It is no secret that health care costs for employers and their employees are out of control. Many employers have attempted to hold down these rising costs by offering wellness-program incentives. The EEOC has signed off on these programs as legal as long as employee participation remains voluntary, which the agency defines as financial incentives for employee participation at or below 30 percent of the cost of coverage. Thus, employees have a choice—participate in the wellness program, or pay a surcharge of up to 30 percent.

One area that has remained off limits for employers under these wellness programs, however, has been genetic testing and other personal and family medical histories. A new bill moving through the House of Representatives, however, aims to change that.
 
HR 1313—the Preserving Employee Wellness Programs Act [pdf]—seeks to clarify exactly how much personal health data employers can ask their employees to disclose as part of a wellness program, including personal and family medical histories.

Currently, under both the ADA and GINA, employers cannot ask employees about their own personal medical histories and those of their family members as a pre-condition to participation in a wellness program. All employers can do is access anonymous aggregated data collected via wellness programs.

HR 1313 would amend the law to allow employers to ask an employee for his or her personal and family medical histories (which could include historical genetic testing). The disclosure remains voluntary, because an employee could always refuse to disclose and pay the EEOC’s 30 percent surcharge to retain coverage.

This bill is scary. I am admittedly biased on this issue, as my family medical history has a big genetic piece. While I don’t hide Donovan’s Noonan Syndome, I also don’t want to face the Hobson’s choice of disclosing it to my, or my wife’s, employer or paying significantly more for our medical insurance.

Yes, health care and health insurance costs in the country are a big problem. And we must do something to fix it. I do not have the solution (health care is so complicated). I am confident, however, that whatever that solution is, it is not asking employees to sacrifice this amount of personal privacy in exchange for lower insurance premiums.

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