Risk, Age and Pregnancy: A Case Study of Prenatal Genetic Screening and Testing

253 Pages·2001·1.086 MB·English

by  Bob Heyman, Mette Henriksen (auth.), Jo Campling (eds.)

For Ruth, Michael, Anna, Daniel, Jake, Bent and Hanne
Risk, Age and Pregnancy
Also by Bob Heyman
RESEARCHING USER PERSPECTIVES ON COMMUNITY HEALTH CARE(editor)
RISK, HEALTH AND HEALTH CARE: A Qualitative Approach (editor)
Risk, Age and Pregnancy
A Case Study of Prenatal Genetic
Screening and Testing
Bob Heyman
Professor of Health Research and
Associate Dean for Research
St Bartholomew’s School of Nursing and Midwifery
City University
London
and
Mette Henriksen
Registered midwife, and
Research student
University of Northumbria
Consultant Editor: Jo Campling
© Bob Heyman and Mette Henriksen 2001
Softcover reprint of the hardcover 1st edition 2001 978-0-333-73940-2
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Copyright,Designs and Patents Act 1988.
First published 2001 by
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Companies and representatives throughout the world
PALGRAVEis the new global academic imprint of
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ISBN 978-1-349-40937-2 ISBN 978-0-333-98543-4 (eBook)
DOI 10.1057/9780333985434
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Library of Congress Cataloging-in-Publication Data
Heyman,Bob.
Risk,age,and pregnancy :a case study of prenatal genetic
screening and testing / Bob Heyman,Mette Henriksen.
p.cm.
Includes bibliographical references and index.
1.Genetic screening.2.Prenatal diagnosis.3.Pregnancy–
–Complications.4.Pregnancy in middle age.I.Henriksen,
Mette.II.Title.
RG556 .H49 2000
618.2'075—dc21
00–066560
10 9 8 7 6 5 4 3 2 1
10 09 08 07 06 05 04 03 02 01

Contents
List of Figures viii
List of Tables ix
Acknowledgements x
Introduction 1
1 The Constitution of Down’s Syndrome as a Risk Entity 37
2 Age and Pregnancy 59
3 The Offer of Genetic Screening/Testing 96
4 Women’s Decisions about Genetic Tests I: Values and
Probabilities 115
5 Women’s Decisions about Genetic Tests II: Time
Management and Outcomes 145
6 The Hospital Consultation I: The Pre-test Risk of
Genetic Abnormalities 166
7 The Hospital Consultation II: Risk and Genetic
Screening/Testing 193
Conclusions 216
References 221
Name Index 233
Subject Index 238
List of Figures
0.1 Change in Number of Screening and Neoplasm
Outputs from the Medline Database 1981–98 3
0.2 A Graphical Representation of Down’s Syndrome
Risk after Serum Screening 18
2.1 Can a Man or Woman be too Old or too Young to
Have a Baby? 64
2.2 Why is a Woman too Old or Young to Have a Baby? 94
3.1 A Model of Prenatal Genetic Decision-Making Based
on Survey Data (N = 1552) 97
3.2 Genetic Testing Offers by Age Group (N = 1546) 103
3.3 Age Group by Offers of Genetic Testing (N = 160) 104
viii
List of Tables
0.1 Terminological Options in the Language of
Screening/Testing for Down’s Syndrome 6
0.2 The Risk of Detection and Non-Detection Errors
from Serum Screening for Down’s Syndrome 17
0.3 Two Views of Risk Elements – Adapted from Heyman,
Henriksen and Maughan (1998) 28
0.4 The Research Sample 33
2.1 The Appropriate Age Range for Parenting 65
2.2 Correlations between the Ages at Which a Man and a
Woman are Judged too Old or Young to Have a Baby 65
2.3 Predictors of Endorsement of Parental Age Norms
(N = 1236) 66
2.4 Dimensions of Parental Age 69
3.1 Predictors of Offers of Genetic Screening or Testing
and Co-variables 107
3.2 Predictors of Regretting not Having Been Offered
Genetic Screening or Testing (N = 1059) 110
3.3 Predictors of Being Offered Serum Screening only
among Survey Respondents Offered Tests (N = 158) 113
4.1 Predictors of Maternal Take-up of Genetic Screening
or Testing 117
ix