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, xxii + 291pp. US$39.95.

Journal: Nichibunken Newsletter 15 (1993), 3-6.
Author: Darryl R. J. Macer
This book includes 17 chapters by U.S. authors focusing on the ethical, legal and social impact (ELSI) issues of the Human Genome Project (HGP). All the authors were involved in a January 1991 ELSI workshop held at the National Institutes of Health (NIH), which was chaired by the editors. It attempts to define the ELSI issues and to determine which issues should be of highest priority. This is done reasonably well, within a U.S. context, but perhaps suffers because it is generally introspective in an international sense. However, one could say that it sets an example for other countries to build upon, the same as the U.S. HGP has set an example by commiting 5% of its funding to ELSI and educational issues.

The book is divided into six sections, following a foreward by James Watson and Eric Juengst which outlines the role of the ELSI program of the NIH National Center for Human Genome Research to help anticipate the consequences of the HGP. They open with a memorable sentence, "It is a twentieth-century truism that science is not done in a vacuum and should not be pursued as if it could be." The first section includes two introductory chapters, one by Annas and Elias on the major social policy issues raised by the HGP, and the second on the scientific aspects by Victor McKusick. The social policy issues are divided 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. These and further issues are dealt with in depth by later chapters. The only chapter in the book on the scientific aspects, by McKusick, is a comprehensive and historical description of gene mapping, including the emergence of databases, and a summary of the clinical applications. It puts the HGP into its proper context, as a progression of gene mapping which has been underway for decades. The amount of science included in the total book is quite sufficient for a book focusing on bioethical issues of the HGP, which should increase its appeal, and usefulness, to scholars of ethics, law and social sciences.

The rest of the book considers ELSI issues, with some clinical dilemmas discussed, which will add to the interest of clinicians and genetic counselors. 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. They are quite readable, and like the other chapters, include many references to recent studies (up to 1991).

The third section of the book looks at the HGP and the human condition. Evelyne Shuster looks at determinism and reductionism, which will increase with the expanding genetic knowledge. Arthur Caplan examines the concept of disease with reference to gene therapy. This interesting chapter looks at how the concept of what is normal is changing and how this will affect the limits of therapy. This was one of the more valuable chapters in the book personally, and it brings out that a more important ethical categorisation of gene therapy than somatic cell/germline, is disease/non-disease. It starts to look at how much abnormality is involved in concepts of disease. Next Elias and Annas consider somatic cell and germline gene therapy, especially looking critically at the arguments for and against germline therapy, and outline some prerequisites for ethical germline gene therapy. They make a call for an international consensus on this issue before it proceeds, given the consequences of germline intervention.

The next section looks at the changes in clinical practice that can be expected from genetics, and includes four chapters on genetic testing/screening. Ruth Macklin stresses the importance of privacy of genetic information, especially in the ultra-individualistic U.S. society. The growth in DNA data banks threatens individual privacy, as competing private medical and life insurance companies already do. 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. It reviews the conclusions of an NIH panel on cystic fibrosis carrier screening, then sets out obligations that obstetricians and gynecologists have when they commence 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 a list of questions of what we still don't know about genetic counseling. How effective is genetic counseling at providing people with genetic and medical information to enable more informed reproductive decisions? How useful do they find the information? Does genetic counseling impact on a person's psychological status, reproductive plans and behaviour, personal relationshhips, marital satisfaction, and family stability? Answering these questions will aid clinical practice.

The fifth section looks at "legal and ethical frontiers". John Robertson looks at the potential impact of the HGP on procreative "liberty". The questions in law that need to be answered include whether carrier status information should be shared, whether there should be limits on abortions for genetic indications, and the use of preimplantation genetic diagnosis. Rebecca Eisenberg looks at the question of patent rights, on processes and sequences, an area that lawyers and policy makers must decide on. The chapter was written before the international 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. By the end of the century, when the complete human DNA sequence is available, it will be more difficult to prove novelty and non-obviousness for future gene patents.

Thomas Murray calls for more willingness to criticise and debate the ELSI issues raised, not just among academics. LeRoy Walters calls for a U.S. national advisory committee on genetic testing and screening - something which may emerge in the near future in the USA. It is a useful insight into the working of some past and current ethics committees on genetics. At the end of the book is a seven page conclusion by Annas and Elias, on social policy research priorities for the HGP. They include the questions 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.

The aim of the book is to identify questions to be examined by ELSI research, and this is done quite well. In a few chapters the authors go beyond this into looking at answers to the dilemmas, but most of this is left to further research, with some useful references for researchers. There are a variety of books available on this subject, and this is among the better of them. However, we must look for deeper exploration of each issue raised, and the provision of data to test the various hypotheses that these authors, and numerous others, propose. The range of questions means that there will be plenty of work for bioethicists and social scientists to do in gathering data, debating and educating. However, the final paragraph of the book includes a pertinent warning - let us hope that the focus on genetics brought about by the huge cash influx into bioethics research will not result in overemphasis on genetics in the study of life ethics. We could also add, that we can hope that the combined total of over US$7 million a year being poured into ELSI research on agricultural biotechnology and the HGP in the USA will not lead to saturation of the bioethics press with U.S. answers to these global issues. We can hope that future ELSI-related publications from the USA are more international, and that other governments lend equal support to considering how to guide the application of science in society.

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