The Human Genome Project and the Future of Health Care
Murray TH, Rothstein MA, Murray RF Jr; eds. 284 pages. Bloomington, IN: Indiana Univ Pr; 1996. $29.95. ISBN 0253332133. Order phone 800-842-6796.
Field of medicine: Ethics and genetics.
Format: Hardcover book.
Audience: Ethicists and persons with a stake in the societal implications of the Human Genome Project will find many issues thoughtfully and knowledgeably presented. Practitioners will be less satisfied because of the pronounced academic tilt of the chapters.
Purpose: To outline, probe, and analyze the potential for significant shifts in the delivery of health care and medical practice as scientific information on genetics emerges and is incorporated into health care settings.
Content: The introduction and the following 12 chapters, written by recognized authorities, offer perspectives on how newly developed genetic information and its application to medicine might alter access to and delivery of medical and other health care services. Topics include insurance, employment, entitlement programs, distributive justice, the physician-patient relationship, reproductive options and choices, clinician education, and the feasibility of specific interventions and services (gene therapy, diagnostics, testing, screening, counseling). The common theme is how to integrate or relate the new knowledge and technologies expected to result from mapping the human genome within the traditional framework.
Highlights: The text carefully blocks out the sectors of health care that will be most likely to feel the aftershocks of the chain reaction that the Human Genome Project will trigger. It is marked by a forward-looking, analytically and empirically grounded thematic coherence. The editors' carefully crafted template and contributions successfully focus and organize the material. Several chapters reflect on the convergence of cost-containment measures and possible health care reform with the applications of genome mapping to medicine and health care delivery.
Limitations: Legislative changes, rapid developments in genetics, commercial biotechnology development, and policy initiatives at the federal level have rendered some sections obsolete. Some omissions (the transfer from research and discovery to clinical validation and application; the quality of laboratory, informational, and support services; multiplex testing) limit the overall usefulness of this book to the practicing health professional and to genetic policy "wonks." The chapter titled "Educating Clinicians about Genetics" is a disappointment.
Context: The Human Genome Project, the effort to map the more than 3 billion base pairs of DNA that constitute the human genome, has made astounding progress. How to absorb the information and its technological applications within many of our social and legal structures is not yet clear. Major initiatives to make health professionals aware of the clinically relevant information produced and some of the ethical quandaries it raises are finally taking shape. This book has captured the reflections of several pioneering ethical, scientific, clinical, and legal experts who have grappled with fundamental questions about how to ensure that the scientific discoveries coming out of mapping the human genome are used to benefit all in our society and to further the traditional aims of medicine.
Reviewer: Charles R. MacKay, PhD, National Institutes of Health, Bethesda, Maryland.
Commentary: This is a very ambitious volume, and it might have been better if it had tried to address fewer and less sweeping issues. More information about specific genetic tests and services, actual and emergent, would make this book more accessible to those who may be unfamiliar with advances in DNA research and technology. My experience has been that clinicians desire more concrete information that addresses how their practice is affected by policy and scientific developments.