Ethical Issues Emerge in Gene-Environment Interactions Research
Ethical, legal and social implications (ELSI) of researching how the environment interacts with human genetics were the subject of a virtual workshop cosponsored recently by NIEHS and NHGRI.
The purpose of the meeting was to discuss ELSI issues that will require greater attention as gene-environment interactions research expands, noted Dr. Dave Kaufman, a program director in NHGRI’s Division of Genomics and Society. He and Dr. Kimberly McAllister, a health scientist administrator in NIEHS’s Genes, Environment and Health Branch, organized and moderated the event.
ELSI topics discussed 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.
‘Increasingly Complex, Multifaceted’
“Our work is complicated,” said Dr. Rick Woychik, director of NIEHS and the National Toxicology Program. He noted that the environment includes not just chemicals and pollutants but also lifestyle factors, psychosocial stress, racism and socioeconomic disparities.
“We are interested in evaluating how all of these environmental exposures impact human health,” Woychik added.
Gene-environment interactions research promises better understanding of why individuals experience different biological responses to exposures, but such inquiry demands careful attention to issues that often go beyond the bench, according to Woychik.
“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.
That sentiment was echoed by NHGRI director Dr. Eric Green, whose institute emphasizes 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,” he said. “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 Findings, Diversifying Research
Gene-environment interactions research relies on individual- and community-level information about genetic characteristics and environmental exposures. That has led to calls for increased communication of findings 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 Dr. Julia Brody, executive director and senior scientist at Silent Spring Institute.
The need for greater diversity in study participant pools also was a major topic at the workshop.
Dr. Karriem Watson, chief engagement officer for the All of Us Research Program, noted that the initiative is collecting health, environmental and genomic information of a million or more U.S. residents, with a specific 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.”
Confidentiality, Discrimination Concerns
Anya Prince, a law professor at the University of Iowa, expressed concern about how definitions and current legal protections regarding genetic information vary from state to state.
The 2008 Genetic Information Nondiscrimination Act is a federal law that protects privacy concerning genetic information. However, state laws are not uniform and definitions differ.
In addition, private companies are rapidly collecting data on consumers, which creates a new set of future ELSI concerns, such as how information could be used in discriminatory ways, according to Prince.
“[Gene-environment] interactions research is broadening the scope of what we’re learning about, and until we limit what somebody can collect about us, the sky’s the limit on discrimination and privacy violations,” she said.
Kaufman noted that going forward, gene-environment interactions research will require balancing the interests of scientists and study participants; consideration of the time and resources necessary for community-based methods that build research based on stakeholder input; and incorporation of hypotheses that consider social determinants of health.