Genetic Testing - Is It Right for YOU? (Part II)

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
Ncsl.org/IssuesResearch/Health/GeneticPrivacyLaws; usaweekend.com

Genetic Testing - Is It Right For YOU? (Part I)

Sandy is a 52-year-old married mother of three. Her mother had cancer twice, losing the second battle earlier this year. Her younger brother recently beat cancer. Alzheimer’s runs on one side of her family and colon cancer runs on both sides of her family. Is she rushing out to get genetic testing to determine her own odds of having any of these diseases? “It is not for me at this time”, says Sandy. “I would worry and probably stress myself into being sick or an early grave, about when it was going to hit me if I knew something might be waiting in the wings.” Sandy knows early detection is best and chooses to be proactive in her health care.
Genetic testing involves taking a DNA sample of blood or tissue from a patient and having a scientist scan the DNA for mutated sequences. Cost of testing can range from hundreds of dollars to thousands of dollars, depending on the sizes of the genes and the number of mutations tested. Currently, there are more than 1,000 genetic tests available and some provide only an estimated risk for developing the disorder. For example, you can test for Emphysema (Alpha-1-antitrypsin deficiency), but only get an estimated risk for Alzheimer's. The problem with genetic testing results is that some people who carry a mutation may never develop the disease. It is believed the mutations may work together with other unknown mutations, or environmental factors to cause the disease. In essence, a “positive” result may never turn into a “positive” result.
The advantage of genetic testing is that it can identify people at high risk for conditions that may be preventable. Aggressive monitoring can turn fatal diseases into treatable ones.
But how will genetic testing affect our children or potential children? Tests can allow families to avoid having children with devastating diseases. Sandy says her 18 year old diabetic daughter has already told her that she does not want to pass her disease on to her children, so she will adopt. She also has a cousin who had twins and wanted to see what the chances were that it would happen again. The test was almost 100% positive that she would have a second set of twins. They stopped with the first set and were very happy. Sandy’s husband also has a strong family history of Alzheimer’s, causing their children to have history from both parents. “Now my kids will have to decide what to do about this knowledge.”

* Names have been changed for privacy
Source: ornl.gov/sci/techresources/human_genome/medicine/genetest.shtml