 to 2015, Director of the UNC Center for Genomics and Society (CGS) from 2007-2019, and co-Director of the Center for AIDS Research (CFAR) International Core from 2004-2014. Henderson was the Ethical, Legal and Social Implications (ELSI) Editor of the journal, Genetics in Medicine, from 2009-2017, and was a Member of the National Human Genome Research Institute (NHGRI) Advisory Council from 2016-2019. Her research focuses on these areas:
Dilemmas raised by early phase clinical trials. In 1999, Henderson was funded by NHGRI’s ELSI Program to investigate perceptions of benefit from early phase gene transfer (“gene therapy”) trials by participants, investigators, and IRBs. Analysis revealed a complex set of associations, including individual- and trial-level factors, communication by investigators, and language used in consent forms. Subsequently, her research group convened a consensus conference to develop an agreed-upon definition of “therapeutic misconception.” Drawing on this research, and building on an interdisciplinary R01 on the social and ethical implications of an HIV cure, Henderson launched a longitudinal decision-making study of individuals invited to join early phase HIV cure trials in Thailand (NIAID, 2016-2020).
Oversight of biobanks and specimen sharing. Ethical challenges raised by large-scale specimen collection, storage, and sharing include informed consent for future, unspecified uses, identifiability, making the best use of stored specimens, and ownership. Using an organizational sciences framework, in 2012 her team conducted case studies of six biobanks and a national survey of U.S. biobank managers. Publications described stewardship of biobank specimens.
Preventive Genomic Screening. In 2007, Henderson became PI of a 5-year NHGRI Center grant at UNC, with 18 co-investigators, focusing on the ELSI of large scale genomic studies. She was co-PI of NCGENES (North Carolina Clinical Genomic Evaluation by NextGen Exome Sequencing), part of the NHGRI-funded Clinical Sequencing Exploratory Research consortium (2011-2015). In 2013 the Center was renewed for another five years, with a study of the harms and benefits of screening asymptomatic adults for rare, medically actionable variants. This preventive screening project, called “GeneScreen,” built upon clinical sequencing applications to patient populations, allowing investigation of a commercial as well as public health trend. Currently GeneScreen is expanding to the UNC Health Care System as a clinical offering of 3 medically actionable genetic conditions, and she and her team continue to study the ELSI implications.
Race/ethnicity and genomics. Henderson’s focus on this topic began with a survey in the mid-2000s of participants in a case-control study of colorectal cancer in blacks and whites in North Carolina, to determine their perceptions of genetic research and the collection of genetic data. These were among the first published data to explore attitudes toward genetic variation research by individuals who had participated in such research. Results from this survey influenced the focus on race/ethnicity in both NCGENES and GeneScreen.
Global health, HIV/AIDS, and research ethics. Henderson’s research on health care in China has spanned three decades. In 1984, she co-authored The Chinese Hospital, and in 1989 was co-investigator on the NICHD-funded China Health and Nutrition Survey. She served as a consultant to the China CDC National Center for AIDS Prevention and Control, and the Malawi National Health Research Council, organizing ethics and IRB training workshops, which were foundations for her work with the UNC CFAR. In 2007, her work on the social aspects of HIV/AIDS in China was extended through an NICHD R24, “Partnership for Social Science Research on HIV/AIDS in China,” in which she collaborated with Peoples University of China and the Nanjing National Center for STD Control, and produced a special issue of AIDS and Behavior in 2014. Her decision-making study for HIV cure trials in Bangkok addresses ethical issues raised by high risk, low benefit clinical research in a global context.