Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases

This book presents twenty-nine case studies that identify the most important ethical issues likely to emerge from new technologies of genetic testing and develops a series of guidelines based on the case studies. The authors believe that guideline formation is dependent on case analysis and that any statement of general guidelines must follow from concrete, practical discussion of specific situations. For these reasons, the guidelines presented are rooted in the case discussions and follow from the resolution of the cases. By providing the clinical origins and rationale behind each of its recommendations, the book aims to provide guidance for thinking through the ethical issues as well as a starting point for development of additional guidelines.

"This timely, well-written book brings together the collective experience of experts from the fields of medicine, psychiatry, religious studies, bioethics, and molecular genetics in an effort to develop coherent guidelines for the counseling of potential sufferers from genetic diseases." --Journal of Religion and Health

This book presents 29 case studies that identify the most important ethical issues that are likely to emerge from new technologies of genetic testing and develops a series of guidelines based on those case studies. By providing the clinical origins and rationale behind each of its recommendations, the book will help readers think through the ethical issues and will assist them in the development of additional guidelines.

This timely, well-written book brings together the collective experienceof experts from the fields of medicine, psychiatry, religious studies, bioethics, and molecular genetics in an effort to develop coherent guidelines for thecounseling of potential sufferers from genetic diseases. -- Journal of Religion andHealth

This book presents 29 case studies that identify the mostimportant ethical issues that are likely to emerge from new technologies of genetictesting and develops a series of guidelines based on those case studies. Byproviding the clinical origins and rationale behind each of its recommendations, thebook will help readers think through the ethical issues and will assist them in thedevelopment of additional guidelines.

Roger B. Dworkin is the Robert H. McKinney Professor of Law at Indiana University School of Law-Bloomington and Nelson Poynter Scholar and Director of Medical Studies at Indiana University's Poynter Center for the Study of Ethics and American Institutions. Dworkin, who has previously served as Professor of Biomedical History at the University of Washington School of Medicine, is an expert on the relationship between law and the biomedical sciences. He is the author of Limits: The Role of the Law in Bioethical Decision Making, and numerous articles in the field as well as the co-author of a leading casebook on law and medicine.

Gregory P. Gramelspacher, M.D. is the founder and Director of the Program in Medical Ethics, Indiana University School of Medicine. He is a general internist with research interests in the areas of death and dying, advance directives, and ethical implications of the human genome project.

Judith A. Granbois joined the staff of The Poynter Center for the Study of Ethics and American Institutions in 1980. She has taught writing and ethics courses at Indiana University and is the co-author of articles on various topics in biomedical ethics.

Dr. Kimberly A. Quaid is Co-Director, Clinical Associate Professor of Medical Genetics and Psychiatry and Clinical Associate Professor of Medical and Molecular Genetics and Psychiatry at the Indiana University School of Medicine. Dr. Quaid coordinated one of the first programs in the country to offer predictive testing for Huntington disease at Johns Hopkins Hospital. She works with families at risk for Huntington disease, Gerstmann-Straussler-Scheinker disease and Alzheimer disease both in providing education and testing to patients and their families as well as doing research on the clinical outcomes of testing and is internationally recognized for her work in the development of ethically sound protocols for genetic testing. She has published numerous journal articles and is author of "Implications of susceptibility testing with Apolipoprotein E," in Stephen G. Post (ed.) Ethics, Genetics and Alzheimer Disease.

David H. Smith is Professor of Religious Studies at Indiana University and Director of The Poynter Center for the Study of Ethics and American Institutions. He is a founding member of the Hospice of Bloomington and the Association for Practical and Professional Ethics. His publications include Entrusted: The Moral Responsibilities of Trusteeship and Health and Medicine in the Anglican Tradition: Conscience, Community, and Compromise.

Dr. Gail Vance is an Assistant Professor in the Department of Medical and Molecular Genetics. Dr. Vance joined the Indiana University School of Medicine faculty in 1992, after completing fellowships in clinical genetics and cytogenetics. Dr. Vance is board certified in Pediatrics (American Board of Pediatrics, l990), Clinical Pathology (American Board of Pathology, l989), and Medical Genetics and Clinical Cytogenetics (American Board of Genetics, 1993). Dr. Vance developed the Indiana Familial Cancer Program in the Department of Medical and Molecular Genetics in l993, to provide genetic counseling and genetic testing to individuals with a high risk for the development of cancer. She is also Assistant Director of the Cytogenetic laboratory.

Introduction

Cases

Case 1 -- Paul and Michael

Case 2 -- Father and Son

Case 3 -- Sarah

Case 4 -- Ann and Jack

Case 5 -- Carol

Case 6 -- Kirsten and David

Case 7 -- Robert

Case 8 -- Mr. H

Case 9 -- Natalie

Case 10 -- Mary Ann

Case 11 -- Maurice

Case 12 -- Mr. L

Case 13 -- Mr. Crawford

Case 14 -- Mr. and Mrs. Anderson

Case 15 -- Jimmy

Case 16 -- Harriet

Case 17 -- Charley

Case 18 -- Mr. and Mrs. B

Case 19 -- Julie

Case 20 -- Barbara

Case 21 -- Doug

Case 22 -- Uncle Lee

Case 23 -- Emily

Case 24 -- Mrs. K

Case 25 -- Ruth

Case 26 -- Jackie

Case 27 -- Aunt Mary

Case 28 -- Scott

Case 29 -- Mrs. Sawyer

Guidelines and Commentary

Guideline I

Guideline II

Guideline III

Guideline IV

Guideline V

Guideline VI

Guideline VII

Guideline VIII

Guideline IX

Guideline X

Guideline XI

Glossary

References