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Interview: Genetic Testing for Huntington’s Disease, and a Very Personal Decision

By Nazin Sedehi and Laura Rivard

Introduction

A few months ago, we posted a case study on our Nature Scitable site about “Scott”, a man who tests positive for the genetic mutation that causes Huntington’s disease (HD). Soon after receiving his test results, Scott learns that his wife is pregnant. He and his wife decide to seek genetic testing to determine the HD status of their unborn child. In our case study, the obstetrician treating Scott’s wife hesitates about testing a fetus for an adult onset disease and wonders about the autonomy of the child.

While our case study was hypothetical, Huntington’s is a real disease that affects real people. Kenneth Serbin, Ph.D., professor and chair of the Department of History at the University of San Diego, is gene positive for HD. Although our case study was first written prior to our meeting Dr. Serbin, it has striking parallels to his life experience. Dr. Serbin has graciously agreed to share his story with us in this compelling video interview. It is a poignant reminder that the issues we discuss at Genetics Generation are not merely academic.

We welcome comments and questions for Dr. Serbin.

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