Book review of: Gene Mapping: Using Law and Ethics as Guides, edited by George J. Annas and Sherman Elias. New York: Oxford University Press, 1992, ISBN 0-19-507303-7, xxii + 291pp. US$39.95.

Journal: Politics & Life Sciences 13 (1994), 152-3.
Author: Darryl R. J. Macer
The Human Genome Project (HGP) is the largest specific life science research project in the world, and it has been a political issue since its inception and the increased funding it has received since 1988. This project involves gene mapping and sequencing of all the genome (all the DNA) of human beings, and some other "model" organisms, coordinated at both national and international levels.

This project has been sold as a pinacle of genetics research, with the potential medical and industrial benefits that are increasingly coming from the application of genetics to medical therapy and the biotechnology industry. Although it will not be a cure to all of the world's ills, as it is often suggested, it does promise much higher returns on investment of research funding than other biomedical research projects. About half the funding is coming from the USA, with other major funders being Canada, the European Community (especially France and the UK), and Japan. Efforts to get all the major industrialised countries to fund a fair share of the project continues to be a political problem, but this is becoming less serious as more of the funding has shifted to the industrial sector.

The major political issues are those that arise from the application of such knowledge. "Knowledge is power", and genetic knowledge provides power over life itself. This power may be controlled only if society prepares for it. This book includes 17 chapters by U.S. authors focusing on the ethical, legal and social impact (ELSI) issues of the HGP. It defines many of the ELSI issues and makes a priority list for a U.S. context. The U.S. HGP funded by the government NIH and Department of Energy has set an international example by commiting about 5% of its funding to ELSI and educational issues.

A foreward by James Watson and Eric Juengst outlines the role of the ELSI program of the NIH National Center for Human Genome Research, to help anticipate the consequences of the HGP. The first of six sections includes two introductory chapters. Annas and Elias divide the social policy issues into individual/family issues, in which they include guidelines for establishing DNA banks, societal issues, which includes eugenics, and so-called species issues, which focuses on reductionism. Victor McKusick provides a comprehensive description of gene mapping and a summary of the clinical applications. The amount of science included in the total book is quite sufficient for a book focusing on ELSI issues of the HGP, which should increase its appeal, and usefulness, to scholars of ethics, law, political and social sciences. All the chapters are quite readable and include many references to recent studies (up to 1991).

The next three chapters, by Judith Swazet, Robert Proctor, and Patricia King, are on social policy implications. They consider the history of eugenics, the origins of a desire to sequence the genome, and the possibility of future gene discrimination. In the third section of the book, Evelyne Shuster looks at determinism and reductionism; Arthur Caplan examines the concept of disease with reference to gene therapy; and Elias and Annas consider somatic cell and germline gene therapy, and outline some prerequisites for ethical germline gene therapy. In coming years we can expect these issues to become more political, though the basic question of socialised health and care for the sick has long been a political difference between countries as close as the USA and Canada. As we identify people at high risk of different conditions, and we are all at higher than average risk for some complaint, this political issue of social justice will become stronger.

The next section looks at the changes in clinical practice that can be expected from genetic testing. Ruth Macklin stresses the importance of privacy of genetic information, especially in the individualistic U.S. society. The growth in DNA data banks threatens individual privacy, as competing private medical and life insurance companies already do. Here is yet another political issue, individual versus social interests. The next chapter includes two case studies on genetic predisposition and insurance company discrimination; one on colon cancer by Ray White, and the second on adult polycystic kidney disease by Thomas Caskey. Already some people are being excluded from insurance, even without absolute proof of predisposition, so with a growing number of diseases we can expect more cases unless anti-discrimination laws for insurance companies are introduced. The next chapter, by Elias, Annas and Joe Leigh Simpson looks at the case of cystic fibrosis carrier screening. They argue against the widespread use of screening in couples with no previous history of the disease, and warn against inappropriate use by an uninformed public that is already being exposed to market pressures from companies who are selling screening tests. James Sorenson looks at the effect of genetic counseling on users.

The fifth section looks at "legal and ethical frontiers". John Robertson looks at the potential impact of the HGP on procreative "liberty"; should carrier status information be shared, should there be limits on abortions for genetic indications, and the use of preimplantation genetic diagnosis. Rebecca Eisenberg looks at the question of patent rights. The chapter was written before the international political controversy over patent claims on uncharacterised cDNA sequences made by the NIH and the U.K. Medical Research Council arose. There may clearly be different national policies possible, given that the French government and some other European governments are opposed to such patents, if the U.S. policy is altered to allow some type of patent protection. The French have said that they will give the genome sequence to the United Nations for all the world to share, which contrasts with the U.S. approach. Thomas Murray calls for more public willingness to criticise and debate the ELSI issues raised. LeRoy Walters calls for a U.S. national advisory committee on genetic testing and screening. It is a useful insight into the working of some past and current ethics committees on genetics. In the past few years in the USA, abortion politics has interfered with the establishment and working of such committees, but there is recent hope for the setting up of such bioethics committees.

The conclusion sets the major social policy research priorities as: when and how to introduce more genetic tests into clinical medicine, how to preserve privacy and prevent discrimination by employers and insurance companies, and how the HGP will affect our concepts of disease, normalcy or humanness? Basically all these issues have political consequences for the next century of health care, which need to be answered now.

The book is important for the study of politics of life sciences in that it sets out some key issues, many of which are not new in themselves, but which must be faced in the genetic information explosion which is resulting from the HGP. We need deeper examination of each issue and data to test the various hypotheses proposed. A final comment is that we can hope that future ELSI-related publications from the USA are more international in outlook but of similarly high standard, and that other governments lend equal support to considering how to guide the application of science in society. Approaches to health care have been tried in many countries, and we can avoid repeating the mistakes made in some by learning from an international approach. The genome project is international by necessity of its size and the global scientific community, the ELSI project must also be truely international if it can succeed in assessing and responding to the consequences of genetics.

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