Employee perk or privacy hazard? NIH funds JAX-co-led study to explore the ethical, legal, social, policy implications.
More than 157 million people in the U.S. receive their healthcare insurance through employer health plans. One potential means of enhancing employee health and lowering health care-related costs is genomic testing. Some employers are already offering voluntary workplace genomic testing through their health plans; others are considering adding this testing to their list of medical benefits.
The impacts of workplace genomic testing
More personal than your personnel file, your genome reveals what makes you a unique individual. But it’s also a catalog of the genetic variants that may raise or lower your risk for various diseases.
Consequently, says Charles Lee, Ph.D., FACMGThe study of structural genomic variation in human biology, evolution and disease.Charles Lee, Ph.D. , FACMG, professor and scientific director of The Jackson Laboratory (JAX) for Genomic Medicine, “workplace genomic testing raises substantial legal and policy concerns, including privacy of genetic information. Given that such testing is already occurring and that this testing will become even more prevalent in the future, there is an urgent need to understand its benefits and risks.”
Lee co-leads an interdisciplinary, multi-institution team that will be conducting an extensive study of the ethical, legal and social implications (ELSI) of workplace genomic testing in the U.S., under a new four-year grant totaling $3,375,665 from the National Human Genome Research Institute, one of the National Institutes of Health (NIH).
The new study on genetic and genomic testing
Where previous ELSI studies of genetic testing have focused on the negative consequences of results from genetic tests conducted as part of medical treatment for a specific disease or condition, this study addresses workplace genetic testing offered by employers and conducted by third-party genomic testing companies for preventive health as a benefit to employees. Such testing warrants an unbiased assessment of existing, and potentially unique, ELSI, economic and policy issues.
Scott Roberts, Ph.D., professor of health behavior and health education at the University of Michigan School of Public Health, is an ELSI expert and a principal investigator of the grant. "Some employers are considering adding genomic testing to their health and wellness programs,” Roberts says, “given that providing personal genetic risk information could motivate health behaviors and inform disease prevention efforts. Yet such testing also raises many potential issues related to genetic privacy and concerns about discrimination and stigma.”
The research team will start by assessing the prevalence of genetic testing in diverse workplaces throughout the United States, followed by an analysis of employers’ attitudes and perspectives based on interviews of senior representatives of companies that either offer or decline to offer the testing. They will then survey employees to understand their interest in, or objections to, workplace genetic testing. As part of these survey efforts, they plan to examine employee responses to testing in collaboration with Thomas Jefferson Health, a large healthcare system based in Pennsylvania. More than 10,000 employees at Thomas Jefferson Health have already taken this employer-offered genetic test. There will also be opportunities to survey employees of other companies and institutions that are currently offering such testing.
“The findings from this study will reveal the prominent issues and stakeholder perspectives in an understudied area of genomic testing,” Lee says, “and provide the foundation for sound practice and policy options.”
Interdisciplinary research cooperation
Debra Mathews, Ph.D., assistant director for science programs at Johns Hopkins University’s Berman Institute of Bioethics and an associate professor in the Johns Hopkins School of Medicine’s genetic medicine department, is a collaborator on the new workplace genetic testing grant. Mathews has led ELSI discussions in the McKusick Short Course, an annual summer course in Bar Harbor that has been a collaborative course jointly run by JAX and The Johns Hopkins University for more than 60 years.
Another collaborator on this project is fellow bioethics expert Kayte Spector-Bagdady, J.D., assistant professor in the department of obstetrics and gynecology, and chief of the Research Ethics Service in the University of Michigan Medical School’s Center for Bioethics & Social Sciences.
The grant team also includes a family physician and human genetics researcher (W. Gregory Feero, M.D., Ph.D., on the faculty of Maine-Dartmouth Family Medicine Residency and a professor in the department of Community and Family Medicine at Dartmouth University’s Geisel School of Medicine); an oncologist with a research focus on inherited cancer risk assessment (Veda Giri, M.D., associate professor in medical oncology, cancer biology and urology at the Sidney Kimmel Cancer Center at Thomas Jefferson University); a specialist in genetic counseling and risk communication (Wendy Uhlmann, clinical professor of internal medicine and human genetics at the University of Michigan Medical School); and an expert on legal issues surrounding genetic discrimination, privacy rights and insurance coverage of genetic technologies (Anya Prince, J.D., associate professor of law at the University of Iowa).
The multidisciplinary advisory board for the project comprises Kyle Brothers, M.D., Ph.D., of the Department of Pediatrics at the University of Louisville and Aaron Goldenberg, Ph.D., MPH, of Case Western Reserve University for bioethics; Ellen Wright Clayton, M.D., J.D., of the Vanderbilt University Law School for law and genomic privacy; Paul Han, M.D., M.A., MPH, of Maine Medical Center Research Institute for outcomes research and evaluation; Cynthia Casson Morton, Ph.D., of Harvard Medical School and Brigham and Women’s Hospital; and from JAX Tom Ellis, MBA, CCP, PHR for human resources and employee benefits, Jens Rueter, M.D., for population genomic screening, and Brett Witham, J.D., for legal issues.
Ethical, Legal, Social, and Policy Implications of Workplace Genomic Testing, National Human Genome Research Institute, grant number 1R01HG010679-01A1