A House bill that would allow wellness programs access to genetic data would create problems for a precision medicine initiative that aims to voluntarily collect health information from 1 million people.
H.R. 1313, the Preserving Employee Wellness Programs Act, has already been widely criticized for allowing employers to punish employees who don’t participate in wellness programs. The bill aims to recalibrate two existing laws—the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act—and broaden the amount of information that employers could collect through wellness programs.
That has implications for major precision medicine research efforts that rely on patients to share genetic data, two researchers with Hudson Works LLC and the Kaiser Family Foundation who formally worked at the National Institutes of Health (NIH) and the Department of Health and Human Services (HHS) wrote in the New England Journal of Medicine. In particular, NIH's All of Us Research Program could run into significant barriers if patients are reluctant to share personal information out of fear that it will be used against them by their employer.
“Under H.R. 1313, employers could ask employees to disclose their research information to wellness programs—and penalize them for refusing,” the authors wrote. “This possibility would have to be disclosed to prospective All of Us participants and might dissuade many otherwise eager and altruistic volunteers. Fear of discrimination could discourage people from getting tests that could save their lives and from participating in research that could lead to future cures.”
In March, the senior counsel for The Johns Hopkins Hospital and Health System raised broader concerns about how privacy issues could present a significant barrier to precision medicine research.
The bill comes at a time when genetic data is becoming increasingly valuable. In a separate perspective authored by members of the Clinical Cancer Genome Task Team at the Global Alliance for Genomics and Health noted that precision oncology efforts, like the Cancer Moonshot Initiative, rely on robust data sharing on a global scale.
The group added that patients are generally eager to share their health data to advance cancer research, but technical, ethical and privacy barriers still stand in the way of a global data-sharing ecosystem.