Preface

Timothy F. Murphy and Marc A. Lappé

The essays gathered in this volume were among those presented at a conference titled "Justice and the Human Genome" held in Chicago in early November 1991. The goal of that conference, sponsored by the U.S. Department of Energy and the University of Illinois at Chicago, was to consider questions of justice as they are and will be raised by the human genome project, that ambitious multinational effort to map and sequence the entire human genome. To achieve its goal of identifying and elucidating the challenges of justice inherent in genomic research and its social applications, the conference drew together in one forum members from academia, medicine, and industry in order to sketch out central questions that will follow the emergence of genomic profiling capabilities.

The essays in this volume address theoretical and practical concerns relative to the meaning of genomic research. Whether the authors are concerned with the history of eugenics, the meaning of individual differences, or access to health care, they are all united in their concern about the impact of genomic research on individual persons and their place in specific ethnic and cultural groups. If there is a common goal underlying the analyses here, it is the protection of individual persons and cultural groups from unjust social prejudices and arrangements that would burden individual choice or degrade the worth of certain groups defined in invidious ways. It is perhaps a measure of the age that we express as much anxiety as hope with regards to the human genome project. It is the goal of this volume to resist inappropriate anxiety by offering moral analysis that resists facile and corrupting uses of genomic research but that nevertheless emphasizes the very real significance and importance of genomic research.

While many of the concerns raised about the genome project have a fantastic quality to them, Timothy F. Murphy, in "The Genome Project and the Meaning of Difference," nevertheless cautions

against certain subtle effects of a coordinated scientific project whose goal is a characterization of the human genome. By reason of the conforming forces involved in carrying out a centrally coordinated program of research and the inevitable influence of a "standard" human genome in biomedical thinking, genomic research may have the effect of working against incentives to scientific progress and tolerance of human diversity. In a cautionary vein, he notes this paradox of science: even as it advances the realm of human knowledge and offers ways to alleviate human suffering, it may have the effect of foreclosing avenues of scientific novelty and of raising barriers to acceptance of moral and human diversity.

Perhaps part of the special moral concern that has been expressed about genomic research belongs to the decidedly problematic history of eugenics movements. In "Eugenics and the Human Genome Project: Is the Past Prologue?" Daniel J. Kevles addresses this concern, noting the way in which eugenics movements in American and world history have been linked to intolerable moral judgments about the worth and worthlessness of individuals. Despite the many dark moments in the history of eugenics, Kevles does not see that the current genome project is vulnerable to the kind of tendentious distinctions drawn by eugenicists in the past because of the democratic nature of our social institutions, because there are now powerful antieugenic constituencies, because we now better understand that desirable and complex human traits are not amenable to simple-minded genetic interventions, and because we now better appreciate the horrors of past eugenic brutalities.

Arthur L. Caplan, in "Handle with Care: Race, Class, and Genetics," likewise notes the way in which the future of genomic studies is often discussed in terms of the villainy of recent genetic history and politics. But, he argues, genomic research need not fall victim to the prejudicial ideologies of the past, especially if public debate protects people whose social circumstances may be made vulnerable by genomic studies. In a kind of thought experiment, Caplan outlines certain scenarios that might occur in the future, scenarios that point out ways in which genomic profiling can generate dilemmas about identity, affirmative action, privacy, immigration, and reproductive choices. It becomes clear that the history of genetic study may not confine genomic research, but neither will genomic research be free of troubling social choices as to its fair and equitable use.

In "Public Choices and Private Choices: Legal Regulation of Genetic Testing," Lori B. Andrews reviews certain legal and policy precedents that frame the context in which decisions about genetic testing will be made in the future. She pays special attention to genetic testing in reproduction, noting ways in which the law either permits, forbids, or requires certain forms of reproductive testing and choices and also noting the ways in which individual desires may conflict with social objectives. She concludes this review by observing that genetic testing may well threaten, as other forces have, that traditional and comfortable distinction we have long drawn between the private and the public.

Looking at an idea that has a central importance in American political and social thought, in "Rules for Gene Banks: Protecting Privacy in the Genetics Age," George J. Annas considers the implications of "gene banks" for privacy. Gene banks would ostensibly store genetic samples or genomic profiles of individuals, and Annas proposes that certain respected liberties can only be maintained in the age of gene banking through considered and swift deliberation of rules governing the collection and storage of genetic materials. Toward that end, he proposes certain rules for consideration, rules that require public notice of the establishment of gene banks, informed consent in their policies, and restricted use of their samples.

Robert J. Pokorski, in "Uses of Genetic Information by Private Insurers," identifies an issue of genomic research that is of central concern to the insurance industry: access to the genomic profiling of individuals that genome research is expected to make possible. The use of genomic profiling is of special concern to a society in which the burdens of health care (and life insurance) are left to individual resources and employers. Although there may be a fear that genomic profiling will be used prejudicially against people at risk of genetic disease, Pokorski argues that insurers need access to such information to set insurance costs according to the actual degree of risk that belongs to given individuals. Access to genomic profiling will preserve the principle of equity that Pokorski thinks essential to the ability of insurers to protect not only their own solvency but also their continued ability to provide insurance benefits in ways that do not unjustly burden people less at risk of genetic disadvantages.

In contrast to this position, Norman Daniels raises an important

philosophical question by asking to what extent it is fair to let people benefit from personal advantages when those advantages have their origin in a random genetic distribution. One's genetic predisposition to disease or health, after all, is a matter of biological accident. It is for this reason that Daniels prefers to emphasize the significance of "adverse selection" not as a matter of securing coverage at rates disproportionately unprofitable for insurers but as a matter of extending coverage at disproportionately profitable rates. Daniels then argues that the standards of equity inherent in current insurance programs violate certain moral standards and do not protect equality of opportunity in health. He therefore rejects the view that health advantages or disadvantages should be treated like mere economic assets and argues instead for a view that requires the protection of health in ways independent of its genetic origin. He also notes some implications of genomic research for public understandings of the nature of responsibility for health, especially since genomic research may elicit either fatalism or hypercaution as regards the relationship between genes and health.

In "Just Genetics: A Problem Agenda," Leonard M. Fleck addresses the matter of emerging genetic technologies that may both eliminate genetic disabilities and enhance genetic superiority. While he rightly argues that there is sometimes an unclear line between what constitutes disability and enhancement, he nevertheless thinks that genetic technologies that aim at the elimination of clear genetic deficits ought to have moral priority over other biomedical interventions. Fleck thinks that from a disinterested point of view, people would assign priority to the development of genetic technologies over other biomedical technologies—such as artificial hearts—since genetic disabilities end in profound disabilities and premature death for which there are no other means of avoidance, social remedy, or recompense. Moreover, such a priority would also respect the principle of arranging social benefits to favor those who are least well off.

In the essay closing the volume, Marc Lappé points out ways in which genomic research will raise and sharpen questions of social equity not only with regards to screening and employment but also to questions of compensation. Genomic profiling can be expected to establish differences not only among individuals but also among groups, thereby raising questions of social equity in the way we value and disvalue heritable traits. He notes, too, ways in which genomic

differences may extend questions of moral equity to domains we at present believe belong to accidents of nature.

All the essays raise issues that are likely to continue as matters of debate and concern even as we advance further and further into the genomic era. Part of what makes this volume unique is what has made the human genome project unique from its inception: its consideration of the ethical, legal, and social implications of genomic research before that research has completed its tasks and before genomic applications have begun to alter social and institutional arrangements and policies. The human genome project will be no secretive Manhattan Project whose hidden research ultimately changed the political fate of the world forever and whose influences are still being measured to this day. The human genome project is by design self-conscious: its design anticipates and subjects the future to deliberation. This kind of planned moral and social deliberation—and the funding it was given—is without precedent in the history of scientific research. These essays must not be seen, then, as only a contribution to the ethical, legal, and social studies of the genome project. These essays are also themselves part of a grand experiment in attempting to assess in advance the significance of scientific research for the moral and political concepts by which we define ourselves. The challenge of these essays is thus twofold: to illuminate the genome project itself and to justify the hope placed in a study of this kind so that science and society can go forward in equitable relations. It is in the spirit of this challenge that we offer the essays that follow.