About

Gail E. Henderson, PhD, is a professor of Social Medicine in the School of Medicine and an adjunct professor of Sociology at the University of North Carolina at Chapel Hill. She is a medical sociologist with training in public health, and has extensive experience with interdisciplinary research and teaching. Her research focuses on ethical, social, and policy issues related to genomics, clinical trials, biobanking, and global health, particularly in the context of HIV/AIDS and health care in China. Henderson has contributed to understanding perceptions of benefit in early phase gene transfer trials, the ethical challenges of large-scale biobanks, and the implications of genomic screening, including race/ethnicity considerations. She has also conducted significant work on health care systems and research ethics in China and other global health contexts. Her leadership roles include serving as Department Chair, director of the UNC Center for Genomics and Society, and co-director of the Center for AIDS Research International Core. She has been involved in editorial and advisory capacities, including as the Ethical, Legal and Social Implications (ELSI) Editor of Genetics in Medicine and a member of the NHGRI Advisory Council.

Research topics

• Political Science
• Public relations
• Sociology
• Biology
• Genetics
• Business
• Computer Science
• Psychology
• Law
• Engineering ethics
• Medicine
• Data science
• Environmental health
• Public administration
• Social psychology
• Management
• Engineering
• Environmental ethics

Selected publications

• How people undergoing genomic sequencing interpret and react to varied secondary findings with limited actionability

  Personalized Medicine · 2025-03-04

  articleOpen access

  PURPOSE: To investigate patient reactions to and understanding of secondary genomic findings with limited to no medical actionability (LMA-SFs) from diagnostic genome sequencing. METHODS: = 43) also completed surveys to report their distress, decision regret, expected health anxiety, and whether and how they perceived results as reassuring or troubling. RESULTS: haplotype or monogenetic condition variants. None received results indicating high risk for severe neurological disease. Overall, participants (76.7% female, 97.7% White) had low distress, decision regret, and expected health anxiety. None described negative/normal findings as troubling. However, their interpretations of reportable/positive results varied. Even within the same result type, some participants found them troubling, while others found them reassuring based on their perception of the results' utility. CONCLUSION: Participants' short-term well-being was not reduced by receiving LMA-SFs. Their interpretations suggested varied personal utilities and the need for post-test resources to aid understanding of these types of results and their health significance.

  PublisherOA PDFDOI

• The public-private research ecosystem in the genome editing era

  UNC Libraries · 2025-01-28

  articleOpen access
  PublisherDOI

• Corrigendum to “HIV remission trial investigators’ attitudes towards risk and risk mitigation in trials that include treatment interruption” [J Virus Erad 9 (2) (June 2023) 100331]

  UNC Libraries · 2025-02-28

  erratumOpen access
  PublisherDOI

• Correction: Genomic knowledge in the context of diagnostic exome sequencing: changes over time, persistent subgroup differences, and associations with psychological sequencing outcomes

  UNC Libraries · 2025-08-09

  articleOpen access
  PublisherDOI

• A New Governance Approach to Regulating Human Genome Editing.

  North Carolina journal of law & technology · 2025 · 6 citations

  • Political Science
  • Political Science
  • Public relations

  For years, genomic medicine-medicine based on the growing understanding of the genetic contribution to many diseases and conditions-has been hailed as the future of medical treatment, but it has thus far had limited effect on day-to-day medical practice. The ultimate goal of genomic medicine has always been the ability not just to identify dangerous gene mutations, but to fix them. Now CRISPR and related genome-editing technologies may have the potential to provide a safe and effective way to repair dangerous mutations. In the wake of ethically dubious experiments with human embryos in China, the international governance of human genome editing is emerging as an urgent topic for scientists, regulators, and the public. Efforts to develop a governance model are underway at national and international levels. These efforts are the subject of multiple initiatives by national and international health and science organizations and are topics of discussion at scientific conferences, summits, and meetings. This Article reports on the Authors' multi-year, interdisciplinary project to identify and investigate the practical, ethical, and policy considerations that are emerging as the greatest concerns about human genome editing, and ultimately to develop policy options. The project involves monitoring the discussions of groups, both government-sponsored and private, that are considering how genome editing should be governed; observing conferences where the topic is discussed; analyzing emerging policy reports by national and international bodies; and interviewing a wide range of stakeholders, including scientists, ethicists, and those who make and comment on public policy. The Article identifies several stakeholder concerns that are especially prominent in the research to date and begins to explore the implications of these concerns for alternative models of governance. There are current indications that, for practical purposes, a focus on "soft," hybrid forms of governance based on networks of multiple public and private stakeholders may turn out to be the most promising course to pursue. The "new governance" paradigm developed in the corporate and financial sectors offers a useful model for understanding the dynamics of this approach.

  PublisherOA PDF

• The impact of the three major human genome editing reports on the governance landscape

  Journal of Community Genetics · 2025-06-16 · 2 citations

  articleOpen accessSenior author

  In 2018, the scientific community was shocked by news that a rogue scientist’s genome editing of embryos had resulted in the birth of twin girls in China. Three major international reports offering ethical and governance guidance on human genome editing (HGE) (by the National Academies’ and Royal Society’s International Commission, the WHO, and the European Group on Ethics) followed in 2020 and 2021. This paper examines whether and how the publication of these reports has had any discernible impact on the global governance landscape. We compare global laws and regulations before and after the reports’ issuance as well as the evolution of softer forms of governance, including funding standards and scientific norms. Data includes the three reports and interviews with people who participated in drafting them. Our analysis indicates that it is impossible to draw direct causal connections between the reports and subsequent legal reforms. In fact, very little has changed in the global legal landscape since they were issued. However, the reports, as well as the broader governance environment (both hard and soft law) reflect a widely shared set of scientific and moral values that have been evolving over the last decade. In that sense, the reports have played an important role in refining, ratifying, and publicizing those values. The weight accorded to the reports will make it near impossible for the scientific community and its governmental overseers to repudiate those values and will help to ensure that future scientific developments will be evaluated in their light.

  PublisherOA PDFDOI

• HIV remission trial investigators’ attitudes towards risk and risk mitigation in trials that include treatment interruption

  UNC Libraries · 2025-02-28

  articleOpen access
  PublisherDOI

• Is Enhancement the Price of Prevention in Human Gene Editing?

  UNC Libraries · 2025-02-26

  articleOpen access

  New gene-editing tools challenge conventional policy proscriptions of research aimed at either human germline gene editing or human enhancement by potentially lowering technical barriers to both kinds of intervention. Some recent gene-editing reports have begun to take up the prospect of germline editing, but most experts are in broad agreement that research should prioritize medical applications over attempts to enhance human traits. However, there is little consensus about what counts as human enhancement in this context, or how to deal with the issues it flags. Moreover, several influential reports interpret medical applications to include disease prevention as well as treatment as a goal for gene-editing research. This challenges the current policy consensus because using gene editing to prevent disease would incidentally facilitate human enhancement applications in a variety of ways. If such research efforts are penalized by policy concerns about enhancement, then their preventive health benefits could be lost. To avoid being caught off guard by such challenges, science policy makers will need to think more carefully about what "prevention" might mean in the gene-editing context, and develop research governance that can anticipate and address the human enhancement concerns it will raise. To accomplish the latter, the scope of policy making will need to expand from its narrow focus on human clinical trials to engage with basic researchers driving the translational pipeline toward preventive gene editing and the science policy makers who have to address its "off-label" uses.

  PublisherDOI

• Scientists' Views on Scientific Self-Governance for Human Genome Editing Research

  UNC Libraries · 2025-02-25

  articleOpen access1st authorCorresponding

  As research on human gene editing has grown, a variety of prominent international organizations are considering how best to govern such research. But what role do scientists engaged in genome editing think they should have in developing research governance? In this study, we present results from a survey of 212 U.S.-based scientists regarding views on human genome editing governance. Most did not believe that scientists should be allowed to self-govern human genome editing research. Open-ended responses revealed four main reasons: conflicts of interest, the inevitability of rare "bad apples," historical evidence to the contrary, and the limitations of scientific expertise. Analyses of open-ended responses also revealed scientists' views on how human gene editing research should be governed. These views emphasize interdisciplinary professional and public input. The study results illustrate a noteworthy shift in the scientific community's traditional vision of professional autonomy and can inform ongoing efforts to develop research governance approaches.

  PublisherDOI

• Is there evidence that we should screen the general population for Lynch syndrome with genetic testing? A systematic review

  UNC Libraries · 2025-02-07

  reviewOpen access

  BACKGROUND: The emerging dual imperatives of personalized medicine and technologic advances make population screening for preventable conditions resulting from genetic alterations a realistic possibility. Lynch syndrome is a potential screening target due to its prevalence, penetrance, and the availability of well-established, preventive interventions. However, while population screening may lower incidence of preventable conditions, implementation without evidence may lead to unintentional harms. We examined the literature to determine whether evidence exists that screening for Lynch-associated mismatch repair (MMR) gene mutations leads to improved overall survival, cancer-specific survival, or quality of life. Documenting evidence and gaps is critical to implementing genomic approaches in public health and guiding future research. MATERIALS AND METHODS: Our 2014-2015 systematic review identified studies comparing screening with no screening in the general population, and controlled studies assessing analytic validity of targeted next-generation sequencing, and benefits or harms of interventions or screening. We conducted meta-analyses for the association between early or more frequent colonoscopies and health outcomes. RESULTS: Twelve studies met our eligibility criteria. No adequate evidence directly addressed the main question or the harms of screening in the general population. Meta-analyses found relative reductions of 68% for colorectal cancer incidence (relative risk: 0.32, 95% confidence interval: 0.23-0.43, three cohort studies, 590 participants) and 78% for all-cause mortality (relative risk: 0.22, 95% confidence interval: 0.09-0.56, three cohort studies, 590 participants) for early or more frequent colonoscopies among family members of people with cancer who also had an associated MMR gene mutation. CONCLUSION: Inadequate evidence exists examining harms and benefits of population-based screening for Lynch syndrome. Lack of evidence highlights the need for data that directly compare benefits and harms.

  PublisherDOI

Recent grants

• North Carolina Clinical Genomic Evaluation by Next-gen Exome Sequencing 2

  NIH · $1.6M · 2011–2015

• NIH Grant R01HG005227

  NIH · $603k · 2012

• Integrating Decision Making Studies into HIV Cure Trials: A real-time longitudinal assessment

  NIH · $2.2M · 2016–2022

• NIH Grant P50HG004488

  NIH · $12.6M · 2019

• NIH Grant R24HD056670

  NIH · $1.9M · 2014

Frequent coauthors

• R. Jean Cadigan

  42 shared

• Nancy M. P. King

  Wake Forest University

  30 shared

• Arlene M. Davis

  University of North Carolina at Chapel Hill

  30 shared

• Larry R. Churchill

  Vanderbilt University Medical Center

  28 shared

• Benjamin S. Wilfond

  University of Washington

  27 shared

• Christine Rini

  24 shared

• Jonathan S. Berg

  University of North Carolina at Chapel Hill

  24 shared

• Myron S. Cohen

  23 shared

Education

• B.A., Chinese Language and Literature

  Oberlin College

  1971

• M.A.

  University of Michigan

  1977

• Ph.D., Sociology

  University of Michigan

  1982