The ethical, legal, and sociological implications of studying how the environment interacts to human genetics were examined The subject of a virtual workshopCo-sponsored with NIEHS and The National Human Genome Research Institute (NHGRI) Jan. 11-12.
The meeting’s purpose was to discuss ELSI topics that will need greater attention as research on gene-environment interactions expands. Dave Kaufman, Ph.D., a program director in NHGRI Division of Genomics and Society. He and Kimberly McAllister Ph.D., a NIEHS health scientist administrator Genes, Environment, and Health BranchThe event was organized by and moderated by.
ELSI topics discussed at the workshop included collection, analysis, and sharing of environmental and genomic research data; unique concerns of vulnerable populations disproportionately affected by environmental exposures; and potential legal and privacy issues that arise when individuals’ identities are linked to genomic and exposure data.
Complex and multifaceted
“Our work is complicated,” said NIEHS and National Toxicology Program Director Rick Woychik, Ph.D.Noting that the environment encompasses not only chemicals and pollutants, but also lifestyle factors such as psychosocial stress, racism, or socioeconomic disparities, “We are interested in evaluating how all of these environmental exposures impact human health.”
Woychik states that while gene-environment interactions research promises to provide better understanding of how individuals respond to exposures, it also requires careful attention, Woychik says.
“The ethical, legal, and social issues related to gene-by-environment interactions research — and the implications of this research — are increasingly complex and multifaceted,” he said.
NHGRI Director also echoed that sentiment Eric Green, M.D.He also pointed out that the institute stresses responsible data stewardship, and consideration of ELSI.
“It’s an opportune time with respect to the science and exciting technological advances that might provide us [with] more robust approaches for dissecting the interactions of genetic influences and environmental influences,” said Green. “We know that we must incorporate the environmental factors that lie on the same causal pathways as genomic determinants, and we have learned that as genomics grows, new issues and implications arise.”
Sharing your findings and ideas with communities
Research on gene-environment interactions relies on individual and community-level information about genetic traits and environmental exposures. This has led to increased communication with study participants.
“This has created new responsibilities for researchers to report back to people to help them use this information to learn about their environmental health risks and have the opportunity to modify [environmental] exposures,” said Julia Brody, Ph.D., executive director and senior scientist at Silent Spring Institute.
A National Academy of Sciences, Engineering, and Medicine2018 report concluded that it is important to share research results with communities and participants in all circumstances. This will promote transparency, trust, mutual benefit, and trust.
Communication of study results in a proper manner requires consideration of the entire research to policy translational system. Katrina Korfmacher (Ph.D.), University of Rochester Medical Center.
“The first question I always ask is ‘So what?’” she said. “How can we best share research results with everyone — from individuals to policymakers — in a way that will enhance their capacity to address the root causes of environmental exposures and inequities?”
Diversifying research enterprises
Workshop participants were also encouraged to discuss the need for greater diversity among study participant pools.
Karriem Watson D.H.Sc.Chief Engagement Officer at the National Institutes of Health All of UsResearch Program noted that the initiative collects health, environmental, genomic, and genomic data from 1 million or more U.S residents with a focus on diversity, equity and inclusion.
“It is so important for us to think about the fact that we are building one of the nation’s largest cohort studies,” Watson said. “Early on, we wanted our participants to reflect the diversity of the U.S., and we have been intentional to engage stakeholders as partners to ensure community-engaged principles of ethical inclusion.”
Kaufman stated that gene-environment interactions research requires balancing the interests and needs of scientists and participants. It also requires consideration of the time and resources required for community-based research methods that are based on stakeholder input. It is also necessary to consider hypotheses that take into account social determinants.
(Jennifer Harker Ph.D. is a technical writer/editor in NIEHS Office of Communications and Public Liaison.