Test results
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Test results

The human side of presymptomatic testing

About the Book

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 quarter century at the HD presymptomatic testing service at a major medical center. Come along as he shows us humanity under the conditions of this … test of our mettle.

About the Author

Kevin J. Black
Kevin J. Black, M.D.

Kevin J. Black, M.D., is a neuroscientist and movement disorders neuropsychiatrist at Washington University School of Medicine in St. Louis, Missouri. For more than 25 years he has been the co-director of the presymptomatic testing service at the Washington University School of Medicine in St. Louis, Missouri.

Table of Contents

  • Preface
    • Why we want to tell these stories
    • Who’s “we”?
    • Confidentiality
    • Thank you …
  • Permissions
  • Introduction
  • “Your test is negative.”
  • Wait, where’s the rest of this book?
  • Resources on HD
  • Notes

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