Source Book in Bioethics: A Documentary History

Overview

Government agencies and commissions, courts, and legislatures have during the past several decades produced reports, rendered decisions, and passed laws that have both defined the fundamental issues in the field of bioethics and established ways of managing them in our society. Providing a history of these key bioethical decisions, this is the first and only comprehensive collection of the critical public documents in biomedical ethics, including many hard-to-find or out-of-print materials. This historical volume...
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Overview

Government agencies and commissions, courts, and legislatures have during the past several decades produced reports, rendered decisions, and passed laws that have both defined the fundamental issues in the field of bioethics and established ways of managing them in our society. Providing a history of these key bioethical decisions, this is the first and only comprehensive collection of the critical public documents in biomedical ethics, including many hard-to-find or out-of-print materials. This historical volume will be a standard text for courses in bioethics, health policy, and death and dying; and a primary reference for anyone interested in this increasingly relevant field.

The book contains no figures.

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Editorial Reviews

Doody's Review Service
Reviewer: Virginia A. Sharpe, PhD (The Hastings Center)
Description: With this volume, the editors have made a valuable contribution to remedying the problem of scarce resources — in this case, resources that document the evolution of the field of biomedical ethics in the Anglo-American West. The editors are well placed to perform such a service as they have played an important role in shaping the field (as well as U.S. public policy) through their scholarship and their participation on important national commissions, federal advisory bodies, and task forces. There is no other single source available for these documents.
Purpose: The purpose is to collect, in one interpretive volume, difficult-to-find, landmark documents in the history of medical ethics.
Audience: The audience includes students and scholars of medical ethics and others who are interested in the contemporary history of the field in the Anglo-American West.
Features: The book is divided into five subject headings. The first four reflect the defining issues of the field: the ethics of research with human subjects; ethics of death and dying; issues in human genetics; and issues arising from human reproductive technologies and arrangements. A fifth section, "Ethical Issues in the Changing Health Care System," presents key documents which, although outside the specific topic areas in the first four sections, nonetheless reflect the institutionalization of practices and values that have fundamentally shaped this field in United States: the values of moral community and distributive justice as reflected in documents on organ procurement and distribution; the value of patient rights and reasonable disclosure in informed consent law; and the emerging consensus on the limits of confidentiality. Each section and individual entry begins with an introduction that usefully sets the historical context. The selections are drawn from landmark legal cases or statutes; national, international, and religious bodies; and specialty societies. What do the documents in this volume tell us about the history of biomedical ethics? They tell us that the field is largely Anglo-American in origin; that the 1970s and 1980s have been very busy years; that manipulating life (and death), manipulating the building blocks of life, and manipulating other human beings have emerged as the central concerns of the field; that this history has been played out on the public stage and has shaped and been shaped by public policy; and that the field has not been particularly concerned with public health questions, with the issue of universal access to healthcare, or with the question of the ethics of healthcare financing.
Assessment: The trick for such a volume is, of course, to decide to what extent the story told by the selections is an accurate representation of history or a reflection of the editors' particular experiences, scholarly interests, or oversights. In this case, given the editors' roles in development of the field, readers can be confident that the selected documents and themes do accurately reflect its history. In addition, it is safe to say that deficiencies reflected in the absence of documents on public health and universal access to healthcare are those of the field rather than of the editors. The largely American origins of the field, and the American emphasis on autonomy concerns, has meant that public attention to these issues has been largely absent, except in the case of the Oregon Health Plan (absent from the collection). No doubt because the United States is far from a consensus on the ethics of healthcare financing arrangements, documents such as the AMA statement on ethical issues in managed care have been omitted. As for other omissions, given the ongoing debates about abortion in this country, it does seem to be an oversight that the Roe v. Wade and Planned Parenthood v. Casey decisions are not included. A section on pregnancy and the state could also have included the South Carolina statute extending child protection laws to fetuses as well as state legislation on pregnancy restrictions in living will and durable power of attorney statutes. Finally, although I suspect that the Oregon Death with Dignity Act had not overcome legal challenges when the book went to print, it would nonetheless have been useful to have the United States' first voter-approved assisted suicide measure in the section on death and dying. The editors of this volume have provided a valuable resource by bringing together these signal historical documents. As evidence of the practical usefulness of the book, I plan to use at least two of the selections in a talk and am very happy at the convenience of finding them here.
Library Journal
Compiled by three renowned ethics scholars, this book is a collection of documents in five areas: research involving human subjects, death and dying, human genetics, human reproductive technology, and changes in the healthcare system. Although the editors have written brief overviews for each of the five main topics, background information is limited so that readers will need to refer to longer encyclopedia articles or texts for the historical and philosophical circumstances surrounding these issues. The value of this compilation lies in its single-volume access to the original text contained in many significant bioethical documents. Rulings on Baby M and on Karen Quinlan, the Baby Doe Regulations, and the Uniform Anatomical Gift Act are among the 46 documents that are quoted in full or excerpted. The result is a wonderful complement to such reference sources as the Encyclopedia of Bioethics (LJ 7/95)--there is minimal overlap with this work's appendix--and the Encyclopedia of Applied Ethics (LJ 1/98). Recommended for any library with a concentration in ethics.--Tina Neville, Univ. of South Florida at St. Petersburg Lib.
Booknews
Brings together core bioethics legislative documents, court briefs, and reports by professional organizations, public bodies, and governments around the world. Documents are organized in sections on ethics of research with human subjects, ethics of death and dying, issues in human genetics, issues arising from human reproductive technologies and arrangements, and ethical issues in a changing health care system. Jonsen is a professor of ethics in medicine and chairman of the Department of Medical History and Ethics at the University of Washington School of Medicine. Annotation c. Book News, Inc., Portland, OR (booknews.com)
From the Publisher

"In the past few decades, governments at all levels have developed a host of policies and laws that have framed the dialogue, concepts, and practice of making correct decisions on bioethical questions. Many of these documents vital to the field of bioethics are difficult to find, but this book provides easy access to the classics in the field.… A very valuable resource." -- Choice

"This is a 'must have' for the reference shelf." -- E-Streams

"An invaluable source book for, among others, ethicists, students, health law attorneys, researchers, health care professionals, and ethics committee members." --, Bioethics Forum


3 Stars from Doody
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Product Details

  • ISBN-13: 9780878406838
  • Publisher: Georgetown University Press
  • Publication date: 1/1/1998
  • Edition number: 1
  • Pages: 510
  • Product dimensions: 8.85 (w) x 11.30 (h) x 1.40 (d)

Meet the Author

Albert R. Jonsen is a professor of ethics in medicine and chairman of the Department of Medical History and Ethics at the University of Washington School of Medicine.

Robert M. Veatch is professor of medical ethics and former director of the Kennedy Institute of Ethics at Georgetown University.

LeRoy Walters is Joseph P. Kennedy Professor of Christian Ethics at the Kennedy Institute of Ethics.

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Table of Contents

Preface
Introduction 1
Pt. I The Ethics of Research with Human Subjects 3
A Short History 5
The Nuremberg Code 11
Declaration of Helsinki: Recommendations Guiding Medical Doctors in Biomedical Research Involving Human Subjects 13
On the Protection of Human Subjects: U.S. Department of Health, Education and Welfare's Institutional Guide 16
The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research: National Commission 22
Research on the Fetus: National Commission 29
Research Involving Children: National Commission 40
Institutional Review Boards: National Commission 54
Federal Regulations Regarding the Protection of Human Subjects of Research 62
Final Report of the Tuskegee Syphilis Study Ad Hoc Advisory Panel 76
Research on In Vitro Fertilization: Ethics Advisory Board DHEW 88
Human Fetal Tissue Transplantation Research Panel: National Institutes of Health 103
Pt. II The Ethics of Death and Dying 111
The Ethics of Death and Dying: Changing Attitudes toward Death and Medicine 113
Defining Death: Medical, Legal, and Ethical Issues in the Definition of Death: President's Commission 118
In the Matter of Karen Quinlan: The Supreme Court, State of New Jersey 143
The California Natural Death Act: State of California 149
Superintendent of Belchertown State School v. Saikewicz 153
Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment Decisions: President's Commission 159
In the Matter of Claire Conroy: The Supreme Court, State of New Jersey 220
Cruzan v. Director, Missouri Department of Health: U.S. Supreme Court 229
Child Abuse and Neglect Prevention and Treatment: Final Rule 238
In the Matter of Baby K 247
Pt. III Ethical Issues in Human Genetics 253
Issues in Genetics 255
Genetic Screening: Programs, Principles, and Research 260
Screening and Counseling for Genetic Conditions: President's Commission 263
Assessing Genetic Risks: Implications for Health and Social Policy: Institute of Medicine 288
Recommendation 934: On Genetic Engineering: Council of Europe 296
Splicing Life: The Social and Ethical Issues of Genetic Engineering with Human Beings: President's Commission 299
NIH "Points to Consider" for Gene Therapy Researchers 314
Gene Therapy for Human Patients: Information for the General Public 317
Gene Therapy in Man: Recommendations of European Medical Research Councils 319
The Declaration of Inuyama: CIOMS 322
Mapping and Sequencing the Human Genome: National Academy of Sciences 324
Mapping Our Genes: The Genome Projects - How Big, How Fast?: Office of Technology Assessment 327
Pt. IV Ethical Issues Arising from Human Reproductive Technologies and Arrangements 335
Readings on Human Reproduction: Introduction 337
HEW Support of Research Involving In Vitro Fertilization and Embryo Transfer: Ethics Advisory Board DHEW 341
Committee to Consider the Social, Ethical and Legal Issues Arising from In Vitro Fertilization - First Interim Report of the Waller Committee, Victoria, Australia 343
Report of the Committee of Inquiry into Human Fertilisation and Embryology: The Warnock Committee, United Kingdom 347
Ethical Considerations of the New Reproductive Technologies: American Fertility Society 358
Instruction on Respect for Human Life: The Congregation for the Doctrine of the Faith 369
In the Matter of Baby M, New Jersey Supreme Court 376
Infertility: Medical and Social Choices - U.S. Congress, Office of Technology Assessment 386
Ethics of New Reproductive Technologies: The Glover Report to the European Commission 395
Ethical Issues in Surrogate Motherhood: American College of Obstetricians and Gynecologists 398
Proceed with Care: Final Report of the Royal Commission on New Reproductive Technologies 403
Pt. V Ethical Issues in the Changing Health Care System 407
The Changing Health Care Scene 409
The Uniform Anatomical Gift Act 412
Organ Transplantation: Issues and Recommendations 418
Canterbury v. Spence, District of Columbia 448
Making Health Care Decisions: The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship: President's Commission 463
Tarasoff v. Regents of University of California, Supreme Court of California 494
Index 505
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