This jointly supported NIEHS/NHGRI virtual workshop was meant to explore ethical, legal, and social implications (ELSI) in research endeavors related to gene-environment interaction (GxE) and genetic susceptibility to environmental exposures. For the purposes of this workshop, GxE research refers broadly to studies exploring the varying effect of an environmental exposure (s) depending on genetic background of an individual or the stimulation of a gene variant (s) to cause disease or dysfunction only under certain environmental conditions. As funding for more biomedical and behavioral research to explore those interactions increases, potentially novel ELSI issues are rapidly emerging.

The workshop focussed on four issue areas:

• Complexities of conveying individual and community-level findings and risks from GxE research.
• Approaches to collaborate with communities in GxE research, to address community concerns and leverage findings from research merging exposure data with genomics data.
• Potential stigmas, discrimination, and privacy issues associated with the combined use of genomic, GIS, and other identifying data, and with the identification of subpopulations at disease risk due to genetic susceptibility to environmental exposures.
• Unique sensitivities related to environmental justice and health disparities associated with the identification of vulnerable or higher-risk populations in a GxE study (e.g., where individuals are living in geographic areas linked to high exposures to environmental pollutants).

As NIH begins to fund more studies of GxE interactions and genetic susceptibility to environmental exposures, there is a need to develop a framework to ensure that NIH and its GxE researchers understand and address unique issues that arise from this work.

Meeting participants were encouraged to use “#ELSI_GxE” for social media posts (Twitter, Instagram, Facebook, etc.).

Workshop Goals

The workshop brings a wide range of disciplines and expertise to inform NIH on a variety of ELSI topics relevant to GxE studies, including:

• Identification of ELSI findings and practices that might be ready for implementation in GxE research.
• Exploration of GxE research areas that are priorities for additional ELSI research support.
• Establishment of a framework for GxE and ELSI guidelines that would shape NIH funding announcements for population-based studies going forward.

Presentations

Introductory Remarks

• Rick Woychik, Ph.D. (1MB), Director, National Institute of Environmental Health Sciences
• Eric Green, Ph.D. (2MB), Director, National Human Genome Research Institute

Charge of the Meeting

• Dave Kaufman, Ph.D. (744KB), Program Director, NHGRI and Kim McAllister, Ph.D. (744KB), Program Director, NIEHS

Communicating Risks and Findings From GxE Research

• Julia Brody, Ph.D., Silent Spring Institute, “What Can GXE Studies Learn From Personalized Report-back for Chemical Exposures? (2MB)”
• S. Malia Fullerton, D.Phil., University of Washington Medicine, “Communicating Results in GXE Research: Lessons From Genomics Return of Results Policies and Practice (1MB)”

Community Research

• Johnnye Lewis, Ph.D., University of New Mexico, “When Place Identifies People. Can Causes of Disparities Be Identified Without Creating New Risks? Data Sovereignty and Privacy in the Age of Big Data (1MB)”
• Ana Navas-Acien, M.D., Ph.D., Columbia University, “Environmental Justice and GXE Research: Experiences From Working With Indigenous Communities (8MB)”

Social and Environmental Justice

• Karriem Watson, D.H.Sc., All of Us Research Program, “Diversity, Equity and Inclusion, and Intersectionality in Genomics Research (846KB)”

Privacy Issues and Discrimination

• Cole Brokamp, Ph.D., Cincinnati Children’s Hospital Medical Center, “Challenges and Solutions for Private and Reproducible Environmental Exposure Assessment at Scale (828KB)”
• Anya Prince, J.D., University of Iowa, “Current Legal Protections and Gaps in Genetic Antidiscrimination Law (2MB)”

Questions?

For questions about meeting content please contact Kimberly McAllister, 984-287-3287.

Program Contact

Kimberly McAllister, Ph.D.
Health Scientist Administrator

Tel 984-287-3287
Fax 919-316-4606
[email protected]

Dave Kaufman
Program Director, Division of Genomics and Society

Tel 301-594-6907
Fax 301-402-1950
[email protected]