Should You Tell Your Family When You Test Positive? 64 South Bay Accent When a DNA test result discloses that you are a carrier for a particular inherited disease, such as sickle cell anemia, Tay-Sachs disease or Wilson’s disease, should you let family members know? Absolutely, says a genetic counselor. This is one of the important ethical questions around DNA testing that Lisa Moss has encountered in her nine years as a licensed, Certified Genetic Counselor for Palo Alto Medical Foundation. She believes it’s important for people to understand the family issues before they get tested. “People should know that if you test positive, your siblings are now at risk, your children are at risk and you may have inadvertently disclosed that one of your parents has this genetic change,” she explains. “It’s important to talk to information had become so confusing for consumers and wanted to create a clear, targeted solution. “There are over 80,000 health products out there on the shelf, and the average consumer is getting bombarded with mixed messages,” says Maghsoodnia. “On any given day, you can read an article that says, ‘Everyone should be taking Vitamin D.’ Then you read another article that says, ‘Vitamin D increases your chance of cardiac arrest in certain genetic dispositions.’ So the consumer is extremely confused: Should I be taking it or shouldn’t I be taking it?” FROM TOP: SHUTTERSTOCK; COURTESY OF COUNSYL foods. It also uses genetic information to specify your optimal exercise program and vitamin regimen. “We are not doing what 23andMe is doing,” explains Maghsoodnia. “We don’t go into disease predispositions. We are very focused on wellness and nutrition, and trying to tell you what to do to stay healthy.” Maghsoodnia started the company because he believed in the value of the wellness perspective—a preventative model based in using DNA testing to maintain good health through personalized nutrition and fitness. He was also frustrated that the wellness your family to let them know you’re doing this. And it’s crucial to share your results with your family members.” Moss acknowledges that this isn’t always easy. In some cases, patients refuse to share the information with their family. In others, family members just don’t want to know, and patients are just honoring their wishes. But in Moss’s view, not telling family members leaves them at a disadvantage, because they could use the information to get tested themselves, make decisions on their own parenting choices and take the steps needed to protect their own health. “You can do this test for your own health,” says Moss, “but you need to recognize that it can impact many more people.” “IF A PATIENT LEARNS THAT THEY ARE AT AN INCREASED RISK OF DEVELOPING BREAST CANCER, WE WANT TO MAKE SURE THEY KNOW THEY’RE ELIGIBLE FOR EARLIER SCREENING, MORE FREQUENT MAMMOGRAMS AND OTHER PREVENTATIVE ACTIONS.” ‑ S H I V ANI NAZ ARETH, C OUNSYL
South Bay Accent - Apr/May 2017
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