The Genetic Testing of Children (eBook, PDF)

Redaktion: Clarke, Angus

• Format: PDF

Produktbeschreibung

This book, written by a leading geneticist, examines the ethical and social issues raised by the genetic testing of children.

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Produktdetails

• Verlag: Taylor & Francis
• Seitenzahl: 352
• Erscheinungstermin: 26. Juli 2020
• Englisch
• ISBN-13: 9781000102369
• Artikelnr.: 59826884

Autorenporträt

Institute of Medical Genetics, University of Wales College of Medicine, Cardiff, UK.

Inhaltsangabe

List of contributors
Acknowledgements
Preface
Introduction
Social and ethical issues around genetics
Children and childhood
Issues for practitioners (genetic counsellors)
Genetic testing in childhood
The relevant genetic contexts
Discussions about testing children
Lessons from screening children for susceptibility to disease
The 'adoption' model of genetic information
The contents of this volume
References
PART ONE: SETTING THE SCENE
1 The genetic testing of children: some legal and ethical concerns /Sheila A.M. McLean
Introduction
Presymptomatic testing for childhood
onset disorders
Testing for late
onset disorders
Conclusion
References
2 Talking to children
and talking with them /Priscilla Alderson
Introduction
Words and meanings
Risk in talking with children
Contradictions
Timing and content
Competence
Conclusion
References
3 Reflections on genetic testing in childhood /Dietmar Mieth
Pragmatic ethical issues concerning diagnostic tests on children
Fundamental ethical issues concerning genetic tests on children
References
PART TWO: CARRIER T ESTING IN CHILDH OOD
4 On the receiving end of genetic medicine /Christine Lavery
Introduction
MPS diseases
Conclusion
5 Testing children for balanced chromosomal translocations: parental views and experiences /Chris Barnes
Introduction
Materials and methods
Results
Discussion and conclusions
References
6 Identifying carriers of balanced chromosomal translocations: interviews with family members /Anita Jolly, Evelyn Parsons and Angus Clarke
Introduction
Methodology
Coming to terms with being a carrier
how family members coped with learning about their carrier status
The tentative pregnancy
Feeling 'different'
The age of consent
Responses to genetic counselling
Summary
References
A retrospective study of genetic carrier testing in childhood
OutiJarvinen and Helena Kaiiridinen
Introduction
Problems in testing children
What would be the optimal age for testing?
The practice of carrier testing
past and present
The aims of this study
Conclusion
References
Childhood testing for carrier status: the perspective of the Genetic Interest Group
John Gillott
Introduction
Extract from the GIG response to the Clinical Genetics Society Report: 'The Genetic Testing of Children'
Clarification
Why testing for carrier status is different from testing for adult
onset conditions
Parental autonomy and the danger of harm
References
PART THREE: PREDICTIVE GENETIC TESTING
9 Telling the children /Heather Skirton
Introduction
Study
Setting the scene
Issues of disclosure
The process of renegotiation
Conclusion
References
10 Family processes in regard to genetic testing /Seymour Kessler
Abstract
Introduction
Shame and guilt
Family dynamics
The protective function of families
The psychological needs of children
References
11 Adolescent requests for predictive genetic testing /Julia Binedell
Introduction
Current guidelines
The costs and benefits of childhood genetic testing
Self
referral by adolescents
The legal precedent for assessment of competence
How should decision
making competence by defined?
What is the evidence concerning competence in adolescents?
Barriers to competent decision making in adolescence
How do adults make genetic
related decisions?
How should competence be assessed, and by whom?
A framework for assessing competence in adolescence
Conclusions
Acknowledgements
References
12 Moving away from the Huntington's disease paradigm in the predictive genetic testing of children /Cynthia B. Cohen
Abstract
Introduction
Disadvantages of testing children for adult
onset conditions
Benefits of testing children for adult
onset conditions
Other factors relevant to a decision
The roles of parents and professionals in the decision
Social import of predictive testing of children
References
13 Cancer susceptibility testing: risks, benefits and personal beliefs /Andrea Farkas Patenaude
Introduction
Which children are potential testing candidates?
Complexity of cancer risk identification
Testing for which genes? Under what conditions? With what safeguards?
Risks of genetic testing of children for cancer susceptibility
Will parents want to test children?
The impact of personal beliefs on the utilization of genetic testing
Professional guidelines and a need for public education
Summary
Acknowledgement
References
PART FOUR: RESEARCH PERSPECTIVES
14 The genetic testing of children: adult attitudes and children's understanding /Martin Richards
Introduction
Diagnostic genetic testing
Predictive testing
Carrier detection in recessively
inherited disorders
Children's understanding of inheritance
What are public attitudes to the genetic testing of children for late
onset genetic disorders
References
15 Predictive genetic testing in children: the need for psychological research /Susan Michie and Theresa M. Marteau
Abstract
Introduction
Views of users and providers
Decision making in children
Psychological impact of predictive testing
Conclusion
Acknowledgements
References
16 Exploring the approach of psychology as a discipline to the childhood testing debate: issues of theory, empiricism and power /Lucy Brindle
Introduction
Empiricism as the key to objectivity
Formulating objects of debate
Accounting for inconsistency
An alternative paradigm
Psychology as contemporary theory
Constructing the subject of genetic testing
The formulation of informed decision making and competence within a cognitive framework
Talking about childhood testing
a discursive alternative to attitudes, competence and informed consent
Discussion
References
17 Predictive and carrier testing of children: professional dilemmas for clinical geneticists /Alison Chapple, Carl May and Peter Campion
Abstract
Introduction
Study group and method
Discussion
Acknowledgements
References
18 Complementary methodologies in the evaluation of newborn screening for Duchenne muscular dystrophy /Evelyn Parsons and Don Bradley
Introduction
T he psychosocial evaluation
Complementary methodologies discussed
Complementary methodologies in practice
Summary
Conclusion
References
PART FIVE: THE WIDER CONTEXT
19 Childhood, genetics, ethics and the social context /Priscilla Alderson
Introduction
Policy from the past
Today's attitudes towards childhood and adolescence
Research about childhood
Genetics and eugenics
Abstract or evidence
based ethics?
Reducing social into genetic concepts
Conclusion
References
20 Appropriate paternalism and the best interests of the child /Zarrina Kurtz
Abstract
Paternalism
Rights
Decision making
Conclusion
References
21 Predictive genetic screening and the concept of risk /Rogeer Hoedemaekers
Introduction
'Risks' inherent in a genetic screening programme
'Uncertainty' and 'possibility', 'probability' and 'risk'
Being at risk and taking a risk
Genetic risk
Risk perception, risk selection and risk taking
The value of genetic information
Conclusion
Acknowledgements
References
22 Commercial testing /Shirley Dalby
Introduction
Differences between the public and commercial sectors
Causes for concern
Who are the customers?
Conclusions
23 International perspectives /Dorothy C. Wertz
Abstract
Introduction
Survey methods
Survey results
Cultural and clinical contexts
Discussion
References
Appendix 1. The genetic testing of children: Report of a working party of the Clinical Genetics Society
Appendix 2. EURO SCREEN survey of attitudes to the genetic testing of children among members of the European Society of Human Genetics
Index.