Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing (review)

BOOK REVIEWS Promoting Safe and Effective Genetic Testing in the United States: Final Report of the Task Force on Genetic Testing, edited by Neil A. Holtzman and Michael S. Watson. Baltimore: Johns Hopkins UP, 1998. Pp. 186. $60.00. Although committee authorship is often hazardous to a book's health, the editors of this one have succeeded admirably in overcoming the main risk, a lack of cohesiveness . Like another committee-authored book, Assessing Genetic Risks (Committee of the Institute of Medicine, 1994), this one addresses a range of issues about genetic testing, describes the related empirical data, and provides recommendations for the ethical use of genetic information and technology. Unlike the earlier work, however, Promoting Safe and Effective Genetic Testing in the United States reads as if the editors were able and willing to see that the content was integrated and consistent, with a minimal amount of repetition. Neil (Tony) Holtzman, co-editor of both books, may have been particularly motivated to insure that these qualities prevailed after his experience with the earlier tome. It strains credibility to believe that 19 members of the Task Force on Genetic Testing were involved in writing this Report. A 20th member, David Cox, explicitly disassociated himself from the final publication. However, all of the other voting and nonvoting members are authors to the extent that they participated in the discussions that generated the content and assented to its articulation. The members ofthe Task Force, chaired by Holtzman, were appointed by the Working Group on Ethical, Legal, and Social Implications (ELSI) of Human Genome Research for the U.S. Department of Energy and the National Institutes of Health to consider genetic tests, the laboratories that provide them, and their use by health care providers and consumers. Fifteen voting members were selected from groups that have "a stake in genetic testing" (p. xi); these included genetic counseling, biotechnology, health insurance, and the American Medical Association. Five nonvoting members were designated to represent agencies within the Department of Health and Human Services. The format of the book is typical of government publications: an executive summary followed by an introduction that lays out "principles" underlying the analysis, chapters that elaborate on the main topics, a summary, conclusions, and appendices . The four central chapters address the safety and effectiveness of new genetics tests, how to ensure the quality of laboratories that perform them, how to improve provider understanding of genetic testing, and how to increase knowledge and use of genetic tests for rare inherited disorders. Bold type is sprinkled generously Üiroughout the book to signal recommendations. To the authors, the first recommendation mentioned in the Summary seems most important: "that the Secretary of Health and Human Services appoint an advisory committee on genetic testing to be instrumental in implementing the recommendations of this Task Force" 590 Book Reviews (p. 87) . In other words, this Task Force recommends creation ofanother (standing) task force. Like Assessing Genetic Risks, Promoting Safe and Effective Genetic Testing in the United States offers its recommendations without any developed arguments to support them. In both books, the term "principle" is used loosely to describe varying degrees of generality. However, the Institute of Medicine committee stipulates four ethical principles that could be tapped in elaborating support for its recommendations : autonomy, privacy, confidentiality, and equity. In contrast, the Task Force mixes topics or procedures with ethical concepts, identifying each of the following as "overarching principles" (p. 12): informed consent, prenatal and carrier testing, testing of children, confidentiality, discrimination, and consumer involvement in policy making. Even if these "principles" represented the same level of generality, their meanings are more overlapping than overarching. The ethical principles of beneficence and nonmaleficence, while not articulated as such, underlie the book's focus on safety and effectiveness. Despite its flaws, Promoting Safe and Effective Genetic Testing in the United States is a valuable resource for anyone to whom genetic tests are professionally or personally relevant. As tests proliferate, that number is constantly increasing. The information provided throughout the text and in the appendices seems more useful than the multiple recommendations, because most of the latter are obvious or overly general . Few readers are likely to disagree with the Task Force's suggestions...