Genetic Counseling Practice Advanced Concepts and Skills

The second edition of Genetic Counseling Practice: Advanced Concepts and Skills, provides in-depth content regarding the advanced competencies for meeting patient needs across the changing landscape of genetic counseling practice. The content aligns with the Reciprocal Engagement Model (REM) of practice which integrates the biomedical knowledge and psychosocial aspects of genetic counseling.

This edition has been revised and expanded to reflect advances made in the present-day field. Edited by a team two genetic counselors and a psychologist, the chapters offer a holistic picture of genetic counseling. Chapter authors are all recognized experts in the profession. The chapters are grounded in evidence-based practice and research. Each chapter includes learning activities to help readers apply concepts and skills. Featured topic areas include:

• Meeting the needs of culturally diverse patients
• Addressing challenging patient dynamics
• Working with children, adolescents and families
• Using emerging service delivery models for genetic counseling
• Engaging in self-reflective, deliberate practice
• Promoting genetic counselor professional development

Genetic Counseling Practice is an indispensable guide to the complex and evolving field of genetic counseling, and this updated second edition will help practitioners and trainees alike navigate its most pressing and practical challenges with skill and care.

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 xi

About the Authors xiii

Acknowledgments xix

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

­References 48

4 Risk Assessment and Communication: A Complex Process 53

Shannan Delany Dixon, MaryAnn W. Campion, and Claire N. Singletary

­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

Acknowledgements 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 353

­Summary Points 356

Acknowledgments 356

­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 000

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