Monday, March 13, 2017

Congress May Curtail GINA's Protection of Your Genetic Information

A law passed in 2008 called the Genetic Information Nondiscrimination Act (GINA) prohibits employers and health insurers from requiring you to submit to genetic testing as a condition of employment or to receive health insurance (see this blog, June 2, 2008).  It also prevents employers or health insurers from requiring you to answer questions about any previous DNA tests you may have had.  GINA was designed to prevent discrimination based on genetic information about your future health risks.  (Interestingly, GINA does not apply to life, disability, or long-term care insurance; see this blog, Apr. 17, 2014).

Now a bill introduced in the republication-controlled Congress is attempting to take away the protections written into GINA.  H.R. 1313 would allow employers to ask employees intrusive questions about the employee's health, as well as about the health and any genetic tests they or their family members have undergone in the past.  Although refusing to answer still can't be used against the employee in terms of employment, those who choose not to answer could be required to pay 30-50% more for their company-provided health insurance.  In effect, H.R. 1313 would require employees to choose between privacy of their genetic information and the cost of their health insurance.

By the way, the definition of "family member" used originally in GINA and adopted by H.R. 1313 goes way beyond just parents or children.  It extends to the fourth degree, meaning from great-great-grandparents to great-great-grandchildren, as well as generations of aunts, uncles, and cousins.  H.R. 1313 could potentially expose your extended family's entire genetic history, to the extent that it is known.

I'd be wary of agreeing to any genetic tests if this bill passes. You can't answer what you don't know.

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