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Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in it
Science is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i
“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and participate in scientific research, particularly biomedical research, and the powerful moral imperative that underpins these obligations. Now it is more imperative than ever to articulate and explain these obligations and to do so is the subject and the object of this paper.
Let me present the question in its starkest form: is there a moral obligation to undertake, support and even to participate in serious scientific research? If there is, does that obligation require not only that beneficial research be undertaken but also that “we”, as individuals and “we” as societies be willing to support and even participate in research where necessary?
Thus far the overwhelming answer given to this question has been “no”, and research has almost universally been treated with suspicion and even hostility by the vast majority of all those concerned with the ethics and regulation of research. The so called “precautionary approach”9 sums up this attitude, requiring dangers to be considered more likely and more serious than benefits, and assuming that no sane person would or should participate in research unless they had a pressing personal reason for so doing, or unless they were motivated by a totally impersonal altruism. International agreements and protocols—for example, the Declaration of Helsinki10 and the CIOMS Guidelines11—have been directed principally at …
Footnotes
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↵i In this paper I use arguments developed for a paper I wrote with my colleague Søren Holm. See our paper, Should we presume moral turpitude in our children?1; my chapter, Research on human subjects, exploitation and global principles of ethics,2 and my paper, Ethical genetic research.3 Recently these themes have been taken up by Martyn Evans. See his paper, Should patients be allowed to veto their participation in clinical research.4
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↵ii Here the argument is restricted to research projects that are not merely aimed at producing knowledge. Unless an increase in knowledge is a good in itself (a question I will not discuss here) some realistic hope of concrete benefits to persons in the future is necessary for the validity of our arguments.
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↵iii It is perhaps also worth pointing out that there is a separate question about whether this moral obligation should be enforced on those who do not discharge it voluntarily. This is not a question I will discuss here.
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↵iv I owe this formulation of the interest I have in being a moral agent to Søren Holm.
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↵v I use this term in a non-technical sense.
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↵vi Those over 65 may be excused if they wish.
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↵vii Of course the historical explanation of the Declaration of Helsinki and its concerns lies in the Nuremberg trials and the legacy of Nazi atrocities. We are, however, I believe, in real danger of allowing fear of repeating one set of atrocities to lead us into committing other new atrocities.
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↵viii Figures are for 2003, with an estimated five million people newly acquiring HIV in that same year.28
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↵ix The CIOMS gloss on their own guidelines creates a kind of Catch 22 which is surely unreasonable and unwarranted. Wherever the best proven diagnostic and therapeutic methods are guaranteed by a study in a context or for a population who would not normally expect to receive them, this guideline would be broken. The CIOMS guideline four therefore surely contradicts and violates not only the Declaration of Helsinki but also its own later guideline 14.
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↵x This obligation has been partly endorsed by the Hugo Ethics Committee in its Statement on Human Genetic databases.37 However, like so many statements by august ethics committees the Hugo statement contains not a single argument to sustain its proposals or conclusions. This paper and those referred to in references 1, 2, 3, and 4 above provide the missing arguments. For a critique of the operation of national and international ethics committees see the introduction to my book, Bioethics.38
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