Genetic Counseling Practice

Bonnie S. LeRoy, MS, CGC, Professor, Department of Genetics, Cell Biology and Development, University of Minnesota, Minneapolis, MN, USA. Patricia McCarthy Veach, PhD, LP, Professor Emerita, Department of Educational Psychology, University of Minnesota, Minneapolis, MN, USA. Nancy P. Callanan, MS, CGC, Director Emeritus, MS Genetic Counseling Program, University of North Carolina at Greensboro, NC, USA.

Preface x

About the Authors xi

Acknowledgments xvii

1 Introduction 1
Bonnie S. LeRoy, Patricia McCarthy Veach, and Nancy P. Callanan

Development of the 2nd Edition 2

References 7

2 Complicated Shadows: The Limitations of Autonomy in Genetic Counseling Practice 9
Robert G. Resta

Objectives 9

Definition and Focus 10

Seven Limitations of Autonomy 11

Summary 18

Learning Activities 19

References 21

3 Actively Engaging with Patients in Decision-Making 25
Andrea Shugar and Cheryl Shuman

Objectives 25

A Brief History of the Medical Encounter: From Paternalism to Shared Decision-Making 25

Psychological Aspects of Decision-Making 26

Informed Decision-Making 30

Summary 41

Learning Activities 41

Acknowledgment 48

References 48

4 Risk Assessment and Communication: A Complex Process 53
Shannan Delany Dixon, MaryAnn W. Campion, and Claire N. Singletary

Objectives 53

Introduction 53

Risk Assessment in Genetic Counseling 54

Risk Communication 61

Influences on Risk Perception 65

Summary 70

Learning Activities 70

References 73

5 A Genetic Counselor’s Guide to Understanding Grief 79
Nadia Ali and Cecelia Bellcross

Objectives 79

Introduction 80

The Grief Process 82

Types of Grief 89

Conclusion 101

Learning Activities 102

References 105

6 Patient Anger: Insights and Strategies 109
Lynn Schema

Objectives 109

Introduction 109

Challenges Posed by Patient Anger 116

Practice Applications 118

Conclusion 123

Summary Points 123

Learning Activities 124

References 127

7 Resistance and Adherence: Understanding the Patient’s Perspective 131
Krista Redlinger-Grosse

Objectives 131

Definition and Concepts 132

Resistance 133

Adherence and Non-adherence 140

Summary 144

Learning Activities 145

References 148

8 Countertransference: Making the Unconscious Conscious 153
Krista Redlinger-Grosse

Objectives 153

Definitions and Concepts 154

The Countertransference Process 155

Manifestations and Effects of Countertransference 161

Management of Countertransference 166

Summary 169

Learning Activities 169

References 171

9 Supporting Family Communication About Genetic Conditions 177
Marion Mcallister, Rhona Macleod, and Alison Metcalfe

Objectives 177

Introduction 177

Literature Review 178

Application of Select Family Systems Theory Interventions Adapted to Genetic Counseling 180

Summary 186

Learning Activities 187

Acknowledgments 188

References 188

10 Developmentally Based Approaches for Counseling Children and Adolescents 191
Stephanie Austin and Kelly Schoch

Objectives 191

Introduction 191

Child and Adolescent Development 192

Theoretical Framework 195

Chronic Illness and Children 197

Strategies for Genetic Counseling with Children and Adolescents 199

Conclusion 212

Summary Points 212

Learning Activities 212

References 214

11 Cultural Competency and Genetic Counseling: Key Concepts 219
Nancy Steinberg Warren

Objectives 219

Introduction 219

Definitions and Key Concepts 220

Health Disparities 226

Conceptualizing Cultural Competence 230

Developing Cultural Competency 231

Summary 236

Learning Activities 236

Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 239

References 240

12 Cultural Competency: Application to Genetic Counseling 247
Nancy Steinberg Warren

Objectives 247

Introduction 247

Cultural Competency and the Genetic Counseling Process 248

Explanatory Models of Health and Well-being 253

Health Literacy 259

Working with Interpreters and Translators 260

Summary 263

Learning Activities 264

Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 265

References 266

13 Education in Genetic Counseling: The Impacts of Genetic Literacy and Adult Learning 271
Andrea L. Durst and Rachel Mills

Objectives 271

Introduction 271

General Literacy in the United States 273

Health Literacy 274

Genetic Literacy 276

Genetic Literacy Considerations for Genetic Counselors 280

Adult Education Theory in Practice 294

Summary Points 301

Learning Activities 302

References 304

14 Adapting Genetic Counseling Practice to Different Models of Service Delivery 317
Angela Trepanier and Dawn C. Allain

Objectives 317

Introduction 317

Defining Service Delivery Models 318

Attributes of Alternative Service Delivery Models 319

Putting it all Together – Practice Implications 329

Conclusions 333

Learning Activities 333

References 335

15 “Oh The Places You’ll Go!” The Genetic Counselor Professional Development Journey 341
Catherine A. Reiser

Objectives 341

Introduction 341

Literature Review 343

Reflective Practice 347

Optimizing Self-Reflection 352

Leadership 354

Summary Points 356

Acknowledgments 356

Learning Activities 357

References 360

16 Development of the Genetic Counseling Profession: A Professionalization Process 365
Bonnie Jeanne Baty

Objectives 365

What Makes a Field of Practice a Profession? 365

How Does Genetic Counseling Measure Up to the Characteristics of a Profession? 366

Milestones in the Development of the Genetic Counseling Profession 366

Genetic Counseling and the General Model of Professionalization 369

Looking to the Future: Milestones that Need Further Development to Advance the Professionalization of Genetic Counseling 370

How is Professionalization of Genetic Counseling Relevant to Genetic Counseling Practitioners? 375

Summary 376

Learning Activities 377

References 378

Index 383