Areen, Judith C.

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Review of Reproductive Genetics and the Law

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Georgetown University Law Center Scholarship @ GEORGETOWN LAW 1988 Review of Reproductive Genetics and the Law Judith C. Areen Georgetown University Law Center, areen@law.georgetown.edu   This paper can be downloaded free of charge from: https://scholarship.law.georgetown.edu/facpub/1536  Judith Areen, Book Review, 28 Jurimetrics J. 491 (1988) (reviewing Sherman Elias & George J. Annas, Reproductive Genetics and the Law (1987)). This open-access article is brought to you by the Georgetown Law Library. Posted with permission of the author. Follow this and additional works at: https://scholarship.law.georgetown.edu/facpub  Part of the Health Law and Policy Commons REPRODUCTIVE GENETICS AND THE LAWSherman Elias & George J. AnnasYear Book Medical Publishers, 1987323 pages, $35.00Reviewed byJudith Areen*How many goodly creatures are there here!How beauteous mankind is! 0 brave new world,That has such people in 't!-Miranda, The Tempest, Act V:Sc 1For many, the phrase "brave new world" evokes images of the chillingsociety envisioned by novelist Aldous Huxley in which human beings are engi-neered in the laboratory. But as Professor Albert Jonsen reminds us in the intro-duction to Reproductive Genetics and the Law, the phrase was first used byShakespeare in The Tempest when Miranda first sees normal human beings onthe remote island where she has been reared along with the monstrous Caliban,the spirit Ariel, and other creatures of her father's magic art.The authors of Reproductive Genetics and the Law, Sherman Elias andGeorge Annas, introduce us to a brave new world that is closer in spirit toShakespeare than Huxley, peopled as it is with parents, infants, and physiciansstriving to be "goodly creatures" in the sense of being free from fatal geneticdefects. The decision to place the extraordinary advances that have occurred inour understanding of human genetics in the familiar world of medicine enablesthe authors to underscore the enormous potential for relief of pain and sufferingoffered by recent advances in genetics without sacrificing the opportunity tocriticize aspects of the new science that could lead to abuse.The authors announce at the beginning that their goal is to avoid the profes-*Professor of Law and Professor of Community and Family Medicine, Georgetown Univer-sity.SUMMER 1988sional bias so common in the literature: medical and scientific writers tend toignore social policy issues, and lawyers and ethicists tend to misunderstand orignore relevant scientific facts (p. xi). This fruitful, interdisciplinary collabo-ration of obstetrician/geneticist and health lawyer/medical ethicist more thanlives up to the goal, containing as it does concise, accurate and useful informa-tion about human genetics and relevant areas of law. The scope of the book isremarkably ambitious, moreover, for it covers not only such matters as geneticscreening and gene therapy, but also contains a chapter on "Reproductive Lib-erty," one on "Treatment of Handicapped Newborns," and one on "GeneTherapy." There is even a chapter on "Noncoital Reproduction" that dis-cusses such new reproductive technologies as in vitro fertilization and surro-gate mothers. The authors have included a judicious selection of illustrationsand photographs and chapter references that serve to guide the interestedreader to much more detailed discussions of both scientific and legal matters.Although the emphasis is on scientific and legal facts, ethical and policyissues are not neglected. In some of the more contentious areas, the authorspresent the arguments on both (or more accurately, all) sides of an issue. Onother points, however, they take a very clear stand. Thus, they accurately notethat although "we have strongly argued in favor of attempting to identify andcure genetic diseases, we have consistently urged that this only be done with theinformed consent of individual patients, and with informed public discussion ofthe myriad issues and interests involved" (p. 270). Some readers may be disap-pointed by the evident preoccupation with what might be termed proceduralvalues, but the choice may also make the book a more useful source for policy-makers.My only complaint is that the book came out too soon to wrestle with whatis likely to be the biggest (at least in terms of dollars spent) genetic undertakingof our lifetime: the decision whether to commit as much as three billion dollarsto sequencing (mapping) the human genome. The human genome project is in-tended to determine the identity, position, and function of the more than100,000 genes in the human body. The map could thus significantly advanceour understanding of how specific gene defects produce diseases such as can-cer.There are a growing number of signs that the project will go forward.Early this year, the National Research Council of the National Academy of Sci-ence issued a report recommending that the project go forward, and recom-mending that Congress approve an additional $200 million annually for fifteenyears to fund the project.' Congress has already appropriated more than $17million to the National Institutes of Health (NIH) to formulate long-range plansfor the project.2The only objections to the project until very recently have been raised by'The Washington Post, Feb. 12, 1988, at A3, col. 1.2Palca, NIH Gearing Up to Tackle the Human Genome, 332 NATURE 99 (1988).JURIMETRICS JOURNALresearchers who fear that such a huge project will divert funding from otherbiomedical research.3 Yet as the National Research Council report noted, "aconcerted effort to map and sequence the human genome would have profoundsocial significance." 4 For example, "diagnoses that trace diseases to our genescan also convey stigma and set the scene for social prejudice." 5 The committeealso cautioned that gene maps might be used by companies or insurers to screenout individuals who present occupational or insurance risks. The humangenome project thus raises far more significant issues than the proper balanceof power between large and small research projects.Fortunately, a coalition of individuals and organizations representing civilrights groups, organized labor, disability rights, women's organizations, pub-lic interest organizations, consumer and health organizations, and religiousgroups has been formed to seek the establishment of a congressional board andcitizens committee to address the public policy implications of the project.6Surely we need to develop a public policy as sophisticated as our science onthese fundamental human matters. The Elias-Annas collaboration demon-strates that it is possible to link the two. I hope they will undertake a secondedition of this fine volume in order to give us the benefit of their thinking onthese latest developments.3The Washington Post, Feb. 12, 1988, at A3, col. 1.4National Research Council, NEWSREPORT 5 (March 1988).51d.6Coalition Seeks Panel to Study Impact of Mapping Human Genome, CHRONICLE OF HIGHEREDUCATION, April 27, 1988, at A8, col. 1. The author is a participant in the coalition.SUMMER 1988

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