See this CBS News article: Want A Job In Akron? Hand Over Your DNA
The idea that GINA protects genetic tests from being held or used by employers and insurers is wrong. Genetic tests ordered by your doctor at any other time–when you are NOT seeking a job or insurance–can be collected and used by your employer and insurer to make decisions about you.
Lobbyists for the insurance industry and employers got this massive loophole into the bill, eliminating the intended consumer protections. Instead GINA should have forbidden employers and insurers to ever collect or access genetic tests.
This is one of the key reasons we need Congress to restore OUR rights to control our personal health information, so WE can make sure employers and insurers do not get our genetic records. Genetic information is so sensitive it should ONLY be seen by health professionals directly involved in our treatment, or if we choose to participate in research and share it.