Sacrificing Privacy in the Name of Wellness

Are new rules for corporate wellness programs sacrificing privacy in the name of wellness? A growing number of advocates for people living with chronic diseases are raising this concern about a proposal from the Equal Employment Opportunity Commission (EEOC). The proposed rules would relax requirements intended to protect employees from being compelled to disclose sensitive health information to their employers that is not work related.

Previously, the EEOC has held that federal laws like the Americans with Disabilities Act (ADA) mean that any collection of sensitive health information by an employer has to be strictly voluntary. The new rules essentially drop that standard, so long as the wellness program conforms to requirements in the Affordable Care Act. Public comments on these new rules are due by Friday.

Writing in US News & World Report, Michelle Du Mooy of the Consumer Privacy Project at the Center for Democracy & Technology describes the concerns:

Beyond the question of incentives and penalties, wellness programs have raised significant privacy concerns. Health data about employees is often gathered through health risk assessments that ask in-depth personal information such as pregnancy status, state of mental health, and, in some instances, even more sensitive information such as whether someone is sexually active.

Already, the issue of privacy is a top reason that employees don’t participate in corporate wellness programs. A study by HealthMine, a provider of such programs, found that awareness and convenience factors were the only issues that present a greater barrier than privacy concerns.

In a new book about increasingly invasive corporate wellness programs — The Wellness Syndrome — Andre Spicer and Carl Cederström describe unintended consequences of such programs. They quote employees of Scania, which has a particularly invasive wellness program, as telling them:

I have to exercise or else I’m not going to be seen as an attractive employee. I’m not going to just be a bad person, but an unemployable person.

Should your employer be monitoring your fitness tracker? The Cleveland Clinic does so for its employees. And they also don’t hire people who smoke. Zipongo offers to help employees keep track of grocery purchases.

It’s definitely cheaper to provide health insurance for employees who don’t have chronic diseases. Before the Affordable Care Act, people with chronic diseases worried about being uninsurable. Will they soon have to worry about being unemployable?

These are the questions that are worrying advocates for people living with chronic diseases.

Click here to read more from the Kaiser Family Foundation, here to read more from BloombergBusiness, and here to read more from De Mooy.

Private, photograph © Richard Holt / flickr

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