A Guide to Genetic Counseling

The first book devoted exclusively to the principles and
practice of genetic counseling--now in a new edition

First published in 1998, A Guide to Genetic Counseling
quickly became a bestselling and widely recognized text, used
nationally and internationally in genetic counseling training
programs. Now in its eagerly anticipated Second Edition, it
provides a thoroughly revised and comprehensive overview of genetic
counseling, focusing on the components, theoretical framework, and
unique approach to patient care that are the basis of this
profession. The book defines the core competencies and covers the
genetic counseling process from case initiation to
completion--in addition to addressing global professional
issues--with an emphasis on describing fundamental principles
and practices.

Chapters are written by leaders in the field of genetic
counseling and are organized to facilitate academic instruction and
skill attainment. They provide the most up-to-date coverage of:

• The history and practice of genetic counseling

• Family history

• Interviewing

• Case preparation and management

• Psychosocial counseling

• Patient education

• Risk communication and decision-making

• Medical genetics evaluation

• Understanding genetic testing

• Medical documentation

• Multicultural counseling

• Ethical and legal issues

• Student supervision

• Genetic counseling research

• Professional development

• Genetics education and outreach

• Evolving roles and expanding opportunities

• Case examples

A Guide to Genetic Counseling, Second Edition belongs on
the syllabi of all medical and human genetics and genetic
counseling training programs. It is an indispensable reference for
both students and healthcare professionals working with patients
who have or are at risk for genetic conditions.

Auteur

Wendy R. Uhlmann, MS, CGC is the genetic counselor/clinic
coordinator of the Medical Genetics Clinic at the University of
Michigan. She is a Clinical Instructor in the Department of Human
Genetics and an executive faculty member of the genetic counseling
training program.

Jane L. Schuette, MS, CGC has been a genetic counselor
for 26 years ansd is currently genetic counselor and clinic
coordinator in the Division of Pediatric Genetics at the University
of Michigan Health System.

Beverly M. Yashar, MS, PhD, CGC is the program director
for the genetic counseling graduate training program in the
Department of Human Genetics at the University of Michigan.

Résumé
The first book devoted exclusively to the principles and practice of genetic counselingnow in a new edition First published in 1998, A Guide to Genetic Counseling quickly became a bestselling and widely recognized text, used nationally and internationally in genetic counseling training programs. Now in its eagerly anticipated Second Edition, it provides a thoroughly revised and comprehensive overview of genetic counseling, focusing on the components, theoretical framework, and unique approach to patient care that are the basis of this profession. The book defines the core competencies and covers the genetic counseling process from case initiation to completionin addition to addressing global professional issueswith an emphasis on describing fundamental principles and practices.

Chapters are written by leaders in the field of genetic counseling and are organized to facilitate academic instruction and skill attainment. They provide the most up-to-date coverage of:

• The history and practice of genetic counseling

• Family history

• Interviewing

• Case preparation and management

• Psychosocial counseling

• Patient education

• Risk communication and decision-making

• Medical genetics evaluation

• Understanding genetic testing

• Medical documentation

• Multicultural counseling

• Ethical and legal issues

• Student supervision

• Genetic counseling research

• Professional development

• Genetics education and outreach

• Evolving roles and expanding opportunities

• Case examples

A Guide to Genetic Counseling, Second Edition belongs on the syllabi of all medical and human genetics and genetic counseling training programs. It is an indispensable reference for both students and healthcare professionals working with patients who have or are at risk for genetic conditions.

Contenu

Foreword xv

Preface xvii

Contributors xix

1 The Practice of Genetic Counseling 1
Ann P. Walker

The Practice of Genetic Counseling 1

Definition and Goals of Genetic Counseling 5

Components of the Genetic Counseling Interaction 11

Counseling Contexts and Situations 14

Providers of Genetic Counseling 16

Professional and Educational Landmarks in Genetic Counseling 19

Professional Growth and Skill Acquisition 25

Appendix: Practice-Based Competencies 26

Genetic Counselors' Scope of Practice 30

References 32

2 The Ultimate Genetic Tool: The Family History 37
Jane L. Schuette and Robin L. Bennett

The Evolution of the Pedigree 38

Family History Basics 40

Gathering the Information and Constructing a Pedigree 43

Interpreting the Family History and Pedigree Analysis 57

Psychosocial Aspects of Obtaining a Family History 63

Summary 64

References 65

3 Interviewing: Beginning to See Each Other 71
Kathryn Spitzer Kim

Getting Started 71

Breaking the Ice 72

Setting the Stage: Core Qualities 73

Creating a Working Agreement 76

Verbal and Nonverbal Communication 80

Specific Interviewing Techniques 83

Obtaining Pedigrees 88

Assessment 89

Summary 90

Acknowledgments 90

References 90

4 Thinking It All Through: Case Preparation and Management 93
Wendy R. Uhlmann

Introduction 93

The Initial Intake 95

Billing Issues for Genetics Clinic Visits 96

Preparing a Case 97

Finding Information on Genetic Conditions 102

Practice Guidelines 103

Finding SupportAdvocacy Groups and Patient Resources 104

Performing a Risk Assessment 106

Locating and Developing Counseling Aids 112

Genetic Testing 113

Managing the Clinic Visit 125

Referrals to Other Specialists 128

Referrals of Family Members to Genetics Clinics 128

Case Documentation 129

Is a Genetics Case Ever Complete? 129

Conclusions 129

References 130

5 Psychosocial Counseling 133
Luba Djurdjinovic

Introduction 133

Psychosocial Assessment and the Structure of a Session 135

The Patient's Story 136

Achieving Dynamic Psychological Engagement: The Working Alliance 137

Disruptions in the Working Alliance 144

Discussing Difficult Issues and Giving Bad News 148

Reactions and Psychologically Challenging Experiences 151

Counselees' Coping Styles 154

Theories that Surround Our Work 155

Men in Our Practice 165

Supervision: Refining the Psychological Lens 166

Conclusion 167

References 168

6 Patient Education 177
Ann C.M. Smith and Toni I. Pollin

Sharing Expertise 178

Adult Learners 179

Models of Adult Learning 180

Genetic Counseling in the Information Age 181

The Genetic Counseling Session----A Vehicle for Patient Education 182

Additional Aspects of Patient Learning 188

Application of Instructional Aids for Patient Education 193

Tenets of Health Education and Promotion: Application to Genetic Counseling 196

Future Directions 200

Summary 201

References 201

7 Risk Communication and Decision-Making 207
Bonnie Jeanne Baty

Factors Impacting Risk Communication 208

Models of Risk Communication 213

Practical Aspects of Communicating Risk 213

The Family and Risk Communication 219 Factors Impacting Decision-Making 225</p...