(USA Today) Genetic testing for disease: The need to know

Children have a 50-50 chance of inheriting the rare [Huntington’s] disease from their parents. Kristen Powers told USA TODAY in April that she would want to be honest about her diagnosis with future partners and would not have children for fear of passing on the gene. She said she wants to raise awareness about an illness many families try to hide.

One way she’s doing that is by making a documentary. She has raised more than $18,000 on crowd-funding website Indiegogo to hire a video crew to document her experiences with genetic testing.

“She is going to empower an entire generation at risk of developing Huntington’s disease,” says Mary Edmondson, a psychiatrist at Duke University’s specialty Huntington’s disease clinic. “The more you can do to empower people, the more they can master the skills required to deal with the disease.”

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