When I worked at Microsoft a number of years ago as a marketing manager, employees were offered an annual wellness check-up that was really great.  On specific days each year, employees could get a basic health evaluation on site at our workplace that could then be used—if follow-up was needed—with our regular physician or a specialist. At the time, I had no concern about how the information that came out of that examination would be used…perhaps I would have felt differently had it uncovered something medically serious.  Nonetheless, the exam was at no cost to me, and Microsoft touted this as part of its efforts to keep its employees healthier.  I know that other employers have extensive wellness programs ongoing now and this partnership between employer and employees is terrific.  But I get really nervous when the depth and breadth of data that is collected on individuals reaches well beyond high blood pressure or weight issues that can be documented as “manageable” in collaboration with medical professionals.

The bill, Preserving Employee Wellness Programs Act, HR 1313, was introduced recently by Rep. Virginia Foxx, (R-N.C.), who chairs the Committee on Education and the Workforce. According to a Washington Post article this week “The average annual premium for employer-sponsored family health coverage in 2016 was $18,142, according to the Kaiser Family Foundation. Under the plan proposed in the bill, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.”  I have read the actual bill and it is, frankly, difficult to clearly understand the total impact of this amidst the “legalese,” but I fundamentally believe that employer access to genetic details is far beyond what might be reasonable to gather in the context of an employer-based wellness program, and employees have a fundamental right to personal medical data privacy and should not be penalized for keeping it private.

If the idea behind employer-sponsored wellness programs is to encourage good lifestyle choices and/or to provide tools and resources to make behavior changes that will keep employees healthy and able to do their best work—I am all for that.  But genetic profiling is the very latest frontier in medical science—and frankly, it is still in its infancy as far as its broad usefulness in early disease detection, appropriate and effective treatment, and projection of medical outcomes.   There are many genetic markers that even the most advanced researchers have not yet determined the significance of, and in the hands of employers the chance of misinterpretation and misuse is gravely possible.

If an employee wishes to share this—or any other personal medical data - with their employer, no problem.  And certainly it is an employee’s responsibility to be honest with their employer should a medical condition arise that would impact the employee’s ability in the near term to perform required duties.  But beyond that implicit agreement, the requirement to share genetic data or be penalized—whether by not being able to take advantage of special benefits or being surcharged for declining to share—is totally unacceptable.  

This is a clear example of the kind of legislation that our current administration is trying to implement in the guise of “preserving employee wellness”—I think we as individuals would pay too high a cost in loss of privacy to let this bill go unprotested.

I welcome your comments—reach me at esther@patientpower.info

Esther Schorr| Co-Founder and Chief Operating Officer | Patient Power LLC


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.