Justice & the Human Genome Project - Hardcover

Murphy, Timothy F.

Hardcover

ISBN 10: 0520083636 ISBN 13: 9780520083639

Publisher: University of California Press, 1994

Synopsis

The Human Genome Project is an expensive, ambitious and controversial attempt to locate and map every one of the approximately 100,000 genes in the human body. If it works, and we are able, for instance, to identify markers for genetic disease long before they develop, who will have the right to obtain such information? What will be the consequences for health care, health insurance, employability and research priorities? And, more broadly, how will attitudes toward human differences be affected, morally and socially, by the setting of a genetic "standard"? The compatibility of individual rights and genetic fairness is challenged by the technological possibilities of the future, making it difficult to create an agenda for a "just genetics." Beginning with an account of the utopian dreams and authoritarian tendencies of historical eugenics movements, this book's nine essays probe the potential social uses and abuses of detailed genetic information.

About this title

About the Author

Timothy F. Murphy is Assistant Professor of Philosophy in the Biomedical Sciences and Marc A. Lappé is Professor of Health Policy and Ethics at the University of Illinois College of Medicine. Murphy is co-editor of Writing AIDS: Gay Literature, Language and Analysis (1992), and Lappé is the author of Chemical Deception (1991).

From the Back Cover

"In my view, [Murphy] has written the most incisive general critical essay on the Human Genome Project yet to appear."—Troy Duster, Director, Institute for the Study of Social Change, University of California, Berkeley

From the Inside Flap

"In my view, [Murphy] has written the most incisive general critical essay on the Human Genome Project yet to appear."Troy Duster, Director, Institute for the Study of Social Change, University of California, Berkeley

Excerpt. © Reprinted by permission. All rights reserved.

Justice and the Human Genome Project

By Timothy F. Murphy and Marc A. Lappé

University of California Press

Copyright © 1994 Timothy F. Murphy and Marc A. Lappé
All right reserved.
ISBN: 0520083636


1—
The Genome Project and the Meaning of Difference
Timothy F. Murphy

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.

Moral Aspects of the Genome Project

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 exists for its functioning as a scientific and moral ideology because it is committed to a single way of representing genetic information and carrying with it the seeds of its own moral authority. The genome project, therefore, has the potential of functioning as an ideology with all the undesirable effects of ideology in conforming people and their expectations.7

Although there have been other government-sponsored programs of scientific study before it, the human genome project has special moral significance insofar as it may suggest a precedent that future scientific study is properly a matter of large-scale, federally financed, centrally coordinated projects. It is not wrong, of course, that the government should undertake such projects of scientific study; the question is whether this kind of undertaking is the best way for science and scientists to proceed. With its economic supports, the federal government has in effect created a scientific orthodoxy, and it is worth wondering whether this approach will have the effect of counterproductively suppressing the element of novelty so important to scientific advance. It is important to keep in mind, after all, that every time there are converts to a scientific project, voices of dissent capable of correcting and advancing human knowledge and wisdom may be lost.8

But perhaps these questions do not seem essential or significant as matters relevant to the genome project itself. Maybe they are not, but perhaps there is another explanation of why these questions have not been raised with special urgency. Perhaps it is because we commentators and analysts of the genome project already share common answers to such questions; our assumptions in common belie deep divisions of opinion. Perhaps there is no dwelling on moral aspects of the genome project per se because there are no disputants to conduct a debate about the project, this because the nation's intelligentsia has almost to a person already and predictably come down on the side of the project. In an age entirely comfortable with the promises and priorities of science, we do not have the sense that

science (in contrast to its uses) is morally problematic. Except for research that may jeopardize people without their consent, we seem to have lost the sense that there can be research that "goes too far." We seem to have adopted as our own that single internal imperative of science: to know everything. We are prepared to wait until after the work of science is done to deal with any unhappy consequences it may make possible, and we have faith that our social institutions can absorb limitless advances in biomedical, physical, and social science. Therefore, far from being without moral interest, it seems to me that the genome project is remarkable as evidence of our collective and uniform moral and scientific expectations.

There is no reason, of course, why serious arguments against the genome project could not be raised on grounds of resource allocation, scientific openness, limits of inquiry, and possibly religious reasons as well. That they have not says more about us as a society than it does about the nature of the genome project itself. That there is no chorus of voices raised against the genome project per se does not mean that the project is itself without moral significance. The silence here is more likely the result of our society's homogeneous views as regards the morality of scientific inquiry in general or perhaps the result of the erroneous view that scientific inquiry is itself value free and only morally significant with regards to its consequences. Given approximately equivalent educational opportunities and social ideals, we perforce share common moral views, which is to say that our moral assumptions and conclusions can be hidden by the very virtue of their pervasive nature. I am not suggesting that we object to the genome project for the kinds of reasons raised here; I am merely observing that what passes as a question without moral significance may simply represent pervasive moral consensus. It is different views, different interpretations, different observers that make moral values obvious and open to debate.

It is evident, therefore, that at least one major meaning of the human genome project is that we as a society continue our commitment to academically orthodox science. We continue to place our hopes for the production of knowledge, and the economic and health opportunities it will make possible, in the hands of federally sponsored scientific researchers even to the extent that we cannot foresee the extent to which such knowledge will affect our social institutions and mores. We continue to have fairly unlimited optimism

about the beneficence of science, this despite all the objectionable episodes that have occurred in research and in spite of the problems scientific research generates in its uses. We continue, in other words, to draw a clear distinction between science and its sins.

Marking and Interpreting Difference

Beyond the moral significance of the project itself, the human genome project does indeed raise many interesting individual moral questions, questions related to the use of the tests and information it will produce. For example, it will be necessary to consider the ways in which resultant genetic probes should be used in matters of employment, insurability, money lending, reproduction, counseling, and so on. Genetic characterizations will also create a new class of health costs, and the question of how these costs will be met and ranked in the nation's social priorities will need to be addressed. There will also be questions of how experimentation in correcting genetic defects should be carried out and with what priority. Perplexing questions of equitable access and informed consent in such therapies will arise.

One of the major expectations of the genome project is that its information will offer people better health. But genetic characterizations are one thing and successful medical interventions to correct genetic dysfunctions are another. It is likely that there will be considerable lag time between the identification of genetic dysfunctions and interventions that can successfully alter them. It is also unclear at the present time whether widespread use of genetic characterizations (and possible treatments) will significantly improve the health of a nation's population. After all, we already know what it would take to improve the health of a considerable portion of the nation's population; it is just that we ignore the counsels against smoking, alcohol, failure to exercise, and so on.9 Moreover, the use of genetic characterizations will not necessarily modify the course of the most socially significant diseases, such as communicable diseases. They may prove useful, on the contrary, for fairly rare occurrences that will not significantly alter the general distribution of nongenetic disease or the costs associated with such disease. These questions all deserve considerable attention as we shape policies and practices around genomic data.

But such questions do not themselves directly get at an underlying question that, in my mind, haunts the genome project. The ancient art of haruspicy attempted to divine the future through the examination of animal entrails. In our own time, are we now trying to foretell the future through the examination of "genetic entrails"? Certainly, we hope at least to be able to foretell the genetic future of particular individuals. Such a hope raises important questions regarding identity and difference. To what extent will the genome project generate new classes of human inferiority? Will the genome project generate a theoretical subjugation of genetically atypical people, born and unborn, and thereby establish difference as disease or disability? Will the genome project mark difference as an undesirable trait and justify its eradication?

The goal of the genome project is to produce a characterization of the human genetic complement in the way that anatomy produces a representation of the structural components of the human body or in the way that physiology represents bodily function. Thus, this genomic characterization will not identify the genome of a single person any more than anatomical or skeletal characterizations represent a given individual. Nevertheless, the genome project will offer a model by which to understand the functioning of genes and their relationships to particular organismal traits. And it is the existence of this model that lays the foundation for the interpretation of desirable and undesirable traits. The moral significance of the project may prove, therefore, to lie in its significance for the interpretation of health and disease, normalcy and difference.

There are many ways to represent the nature of human beings, and none of them are value neutral. Even a genomic characterization is already always determined by our social and conceptual background. What we see, therefore, in a genomic characterization of human beings depends on what we are accustomed to and interested in seeing, this for both the species as a whole and an individual in particular. There is no escaping this immersion in the social and conceptual preconditions of observation, representation, science, and language; we cannot ever hope to achieve the position of an entirely unconditioned, uninterested observer. Therefore, the moral question at issue here is not whether we can produce a value-neutral representation of human genetics but whether we can protect people from invidious interpretations of the representation that the genome project will offer.

There are many reasons to be cautious here. German philosopher Friedrich Nietzsche once observed, "What one knows of oneself —As soon as one animal sees another it measures itself against it in its mind, and men in barbarous ages did likewise. From this it follows that every man comes to know himself almost solely in regard to his powers of defence."10 Coming as it does from a philosopher who was acutely aware of the importance of individuality and difference, this observation might even be interpreted to mean that marking differences in order to assert and establish superiority is even the primal form of thought itself. And history shows that difference is often the pretext for vilification and destruction of those marked in ways others are not.

It seems to me, therefore, that if there is a central moral issue at stake in the genome project, it is whether its characterizations will permit the erosion of difference in favor of genetic uniformity, whether its characterizations will offer yet another standard of "normalcy" to be used as a justification for the extermination of difference. It is in this regard that one needs to see and consider the nature of genome mapping. Will we, in finding new ways to mark the differences between people, invite new theories of personal and social worth, theories that presuppose standards of superiority and inferiority? There are already differences enough between people that are used as pretexts for their subjugation and villification. Will the genome project enlarge the power we already have in that regard?

Given their relative accessibility, the genetic characterization of newborns and fetuses would be one of the most likely venues for the identification and extinguishing of genetic defect or difference. It is perhaps worth recalling that it was not just National Socialist Germany alone that has had its own significant eugenics history.11 Prior to World War II, the United States had its own very healthy eugenics movement. In advancing the cause of birth control, Margaret Sanger freely availed herself of language that bespeaks eugenic goals. She constantly spoke of the great number of children who should never have been born, those children who will pollute the race and drain the world of its resources.12 If there was a central task facing the nation, Sanger thought it was the task of breeding a better race: "The noblest and most difficult art of all is the raising of human thoroughbreds." Accomplishing that goal required preventing the mass birth of inferior populations who were, in her view, responsible for

the "ever-widening margins of biological waste." The goal should thus be to resist "the ever-increasing, unceasingly spawning classes of human beings who never should have been born at all," in which category she puts those whom she calls variously feeble sows' ears, the mentally and physically defective, degenerate stock, morons, the dregs of the human species, the blind, the deaf-mute, the degenerate, the nervous, the vicious, the idiotic, the imbecilic, the cretins, the epileptics, the feeble-minded, and in general the dead weight of human waste.

After the defeat of National Socialist Germany, the formal eugenics movement collapsed almost without a trace in the United States. But concern about defective children and adults lingers on in a different form. Whereas the eugenics movement offered its counsels in the language of preserving the race and husbanding resources, concern about the lives of the defective today is offered primarily in the language of "the best interests of the child." Fetuses are aborted and certain newborns are allowed to die, according to those making the decisions, because that course of action is in their "best interest." Moreover, defective children who survive are sometimes said to be the victims of "wrongful birth" or even "wrongful life."

Of course, genetic characterizations cannot predict with complete certainty which children will and will not express genetic disease, this because of the roles human variability and environmental differences play in the expression of disease. Genetic characterizations will, however, highlight possible differences even where that difference may not be destined to occur. In an effort, to avoid even the possibility of disorders, some parents may wish to abort or let die those children whose genomic characterizations are ambiguous. The moral question worth taking away from considerations of this kind is this: will the genomic project cast a hermeneutic of suspicion over all people and especially children? How many tests will a man have to pass to be judged fit for employment and the resultant social and personal benefits? How many tests will a woman have to pass to buy health or life insurance? How many tests will a child have to pass to be wanted, born, and loved?

One other aspect of the question worth considering here is whether or not the genome project will offer a way to conform people to the existing social order. This longstanding concern about the "engineering" of people is surely relevant to the genome project if

people themselves are viewed as burdens when it is the design of society's institutions that is at fault in meeting social needs, in meeting the needs of people as they actually exist with all their diseases, defects, and differences. The question is whether the genome project will be put to the use of establishing genetic difference as personal fallibility rather than as a shared aspect of human finitude.

Regardless of the use of genomic characterizations and reproductive interventions, what of persons with genetic liabilities who are born nevertheless? Will they be seen as failures of the system, as an incentive to expand the use of genetic profiling prenatally or at birth? Or as an incentive to routine, even compulsory, genomic profiling? Will they be seen as indictments of the nation's health policy? Will they be further stigmatized as drains on society and failures in themselves because their birth defects were in principle avoidable? And how, in such circumstances, can the presumption of social equality be preserved?

It is not only in these ways that people's lives and differences are stake here. The question of the moral responsibilities of parents is also implicated insofar as the existence of genetic characterizations might also raise the threshold of responsible parenthood. How, for example, should parents who decline or resist such testing for eliminable or treatable genetic disease be seen? Will they be seen as exercising rights properly their own or as misguided people punishing their own children to advance their own private beliefs? Will their actions invite legislatures and courts to impose standards of care here? It is also worth wondering whether the availability of genomic characterizations will widen the gap between have and have-not parents. Will genetic disease become another affliction of the poor?

All these issues implicate the question of how we will understand and interpret difference. The self is bordered by differences that are essential to individuation; marking difference is an irreducible component of individuation. And it is the meaning of difference that I regard as a central moral question of the human genome project. The question is whether we will find in genetic characterizations differences that divide us further even as we lift the burden of genetic suffering. To be sure, I do not wish anyone to suffer from genetic disease for the mere sake of maintaining difference; but I do hope that we can preserve the lessons of those differences as lessons otherwise unlearned.

Conclusions

In 1660, French philosopher and mathematician Blaise Pascal wrote an essay called "Prayer to Ask God for the Right Use of Sickness."13 The title here is problematic to contemporary consciousness. The right use of sickness? What could this signify? That if there is a right use of sickness, there is also a wrong use of sickness? That there is a purpose to sickness at all? However strange the questions might appear today, in Pascal's view, sickness could be put to the use of personal transformation and was useful in guiding one to correct moral priorities.

It is fair to say, in contrast, that the operational interpretation of contemporary biomedicine, reflecting our own pervasive social judgment, is that disease and suffering are evils to be resisted, threats to our happiness, events without meaning that we would do better to extinguish and avoid because there is nothing to learn from then, no purpose, no achievement in their endurance. But whatever else they may or may not be, suffering and other marks of difference teach us lessons not otherwise available about the nature and meaning of our lives. There is, of course, absurd suffering and pointless difference. But it is also true that we do not know what our lives are worth if we do not countenance the price we would be willing to pay for them, the difference we would be willing to endure for them.

The question before us then is one Pascal would have understood: what is the right use of the human genome project? Will it be used to prop the existing scientific status quo and perhaps thereby impede the aims of science? Will it be used in a campaign against difference, or will it be used to map the fullness and plenitude of existence? Will it be used as a strategem to create a new kind of inferiority? Or will we be able to understand the way in which genomic characterizations represent one possible map of a small corner of the vastness of existence? Will the goal of biomedicine be the leveling of all genetic difference in order to accommodate the social requirements of the time?

It seems to me that we should not lose sight of some of the fundamental paradoxes of science as we consider judgment on the genome project. Even as it offers some answers, science also creates uncertainty; even as it conquers some social evils, it also may cause evasion of social problems. While science opens vistas of the world to

our experience, it also imposes standards of conformity in scientists and what they study. And it not only offers an explanation but also advances a cause.

As a matter of moral analysis, it seems important to make the case that the differences identified by genomic mapping should not be used as a pretext for vilification, whether that vilification is couched in the language of racial impurity or human health; that the social needs of the day not be mistaken as ultimate human needs; and that we do not demand answers from the genome project to questions for which it has no authority. I hope instead that we continue to recognize that differences among individuals are rare and important goods, that the genetically atypical are important scientific and moral resources, that there is in individual human and social life a plenitude of difference that should be preserved, and that there are lessons in difference and suffering it would be unwise to bypass altogether.

In the Pensées , Pascal remarked that "knowledge of physical science will not console me for ignorance of morality in time of affliction, but knowledge of morality will always console me for ignorance of physical science."14 I take Pascal to have meant that a knowledge of, for example, the genetic molecular processes of humans or any assemblage, however large, of simply factual information must necessarily fail in telling us what it is that we are worth, what it is that we ought to seek, and how we should live. Moral philosophy is therefore crucial because it concerns the standards by which we judge the nature and significance of our actions. The genome project will significantly enlarge the bounds of the human empire, increasing our genetic knowledge ten million fold. It will eventually offer insight into the secret motion of things. It is dubious, though, whether the genome project will enable us to effect all things possible. But given the lessons of history, it is not even clear that we should aspire to the effecting of all things possible. I think that we should not effect, even if it were possible, the extinction of difference. On the contrary, moral philosophy seems to require that we find what ways there are in the use of research projects and their consequences to preserve the lessons of difference, for it is only individual difference that can throw the moral order of the universe into relief and can let us know who in fact we are.

Continues...

Excerpted from Justice and the Human Genome Projectby Timothy F. Murphy and Marc A. Lappé Copyright © 1994 by Timothy F. Murphy and Marc A. Lappé. Excerpted by permission.
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Edition details

• Publisher: University of California Press
• Publication date: 1994
• Language: English
• ISBN 10: 0520083636
• ISBN 13: 9780520083639
• Binding: Hardcover
• Number of pages: 190