📋 Tender Overview
Employee perk or privacy hazard NIH funds JAX-co-led study to explore the ethical legal social policy implications.Media relationsContact the JAX Press Team to interview experts in mammalian genomics and human disease research arrange a visit to our facilities or get the data and images you need for your story.CONTACT USMore 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 its also a catalog of the genetic variants that may raise or lower your risk for various diseases.Consequently says 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 3375665 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 10000 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 Universitys Berman Institute of Bioethics and an associate professor in the Johns Hopkins School of Medicines 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 Schools 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 Universitys 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.
