Immunology and Cell Biology (1992) 70, 363-368

Review Value issues in biomedical science: Public concerns an professional complacency A.J. D.BELLETT Dii/ision of Cell Biology, John Curtin School ofMedical Research^ Canberra, Australian Capital Territory, Australia Summary Biomedical research was once an unquestioned good, and generous funding for a short time allowed researchers to work on whatever interested them. Two contradictory pressures have changed this. As costs have risen and economic rationalism has become politically dominant, governments, private corporations and granting agencies have increasingly demanded compliance with their own priorities, instrumental values and performance criteria. On the other hand, social and ethical critics have characterized hiomedical research as being out of touch with real health needs and community values and as being an agent of social control that entrenches the power of a technocratic hegemony. The profession has largely acquiesced in bureaucratic and corporate intervention in exchange for continued funding, and assumed that social concerns could be allayed by 'top down' paternalistic education of the public. However, this response tends to add weight to the criticism that biomedicine is an agent of social control. What is needed is a spirited defence of the value of independent scholarship and research that is not limited to science but includes the humanities. Equally important is a process of community education in which scientists not only transmit their knowledge and enthusiasm to the public, but themselves become open to the social and ethical concerns of the community. Key words: community relations, ethics, managerialism, radical materialism, technocratic power.

Introduction increasing separation of science from other aspects of culture has been characteristic of European societies since the enlightenment. The motive, according to Toulmin,' was the search for certainty and universality of knowledge as a basis for social order as a reaction to the devastating and apparently unresolvable conflicts in religious and political life that characterized the reformation. The resulting isolation of science had many beneficial effects for scientists. It was possible for researchers to

work on a problem that interested and motivated them without worrying about the philosophical justification of the whole approach or its social and political implications. Science was protected from overt ecclesiastical or political control, and this freedom resulted inter alia in an unprecedented period of growth in the understanding of human biology and the application of that knowledge in medicine. However, the cultural isolation and specialization of science also allowed the development of complacency and the acceptance or a number of myths. These include the notions

Correspondence: A. J. D. Bellett, Division of Cell Biology, John Curtin School of Medical Research, PO Box 334, Canberra, ACT 2601, Australia. Accepted for publication 30 July 1992.

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that science is value-free but paradoxically valuable in its own right, and that science is a disembodied cognitive process unaffected by the turbulent flow of social life. Related to this is the assumption that technological intervention into any aspect of human or animal life is justified by its 'scientific rationality' and requires only self-regulation by experts to ensure that it is not misused. There are a number of reasons why this comfortable complacency has been challenged, and biomedical science in particular now finds itself the focus of intense social and ethical debate. Philosophical and sociological work has shown that the assumption that science is a value-free cognitive system that produces universal truths is untenable. Science differs in emphasis but not in kind from other human belief systems. It is a human social construct and as such involves choices about how to spend time, energy and resources." These choices must be justified within a wider social context and in competition with other possible uses of available resources. Such competition inevitably involves rival values, interests and powers as well as different perceptions of reality and of desirable social structures."* The recent debate about biomedical science has been dominated by two voices. On one hand a strongly hierarchical culture of managerial interventionists with instrumental values and a competitive market model of society want to convert all research into a centrally controlled and efficient producer of marketable products. On the other hand, an egalitarian culture of Foucaltian critics question the motives of the researchers and their managers and the use of biomedicine as an agent of social control."*'^ These critics form a loose coalition with feminists, those who question the ethics of unrestrained technological intervention in human life, those who oppose the use of animals in research, and those who fear that the hubris and lack of values of scientists are likely to result in an environmental and/or health catastrophe.^"'^ In this article I shall suggest that the failure of the profession to articulate a coherent system of noninstrumental values, and the tendency to accept managerial priorities in return for security of funding, have both contributed to the legitimacy of social and ethical critiques.

The pressure to conform to centrally imposed instrumental values As biomedical science has expanded and the complexity of its technologies have increased, so has its cost. This has required that its activities become increasingly institutionalized and financed by large organizations with the ability to fund such expensive undertakings. A halt to expansion was inevitable. However, the Government bureaucracies and private corporations that increasingly control scientific research are currently highly hierarchical cultures with instrumental values and a competitive market model of society. They give priority in funding to research they believe they can control and which they perceive as conforming to their model of a market producing competing consumable products. The extent to which such market-oriented managerialism can go is shown by the abolition of Government research instrumentalities and the tenure of their staff by the New Zealand Goverment, and the requirement that 'providers' of research bid for short-term contracts for research 'outputs' specified by the Government. There is current debate as to whether university research and the Health Research Council should be included in this system, in which case the Ministry of Research, Science and Technology would control all scientific research in the country. Even if decisions are delegated to granting agencies that are in principle committed to fostering excellence, creativity, diversity and originality in research, it is naive to think that those who control such agencies are likely to retain power if they consistently ignore the policies and values of the institutions that provide the funds. Peer review, like science itself, has a political dimension. It is, of course, reasonable that an institution be accountable to its patron in terms of the quality of its research. However, keeping the review process free from conflicts of interest and political influence is difficult. For instance, the Report of the Australian Senate Standing Committee on Employment, Education and Training Inquiry into Administrative and Financial Control of the John Curtin School of Medical Research'" identified a number of deficiencies

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in the review processes that led the Minister responsible to transfer funding from the Department of Education to that of Health, and to attempt to transfer effective control from the Council of the Australian National University to the National Health and Medical Research Council. On the whole, the biomedical research profession in Australia has acquiesced in increasingly direct control of research by managerialists, providing the level of funding is maintained. This I believe to be dangerous and mistaken. There is, of course, a role for directed and applied research in organizations such as Research Institutes and CSIRO, although it needs a foundation of basic research to be effective in the long term. The exploitation of practical applications of research in universities is to be welcomed. However, there has been remarkably little defence of the value of independent scholarship and research in universities and other teaching institutions. What defences there have been of basic research have concentrated on the argument that basic scientific research is the best way to get practical applications." This is probably true. However, to defend basic research solely on this ground is to accept the myopic perspective of the managerialists and to agree that the only value of knowledge is its marketable practical applications. This view is as threatening to the humanities as it is to basic science. Knowledge is better understood as a shareable gift than as a marketable product.'^ The diversity of subject matter and opinion free research and scholarship they generate, and the climate of open exchange and sharing of ideas in which they flourish, are hallmarks of a free and healthy culture. Basic scientific research, therefore, has a cultural value equal to that of scholarship in Other fields but which tends to be forgotten because of potential practical applications. For instance, the impact that theories of human evolution and ecology have had on our perception of the human situation and our relationship to the rest of the biosphere is probably much more important than any possible practical application they might have. They have certainly had enormous impacts on some aspects of philosophical and religious thought.

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The social critique: Biomedicine, radical materialism and technocratic power Many people acknowledge that all good research has cultural value but still argue that biomedical research, even in a university setting, is by its very nature applied and should therefore be judged mainly on its practical results. However, this does not mean that instrumental market values exhaust the spectrum of ethical concern. What type of practical results do we value and why? Can we really justify spending billions of dollars to determine the sequence of the human genome when disadvantaged children are dying and becoming blind from preventable diseases? Do we really want to develop methods to screen human foetuses for hundreds of potential genetic defects, or to genetically engineer transgenic animals destined to suffer painful and distressing diseases so that we can study them? Are we really so convinced by radical materialism and spiritual nihilism that we approve of experiments on human embryos, the use of human fetal organs in transplantation programmes, or the use of brain-dead people as organ donors, experimental subjects or surrogate mothers?'"* The failure to articulate clear answers to such questions leaves the profession vulnerable to critics who see it as self-serving and with hidden value assumptions that would be hard to justify in open debate.^•''•^ One of the milder social critics of biomedical research merely remarked that 'the latest high technology treatments may contribute more to the fame of their creators than to the happiness of their patients'.^ But a strong lobby of egalitarian, Foucaltian and feminist critics see the problems as more deep-seated and more serious.'*'^ According to this view, biomedicine has grown by capitalizing on a limited number of past successes, and by promising a bioutopia that is unlikely to be deliverable. In that way it has been able to ensure research and development funds from the public purse and to expand the power of a male-dominated technocratic hegemony that remains 'largely unskilled in recognizing the full social and political consequences of their professional work'.^ The danger, according to this analysis, is that biomedicine will increas-

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ingly become an agent of social control. 'The technocrat needs a great deal of license to experiment and develop costly techology, and embodied in this license to act is the opportunity to accumulate social power, specifically, in deciding which conditions and disabilities will be stigmatized, which will be remedied, and which populations will become the experimental subjects used in the future development of the field'.^ Superficially, this critique seems exaggerated and unfair. After all, every professional group tries to increase its power and influence in society. However, the criticism that biomedicine is increasingly used as an agent of social control has a ring of truth that is hard to dismiss out of hand. The use of molecular cytogenetics to develop prenatal diagnostic tests, for instance, may be experienced by both clinicians and patients as a pressure to terminate affected pregnancies. Why else would testing be provided?'*^ There is a tendency to insist that the acceptance of vaccines known to have rare but severe side-effects should be made compulsory on rationalist grounds rather than relying on free choice, education and research to provide safer vaccines. The insistence on a definition of death that is counter-intuitive, and under which some brain function is still demonstrable, may be experienced as a pressure to minimize costs and persuade relatives to allow the use of organs in optimal condition for transplantation.^-' All these examples represent a tendency for biomedicine to be an agent of the imposition of instrumental and radical materialist values against widely held and deeply felt moral or religious counterintuitions that are in fact equally rational and philosophically justifiable. ^ ^' "* There have been positive responses by the biomedical research community to some of the social critiques. Community participation in committees overseeing the ethics of experimentation on humans and animals has been extended, and has become a legal reciuirement in most countries. The voluntary self-imposed moratorium on recombinant DNA experiments was followed in most countries by self-regulation of experimental work, which was then augmented by community participation and legislation. However, these changes are regarded by most working scientists as

nuisances to be endured to keep the research funds flowing; there has been no fundamental change in the culture. The usual attitude is that public concern is due to an ignorance of science that can be addressed by public relations and education campaigns.

Is the professional response to public pressures compounding the problems? The acquiescence of the biomedical research community in direct control by Government and commercial managers (who hold a competitive market model of society and a concept of knowledge as a consumable commodity) allies science with a culture that is already vulnerable to ethical and social criticism on a number of grounds. The alliance may help to maintain research funding so long as economic rationalism remains politically dominant. However, such an alliance increa.ses the legitimacy ot the criticism that biomedicine is used as an agent of social control, and could result in much more serious long-term threats to science once the political tide turns. As an example, cost-benefit analysis has been used in Britain to support the establishment of regional DNA screening laboratories, including arguments that 'the provision of genetic registers would ensure that families at high risk were identified', 'funds released from treatment of genetic disorders could be used for other purposes', and arguments that regional laboratories are 'a prerequisite to a primary prevention service that would identify carriers of recessive genes'.^^ Together with a number of dubious value assumptions that are implicit in this analysis, it assumes that without cost, the combined exercise of power and technical knowledge can induce families at risk to submit to testing and discontinue affected pregnancies. The importance of this implied social control can be seen by calculating the outcome if 10% of families decided to decline testing and to continue with affected pregnancies. This would convert the small cost savings from the operation of a DNA testing laboratory into an excess annual cost of about S80 000 p.a. at 1992 prices. If purely instrumental economic values were applied to

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the audit of such services, there would be pressures to increase the termination rate to improve cost effectiveness and to decrease provision for the care of the handicapped on the grounds that it would be unnecessary if the genetic services operated more etriciently . I am not arguing here that molecular genetic research and genetic intervention are unethical perse. There are moral arguments for and against such intervention, but they are based on compassion and respect for people rather than on relative cost. Whatever arguments there may be, the principle of patient autonomy suggests that those directly affected by such difficult choices should be informed and counselled in a neutral environment, allowed to make a free choice, and given moral support and practical help whichever way they choose. The alliance of molecular genetics with managerial rationalism could bring biomedicine into disrepute by conspiring to ignore those principles and implement 'eugenics by default, through the impersonal, amoral operation of a penny-pinching bureaucracy'. Similarly, the attitude that social and ethical criticism of biomedicine is due to ignorance of the science, which could be remedied by 'top-down' education,^ is likely to be counterproductive: community education of that type rarely works. Rather, it is a reciprocal process in which outside 'experts' need to listen to and learn from grass-roots communities and work with them to develop solutions to their problems. Effective community education requires the development of a relationship of trust between community and expert, two-way communication, and a balance in the inputs and power of each partner.

Possible ways forward The extent to which a bipartisan philosophy of economic managerialism has allowed the New Zealand Government to take direct control of research and emasculate academic freedom is a sobering lesson. Fortunately, it has not gone so far in Australia as there has been more effective academic and political opposition. Nevertheless, it is vital to the economic as well as the cultural future of the country that the control of university teaching, schol-

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arship and research remains with the universities and is not allowed to pass to the Government, private corporations, or bureaucracies under the control of the Government. In this battle, the arts and humanities are as important as the sciences, ^^ and every attempt to impose external control on part of a university should be opposed by the whole academic community. Similarly, it is vital to maintain a core of basic, curiosity-motivated research of high international standing in research institutes and research organizations outside universities. The Government has great power and controls the public purse. The New Zealand experience shows these can be overwhelming if there is no effective political opposition. Nevertheless, the history of the attempt by the Australian Federal Government to take control of the John Curtin School of Medical Research from the Council of the Australian National University shows that the use of Government power is limited by legislation designed to protect the autonomy of universities and freedom of information, and by the power of the Senate. These inbuilt political checks and balances are, however, only as effective as the political will to use them. For reasons explained in the previous section, it is unlikely that a paternalistic education campaign will defuse the criticism that biomedicine is an agent of social control. Since this claim is a symptom of a fundamental clash of perceptions, values and preferred patterns of social organization between hierarchical and egalitarian cultures, such criticism may be impossible to completely overcome. Nevetheless, the refusal to capitulate to instrumental values and managerial control in return for continued funding would go some way towards providing the atmosphere of trust that is a prerequisite for effective community education. For this process to go further requires not only that biomedical scientists go out into the community to communicate their knowledge and enthusiasm about science, but that they also listen to, take seriously and respond sensitively to the value and social concerns raised by the public. Some of those concerns may initially appear to be uninformed and irrational, but to treat them all as obstacles to be

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overcome by rational argument would be to miss the point. Scientists need to become open to public perceptions and values in a way they have often been taught in the past to consciously avoid. This suggests that as part of a long-term solution to the problem, scientific education should replace some of its technical content with an introduction to social, moral and environmental philosophy.

8. Singer, M. 1988. Biology frontiers pose ethics questions. Nation. Res. Council News Report. 38:19-21. 9. Sullivan, L. 1989. Social legislation for the reproductive technologies. Aust. J. Social Issues 24: 33-43. 10. The Parliament of The Commonwealth of Australia 1992. The John Curtin School of Medical Research. Report by the Senate Standing Committee on Employment, Education and Training. AGPS, Canberra. References 11. Ninham, B. 1992. Why do basic research? 1. Toulmin, S. E 1989. Cosmopolis: The Hidden Nation. Grad. 3: 3-5. Agenda of Modernity. Free Press, New York. 12. Mathews, F. 1990. Destroying the gift: Ratio2. Stevenson, L. 1989. Is scientific research value nalising research in the humanities. Aust. Uni. neutral? Inquiry 32: 213-222. Rev. 33: 19-22. 3. Wildsavky, A. 1991. Public policy. In The 13. McCullagh, P. J. 1992. Brain-dead, Brain-absent Genetic Revolution: Scientific Prospects and Public and Brain Donors: Human Subjects or Human Perceptions. B. Davis (ed.). John Hopkins UniObjects? ]ohn Wiley, Chichester. versity Press, Baltimore, pp. 77-104. 14. Clarke, A. 1990. Genetics, ethics and audit. 4. Foucalt, M. 1973. The Birth of the CUnic: An Lfl«m335: 1145-1147. Archaeology of Medical Perception. Vintage, New 15. Toulmin, S. E. 1958. The Uses of Arf!ument. York. Cambridge University Press, Cambridge. 5. Finkelstein, J. L. 1990. Biomedicine and tech16. Harman, G. 1977. The Nature of morality: An nocratic power. Hastings Center Report, Introduction to Ethics. Oxford University Press, 20(4): 13-16. New York. 6. Roberts, L. 1989. Ethical questions haunt new genetic technologies. Science 243: 1134-1136. 17. ChapplcJ. C , Dale, R. and Evam,B.G. 1987. 7. Salleh, A. 1989. Stirrings of a new renaissance. The new genetics: Will it pay its way? Lancet i: ldg 38:26-31. 1189-1192.

Value issues in biomedical science: public concerns and professional complacency.

Biomedical research was once an unquestioned good, and generous funding for a short time allowed researchers to work on whatever interested them. Two ...
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