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Justice and the Human Genome Project

University of California Press

In many ways, the current project to map and sequence the human genome appears to be that very kind of encyclopedic enterprise that Francis Bacon recommended in 1620 as part of his proposed "Great Instauration" of science.1 Against a science he saw mired in and confounded by philosophical speculation, Bacon advocated a painstaking study of the material—not the metaphysical—properties of the world. He thus recommended exhaustive accounts of rainbows, frost, floods, birds, sleep, dreams, drugs, baking, bodily growth, medicine, wine, and so on for page after page. Given the magnitude of the studies he foresaw, it is not surprising that Bacon, Lord Chancellor under James I and VI, pleaded for state funding of research, thereby giving him the distinction of being the "father" of the federal research grant. He thought the costs of the "natural histories" he proposed would be well justified because they would lead to human power over the world, a world in which human interests were freed from the vicissitudes of fate and protected and promoted by human knowledge.2 The goal of human study, he said, was "the knowledge of causes, and secret motions of things; and the enlarging of the bounds of human empire, to the effecting of all things possible."3 And a society devoted to these pursuits would be, in the end, a "New Atlantis."

The human genome project appears to be a Baconian enterprise ("big science" we call it today), not only in its ambitions, its enormous costs, and the necessary involvement of government but also in its capacity to offer knowledge about the secret motion of things biological. There are questions, of course, about whether this initia-

tive will or should lead to the effecting of all things possible, and there are also questions about whether these ambitions, costs, and outcomes will advance our own society toward its New Atlantis. The New Atlantis described by Bacon, after all, was a harmonious, homogeneous utopia protected from the strife of the world by its remote distance from world events. It was a society dedicated to a single religion. Our own society, in contrast, is in many ways at the mercy of events wherever they might occur in the world. It is also a society deeply marked and divided by religion, race, economics, natural resources, culture, politics, and disease.

There is already a growing body of moral analysis that has attempted to characterize the quandaries and challenges of the genome project, and this analysis has raised many of the relevant questions even if it has not been able to offer definitive answers. Some of this analysis has been at pains to point out undesirable consequences of possible uses of genomic data, especially in discriminatory social practices. While it is important to be aware of these outcomes, it seems to me that what moral philosophy can also profitably contribute to the discussion is something other than prophesies of possible objectionable use of genomic characterizations. Health care workers, insurance analysts, attorneys, and other involved parties are often better situated than philosophers to predict unhappy consequences of the genome project. What philosophers can contribute seems to lie in another vein: interpreting the meaning of the project and its uses. I therefore want to identify here some of what I consider to be the main moral problematics of the genome project itself, issues that have to do with the nature and consequences of our commitment to this project. I also want to consider the genome project insofar as it raises philosophical questions about the nature and meaning of difference . This is a difficult task and one that is only begun here, but it is one that attempts, first, to get at the question of what it means to be engaged in a project to map and sequence the human genome and to ask, second, in what ways the genome project will work for or against human difference and alter the way in which we understand the worth of the individual in relationship to the social order.

Alexander M. Capron has observed that the genome project itself has proved of little ethical interest: "My personal sense is that persons

assigned to discuss the ethics of genome mapping quickly find themselves discussing related subjects, because the topic-in-chief is regarded as pretty thin gruel."4 Like most analysts, Capron therefore underlines the importance of analyzing the uses of the information the genome project is expected to generate.5 In particular, in an Emory Law Journal article, he expresses concern about ownership and control over knowledge generated by the project. Capron is surely right in noting the way in which commentators have shied away from discussing "the topic-in-chief." Indeed, most ethical analysis of the genome project typically shies away from any suggestion that the project itself is morally problematic.

But is it true that there is little or no moral substance in the genome project itself? I think such a conclusion should be resisted; on the contrary, there are some important moral problematics to be considered. There are, first of all, questions about whether this venture is something that a society ought to undertake given other pressing needs. To what extent, after all, should a society undertake a project whose beneficiaries, in the main, exist in the future? James D. Watson and Robert Mullan Cook-Deegan have said that the primary objective of the human genome project is to aid in the assault on disease.6 But that assault will not, for the most part, benefit living people, and a financial commitment of the kind involved in the genome project may mean that care will not be offered to actually existing people who here and now suffer from various diseases or natural or social ills. While it may be wise to prepare a future in which genetic diseases do not cause the damage they do now, it is not clear that there is anything but a supererogatory duty to do so. Thus, the question of the genome project may be put into relief this way: what is the moral argument to be offered that the suffering of people here and now can be sacrificed to expected benefits in the future?

In this vein, it is also worth considering whether and to what extent the genome project may amount to an evasion of contemporary social and medical problems, problems that we could address and possibly overcome if only we so chose. Should we, after all, be trying to develop methods to identify and eradicate genetically defective individuals through prenatal and neonatal genetic testing (and possibly abortion) rather than undertaking social accommodation of genetically disadvantaged people, finding what ways we can to offer them hope and happiness? Of course, there would be no relief for some

of the genetically disadvantaged, but it is still worth wondering to what extent the living have priority over the future-living.

Even if there are possible answers to these questions, still the genome project may be problematic from another quarter. The genome project is "big science" and even bigger consequences are expected from it, but insofar as the project represents a coordinated plan of study, the potential...