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