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 xAbout the Authors xiAcknowledgments xvii1 Introduction 1Bonnie S. LeRoy, Patricia McCarthy Veach, and Nancy P. CallananDevelopment of the 2nd Edition 2References 72 Complicated Shadows: The Limitations of Autonomy in Genetic Counseling Practice 9Robert G. RestaObjectives 9Definition and Focus 10Seven Limitations of Autonomy 11Summary 18Learning Activities 19References 213 Actively Engaging with Patients in Decision-Making 25Andrea Shugar and Cheryl ShumanObjectives 25A Brief History of the Medical Encounter: From Paternalism to Shared Decision-Making 25Psychological Aspects of Decision-Making 26Informed Decision-Making 30Summary 41Learning Activities 41Acknowledgment 48References 484 Risk Assessment and Communication: A Complex Process 53Shannan Delany Dixon, MaryAnn W. Campion, and Claire N. SingletaryObjectives 53Introduction 53Risk Assessment in Genetic Counseling 54Risk Communication 61Influences on Risk Perception 65Summary 70Learning Activities 70References 735 A Genetic Counselor’s Guide to Understanding Grief 79Nadia Ali and Cecelia BellcrossObjectives 79Introduction 80The Grief Process 82Types of Grief 89Conclusion 101Learning Activities 102References 1056 Patient Anger: Insights and Strategies 109Lynn SchemaObjectives 109Introduction 109Challenges Posed by Patient Anger 116Practice Applications 118Conclusion 123Summary Points 123Learning Activities 124References 1277 Resistance and Adherence: Understanding the Patient’s Perspective 131Krista Redlinger-GrosseObjectives 131Definition and Concepts 132Resistance 133Adherence and Non-adherence 140Summary 144Learning Activities 145References 1488 Countertransference: Making the Unconscious Conscious 153Krista Redlinger-GrosseObjectives 153Definitions and Concepts 154The Countertransference Process 155Manifestations and Effects of Countertransference 161Management of Countertransference 166Summary 169Learning Activities 169References 1719 Supporting Family Communication About Genetic Conditions 177Marion Mcallister, Rhona Macleod, and Alison MetcalfeObjectives 177Introduction 177Literature Review 178Application of Select Family Systems Theory Interventions Adapted to Genetic Counseling 180Summary 186Learning Activities 187Acknowledgments 188References 18810 Developmentally Based Approaches for Counseling Children and Adolescents 191Stephanie Austin and Kelly SchochObjectives 191Introduction 191Child and Adolescent Development 192Theoretical Framework 195Chronic Illness and Children 197Strategies for Genetic Counseling with Children and Adolescents 199Conclusion 212Summary Points 212Learning Activities 212References 21411 Cultural Competency and Genetic Counseling: Key Concepts 219Nancy Steinberg WarrenObjectives 219Introduction 219Definitions and Key Concepts 220Health Disparities 226Conceptualizing Cultural Competence 230Developing Cultural Competency 231Summary 236Learning Activities 236Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 239References 24012 Cultural Competency: Application to Genetic Counseling 247Nancy Steinberg WarrenObjectives 247Introduction 247Cultural Competency and the Genetic Counseling Process 248Explanatory Models of Health and Well-being 253Health Literacy 259Working with Interpreters and Translators 260Summary 263Learning Activities 264Resources for Cultural Knowledge, Cases, Teaching, and Learning Exercises 265References 26613 Education in Genetic Counseling: The Impacts of Genetic Literacy and Adult Learning 271Andrea L. Durst and Rachel MillsObjectives 271Introduction 271General Literacy in the United States 273Health Literacy 274Genetic Literacy 276Genetic Literacy Considerations for Genetic Counselors 280Adult Education Theory in Practice 294Summary Points 301Learning Activities 302References 30414 Adapting Genetic Counseling Practice to Different Models of Service Delivery 317Angela Trepanier and Dawn C. AllainObjectives 317Introduction 317Defining Service Delivery Models 318Attributes of Alternative Service Delivery Models 319Putting it all Together – Practice Implications 329Conclusions 333Learning Activities 333References 33515 “Oh The Places You’ll Go!” The Genetic Counselor Professional Development Journey 341Catherine A. ReiserObjectives 341Introduction 341Literature Review 343Reflective Practice 347Optimizing Self-Reflection 352Leadership 354Summary Points 356Acknowledgments 356Learning Activities 357References 36016 Development of the Genetic Counseling Profession: A Professionalization Process 365Bonnie Jeanne BatyObjectives 365What Makes a Field of Practice a Profession? 365How Does Genetic Counseling Measure Up to the Characteristics of a Profession? 366Milestones in the Development of the Genetic Counseling Profession 366Genetic Counseling and the General Model of Professionalization 369Looking to the Future: Milestones that Need Further Development to Advance the Professionalization of Genetic Counseling 370How is Professionalization of Genetic Counseling Relevant to Genetic Counseling Practitioners? 375Summary 376Learning Activities 377References 378Index 383