Genetics and Ethics in Health Care: New Questions in the Age of Genomic Health Book

Prologue Genetics and Genomic Health Care: The Mission and Aims of the National Human Genome Research Institute and Its Potential Impact on Clinical Practices Dale Halsey Lea Jean F. Jenkins vii

Introduction Genetics and Ethics in Nursing: New Questions in the Age of Genomic Health Rita Black Monsen xiii

Coda Genetics and Genomics in Historical Context A Brief History of the Early Days of Clinical Genetics Margaret Abbott xix

How Far We Have Come Rita Black Monsen xx

Part 1 Genetics, Genomics, and Ethics: Basic Considerations 1

Chapter 1 The ANA Code of Ethics Laurie Badzek 5

Chapter 2 Integrating Ethical Guidelines with Scope and Standards of Genetics and Genomics Nursing Practice Karen Greco 13

Chapter 3 Shaping Genetic Policy: The United States Initiatives Agnes Masny 27

Chapter 4 Principles of Healthcare Ethics for the Twenty-first Century Chris Hackler 53

Chapter 5 Redefining the Conventions of Informed Consent: Challenges in the Genomic Era Robbie J. Dugas Melinda Granger Oberleitner 65

Chapter 6 Genetic Inheritance, Identity, and the Proper Role of Nursing Sharon Olsen 79

Chapter 7 Danger and Genomic Technologies Rita Black Monsen 97

Part 2 Religious and Cultural Perspectives of Communities and Societies 103

Chapter 8 Hinduism and Sikhism: Genetic Counseling Aspects Elizabeth Gettig Triptish Bhatia 109

Chapter 9 "Every Generation...": A Jewish Approach to Questions of Genetic Research, Testing and Screening, and Gene Therapy Rabbi Michael L. Feshbach 129

Chapter 10 The Catholic Church Views on Genetic Testing: Indications for Genetic Counselors Rebecca B. Donohue 141

Chapter 11 Attitudes of Muslims Regarding the NewGenetics: Testing, Treatment, and Technology Noureddine Berka Timikia Vaughn Verle Headings Barbara W. Harrison Robert F. Murray Franklin R. Ampy Imam Johari Abdul-Malik 149

Chapter 12 Genetics and Ethics from a Christian Perspective Isaac M. T. Mwase Connie C. Price 165

Chapter 13 Native American Communities: Perspectives on Healthcare Genetics Linda Burhansstipanov Lynne Taylor Bemis Daniel G. Petereit 179

Chapter 14 Hispanic/Latino Perspectives on Genetics and Ethics Carmen T. Paniagua Robert E. Taylor 201

Chapter 15 African American Perspectives on Genetics and Ethics Ida J. Spruill Bernice Coleman 213

Part 3 Applications of Genetics and Genomics in Health Care 235

Chapter 16 Concerns of Patients and Families Surrounding Genetic Testing Janet K. Williams 241

Chapter 17 Parental Request for Advanced Directives: Decision-Making in Evolving Environments Robin R. Leger 251

Chapter 18 Ethical Analysis of Genetic Testing in Children John G. Twomey 265

Chapter 19 Genetics and Ethics in Nursing: Cancer Prevention for Clients with Inherited Cancer Risk Cathleen M. Goetsch 285

Chapter 20 Ethical Obligations to Patients Who Engage in Lifelong Self-surveillance for Genetic Risk of Cancer Ellen Giarelli 301

Chapter 21 Cystic Fibrosis: Screening, Testing, Ethics Diane Seibert Melissa H. Fries 315

Chapter 22 Genetic Testing and Counseling in Huntington Disease Heather Skirton 331

Part 4 Case Studies in Genetics and Ethics 345

Chapter 23 Prenatal Case Study Dale Halsey Lea 349

Chapter 24 Sickle Cell Disease Case Study Victoria Odesina 359

Chapter 25 Case Study in Hereditary Breast and Ovarian Cancer Sue Miller-Samuel 369

Chapter 26 Hereditary Nonpolyposis Colon Cancer: A Case Study of Ethical Implications Deborah J. MacDonald 385

Chapter 27 The P Family, At Risk for Alzheimer's Disease Rita Black Monsen 397

Epilogue Genetics and Ethics in Health Care and Nursing Rita Black Monsen 407

Glossary of Terms 417

Acronyms 423

Contributor Biographies 429

Index 443