Telling Genes: The Story of Genetic Counseling in America

Telling Genes: The Story of Genetic Counseling in America

by Alexandra Minna Stern
Pub. Date:
Johns Hopkins University Press
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Telling Genes: The Story of Genetic Counseling in America

For sixty years genetic counselors have served as the messengers of important information about the risks, realities, and perceptions of genetic conditions. More than 2,500 certified genetic counselors in the United States work in clinics, community and teaching hospitals, public health departments, private biotech companies, and universities. Telling Genes considers the purpose of genetic counseling for twenty-first century families and society and places the field into its historical context.

Genetic counselors educate physicians, scientific researchers, and prospective parents about the role of genetics in inherited disease. They are responsible for reliably translating test results and technical data for a diverse clientele, using scientific acumen and human empathy to help people make informed decisions about genomic medicine.

Alexandra Minna Stern traces the development of genetic counseling from the eugenics movement of the early twentieth century to the current era of human genomics. Drawing from archival records, patient files, and oral histories, Stern presents the fascinating story of the growth of genetic counseling practices, principles, and professionals.

Product Details

ISBN-13: 9781421406688
Publisher: Johns Hopkins University Press
Publication date: 09/30/2012
Pages: 248
Product dimensions: 5.90(w) x 8.90(h) x 0.70(d)

Table of Contents

Acknowledgments vii

Introduction 1

1 History: Genetic Counseling Develops 7

2 Genetic Risk: An Evolving Calculus 28

3 Race: Tense and Troubled Relations 53

4 Disability: The Dynamics of Difference 75

5 Women: Transforming Genetic Counseling 102

6 Ethics: Shades of Gray in Genetic Counseling 123

7 Prenatal Diagnosis: The Handmaiden of Contemporary Genetic Counseling 146

Conclusion 170


A Archival Materials Consulted 177

B Interviewees 179

C Master's Degree Genetic Counseling Programs in North America 182

Notes 185

Index 229

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