Today’s Featured Question:
 
I am considering having genetic tests to see if I am predisposed to diseases such as Alzheimer’s or certain cancers. If I have an elevated risk, do I have to tell relatives they may have the same risk?
—K.K., San Jose, California

Answer:
 
Legally, no. Morally this may seem like a no-brainer, but sometimes people are reluctant to inform relatives from whom they are estranged or have never met, or children who may not be old enough to understand. In some cases a relative may not want to know. It also depends on the results. With a single-gene condition, you would probably cast a wider net; with multiple-gene conditions, it’s less likely anyone outside your immediate family would be affected, and the risks are more of an educated guess. Prior to testing, speak with a genetic counselor (search for one at nsgc.org) about who will be told of the results and how. Because genetics plays a role in nearly every disease, compile a family health history before your appointment to chart cancers, heart disease, diabetes, stroke, depression and other illnesses among your siblings, parents, aunts, uncles and grandparents. The U.S. Surgeon General provides a helpful tool at familyhistory.hhs.gov. The counselor will discuss why you are interested in testing, what you hope to find out, which tests you should take (useful because they can be expensive), what the results mean and what steps may lower your risk, e.g., regular screenings, medication, a change in diet. He or she will also encourage you to consider the emotional effect the results could have on you and your family. Federal law makes it illegal for insurers or employers to discriminate against anyone who has a genetic risk for a disease but no symptoms, which may encourage more people to be tested.

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Photograph by Stewart Smith