In part one, Sandy talked about her position on genetic testing and why she would not consider it at this time. But lets assume you have decided that you need to know if you are predisposed to a disease. Lets say that for example, you have been told you carry a high potential of developing breast cancer. Now what?
If you go through your doctor, this information is now in your medical records. But who has access to it? Obviously, you now know that you need to be very diligent about getting tested. But will your insurance provider cover these tests? Do you need to disclose your genetic results to your insurance for the tests to be covered? What about life insurance? Are you now less likely to get a medical or life insurance policy? If you don’t actually have the disease, should you have to disclose this information?
We are still in murky waters as far as regulation of genetic information. As of March 2008, the National Conference of State Legislatures shows that only 27 states require consent to disclose genetic information. Seven states require consent to obtain/access genetic information and only 5 states define genetic information as personal property. If there is an information violation, only 19 states have specific penalties for genetic privacy violations.
In May of 2008, The Genetic Information Nondiscrimation Act of 2008 (GINA) was enacted, which prohibits the improper use of genetic information in health insurance and employment. It prohibits health plans and insurers from denying a healthy person coverage, or charging higher premiums. Employers are prohibited from using genetic information when making employment or employee decisions.
One option to keep your results private is Direct-to-Consumer (DTC) Genetic Testing. Doctors acquire the permission of the patient and order the desired test, but you don’t technically go through a health care professional. The risk involved with DTC testing is the possibility of misreading test results. Also, critics argue DTC has unregulated advertising and marketing claims and overall lack of governmental oversight. There are hundreds of tests available but the FDA has not yet officially substantiated the claimed accuracy of the majority of DTC genetic tests.
What do you do if your health insurer drops you? First, appeal the decision. Every insurer has an appeals process. Second, call the state regulator. Each state insurance department has a consumer complaint hotline or help line. To find your state’s office, go to naic.org. Last, consider hiring help. Ask your doctor’s office for a referral to a health care advocate. Be sure to ask for fees and referrals up front.
* Names have been changed for privacy
Source: wikipedia.org/wiki/genetic_testing & Genetic_Information_Nondiscrimination_Act