In the fall of 2010, as my brother was dying of colon cancer, I learned a terrifying secret. He also had Huntington’s disease, a horrific brain disorder that is passed down in families.
Suddenly, even as I was losing my cherished sibling, my childhood soulmate, I was also grappling with my own possible death. Because Huntington’s is purely genetic, I had a 50 percent chance of having the incurable disease. And if I carried the lethal gene, that meant my children could have it too.
Only days after I last saw him, he died at home on Christmas Eve.
Even as I was grieving, waiting to hear news of my brother’s memorial service, I needed to make a decision. I was living in fear, anxiety. My siblings and I were emailing each other, sharing information, trying to decide whether to get tested. Did I want to know I was going to die a slow horrible death?
Read the full, original story: On the perils of genetic testing