Issue link: https://tmcpulse.uberflip.com/i/1089662
t m c » p u l s e | m a r c h 2 0 1 9 10 Those questions have hovered over genetics for decades, especially with regard to children. The World Health Organization published a paper in 1998 stating that genetic tests should be offered in such a way that individuals and families had a say in how—or if—they learned the results, and that children should only be tested in the context of advancing their medical care. To date, the consensus in the field remains that children have a "right to an open future," to borrow a phrase from philosopher and ethicist Joel Feinberg, and should be protected from having others make important life choices for them before they are mature enough to make those choices for themselves. It becomes even more complicated, McGuire noted, when parents order direct-to-consumer genetic tests for their children. While most com- panies state that their tests are intended for adults, there is nothing to prevent parents from ordering the test, collecting a sample from their child and sending it off. There are some diseases that experts say should remain wholly exempt from over-the-counter genetic testing, such as Huntington's disease. For many diseases, genetics can hint at a predisposition or risk, but the presence of a single abnormal gene associated with Huntington's, a heritable and fatal neurological illness, indicates a diagnosis. "Many people do not want to know if they're going to get Huntington's," McGuire said, "and it's hard to test a family member when another family member doesn't want to know. We had an interest- ing case at Baylor years ago where somebody came in whose father had Huntington's, but he didn't want to know his own status. His wife was pregnant and they wanted to do the prenatal testing to see if the fetus was positive, but first we had to explain to the individual that if the fetus was positive, he was definitely positive." Presently, no direct-to-consumer genetic tests offer screening for Huntington's, in part because of When I first started doing this work over 10 years ago, one of the things that I wrote about was the potential to form a genetic identity—that we might have some sort of identity tied to our genetic information the way we do to, say, our race or culture or gender or religion. As we see genetic testing becoming more widespread ... the possibility of a genetic identity is becoming something that's very real. — JESSICA ROBERTS, J.D. Director of the Health Law & Policy Institute at the University of Houston