After a layoff, is it risky to take a health test?
As genetic testing proliferates, a new federal law prohibits employers from asking for genetic information about you, or from using it to deny you coverage.
(Fortune) -- Dear Annie: I lost my job in a restructuring in early 2008, and have spent most of the time since then training for a new career. I'm still covered by COBRA, so I have health insurance now, but that will expire in a couple of months, so I'll have to go get my own insurance. My family has a history of Huntington's Disease - my father, grandfather, and an uncle all had it or have it now - and I would like to get the genetic test that shows whether I have the defective gene that causes this terrible illness. Knowing one way or the other would help me plan better for things like how much retirement income I might need to cope with extra medical expenses, or how heavily to invest in long-term care insurance. Here's my question: If I get the test and it comes out positive, can insurers turn me down for medical insurance? -Just James
Dear James: Your question is certainly a timely one. Millions of people have already undergone genetic testing for a variety of hereditary conditions, including breast cancer, colon cancer, Huntington's Disease, and, in expectant moms, Down's Syndrome. Research on the human genome is speeding along and will make many more choices widely available before long, including genetic tests for heart disease and diabetes.
Last spring, without much fanfare, Congress passed a law called GINA (for Genetic Information Nondiscrimination Act), scheduled to go into effect this year, that's designed to help people in your position. It prohibits health insurers from:
- Requesting or requiring that you (or a family member) take a genetic test.
- Asking whether you have ever had genetic testing.
- Requesting, requiring, or purchasing genetic information for underwriting purposes or prior to your enrollment in an insurance plan.
- Using or disclosing genetic information for the purpose of deciding whether to insure you or for setting the premium you pay.
GINA also bans employers and labor unions from taking certain actions as a result of genetic information. For instance, if you did take a test for Huntington's and it turned up positive, an employer who somehow found out about it couldn't legally refuse to hire or promote you because of it, nor could they pay you less than they would if your test had come out differently.
An earlier law known as HIPAA (for Health Insurance Portability and Accountability Act), passed in 1996, already protected employees enrolled in group health plans from having their genes held against them. But HIPAA didn't specifically address the plight of people who are not covered by a group plan.
"GINA closes a gap that HIPAA left open. The people it will really help are those who have lost their jobs and must seek individual coverage," notes Joanne Hustead, a senior health compliance specialist at the Segal Company (www.segalco.com), an employee-benefits and human resources consulting firm. "Lots of people spend their careers going back and forth between group and individual insurance, with COBRA in between. For them, these are important protections."
Hustead adds that GINA also strengthens the genetic-information provisions of HIPAA for people in group plans. For example, the newer law prohibits insurers from raising premiums or contributions for a whole group based on genetic information about any member of the group. GINA also has teeth that HIPAA lacked: The newer law gives the U.S. Department of Labor the authority to impose fines on employers whose insurance plans violate the genetic confidentiality provisions of HIPAA or GINA. The fines can be as high as $100 per day for each participant in a group plan, which in a large company can quickly add up to a hefty sum.
For group policies, GINA starts to kick in at the start of any plan year beginning or renewing after May 21. (For a company whose insurance plan is on a July 1 enrollment year, for instance, GINA takes effect July 1, 2009.) For non-group policies, such as you will be getting when your COBRA runs out, GINA takes effect May 21 and applies to all individual policies - even those that were already purchased and in effect before May 21. You may want to get tested for the Huntington's gene on or after May 22, just to be absolutely sure that GINA covers you. Here's hoping your test results show you don't need GINA at all.
Want more information about how GINA applies to specific situations, and how it interacts with state laws that also prohibit discrimination based on your genes? For an exhaustive list of FAQs, visit the Genetics & Public Policy Center website of Johns Hopkins University.
Readers, what do you say? Are you worried about losing your health insurance if you lose your job? If you've already lost group coverage because of a layoff, have you been able to find an affordable replacement? Are you more likely to get genetic testing if you know the results wouldn't hurt your insurability? Are you worried an employer wouldn't hire you based on genetic test results? Tell us on the Ask Annie blog.