One piece of paper that will change your life ... a test for Huntington’s disease. This book gives you a peek into the lives of the people who come for genetic testing and how they deal with the results.
A simple test with complicated effects on your life¶
People with a close blood relative with Huntington’s disease know what that illness can do … and know they are at risk of developing it themselves. Huntington’s disease (HD) affects movement, thinking, emotions and personality, with a slow but inexorable decline over the years after its symptoms first appear.
A simple genetic test can reveal whether family members carry the gene mutation that causes HD, but not everyone wants to know. And it’s complicated. What if you want to know but your identical twin—who shares your genes—doesn’t? What if you expect privacy, but your occupation puts others at risk if your cognitive status or reaction time declines?
The conversations before testing and the reactions after testing reveal human beings at our best and at our worst. Dr. Black has been an intimate participant in these moments over the past three decades at a major medical center’s presymptomatic HD testing service. Come along as he shows us humanity under the conditions of this … test of our mettle.