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What Genetic Testing Does (and Doesn’t) Mean for Your Risk

If you were at risk for developing an incurable illness or for passing one down to any children you might have, would you want to know? Advances in testing technology and medical research have now made it possible to find out if you are likely to develop a number of diseases and conditions.

Alzheimer’s disease, sickle cell anemia and certain cancers are among an estimated 4,000 diseases and conditions linked to genetic mutations. If any of these diseases run in your family, genetic testing may be able to provide more information.

However, before you decide to find out whether you may be genetically predisposed to something that cannot be prevented or may not have a cure, it’s important to understand what it means to have a genetic risk and how other factors can sometimes contribute to whether the condition develops.

Understanding Genetic Risk

Finding out you have a predisposition does not mean you will always develop that disease later in life. In most cases, it means your risk or chances of developing that disease are greater than someone without that predisposition. That risk may be quite low, meaning you are still unlikely to ever get sick or die from that illness. In many instances, you may be able to take steps such as adopting a better diet or stopping smoking to lower your chances of developing that disease. Your health care provider may be able to monitor you more closely to detect early signs of illness and institute early treatment.

Pitfalls of Genetic Testing

Just having genetic testing performed can be problematic. Some people may become very anxious about what might happen if they develop the disease and worry about it all the time. On the other hand, a negative test for a disease may lead people to assume that they don’t need to worry about their health and encourage them to continue smoking or following other poor health habits. It’s also important to know that even when carried out in a medical setting, test results are not guaranteed to remain private. They can affect your ability to purchase life, disability and long-term care insurance. Health insurance also doesn’t always cover genetic testing, which can cost more than $2000 depending on complexity.

Anyone considering genetic testing should thoroughly research both the condition and the test. They should also consult their personal health care provider and, if appropriate, seek the guidance of a genetic counselor.

Thanks to a recent ruling from the U.S. Food and Drug Administration (FDA), you can now test yourself at home to find out if you are predisposed for Alzheimer’s disease, Parkinson’s disease, Celiac disease and a number of other devastating conditions. At $199, these direct-to-consumer (DTC) tests are considerably cheaper and not as complex as those carried out in a medical setting. However, any results should still be discussed with your health care provider.

DTC tests are not a replacement for those that require a doctor’s order. Their purpose, according to the FDA, is that they may help consumers “make decisions about lifestyle choices or to inform discussions with a health care professional.”

[Janet Lubman Rathner]

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