Using Technology to Deepen Democracy, Using Democracy to Ensure Technology Benefits Us All

Friday, April 01, 2005

Experimental Subjects in the Next Revolution: Conjoining Progress, Precaution, and Peer-to-Peer

According to a piece in Medical News Today, John Harris, a Professor of Bioethics at the Institute of Medicine, Law and Bioethics at the University of Manchester, has argued (in “Scientific Research is a Moral Duty,” Journal of Medical Ethics, 2005 31: pp. 242-248) that the public actually has at the very least a moral obligation to participate in medical and scientific research.

In general, I consider Harris to be among the most usefully provocative and clarifying bioethicists in the field, but I am a bit perplexed by the argument ascribed to him here.

And so, in this brief essaylet I want first to explain what I find troubling in the argument here, then to examine what seems to me its connection to certain analogous arguments one sometimes hears technophiles make in respect to the so-called Precautionary Principle, and then finally to propose an alternate peer-to-peer frame which seems to eliminate altogether any reason to make such arguments in the first place.

Harris’ argument, as it is reconstructed in the Medical News piece at any rate, is that since “[e]veryone in society stands to benefit from research, and indeed has already benefited... it should be economically, politically, and personally supported.”

Medical research has “almost universally been treated with suspicion and even hostility” among those who regulate it. But “[w]hile history has proved that suspicion of doctors and biomedical research is well founded,” the article continues to paraphrase, “this does not mean that research is guilty until proven innocent.” Harris is then quoted as saying: "Vigilance against wrongdoing is one thing; the inability to identify wrongdoing, with the result that the good is frustrated and harm caused is quite another."

Of course this is true, but it would appear that innocence is attaching in Harris' formulation disproportionately on precisely the institutions and practices being regulated to prevent abuses on the basis of suspicions that everyone presumably admits are “well-founded.”

It makes little sense in my view to ascribe hostility and irrational suspicion to regulators whose job it is, and for good reason, to be skeptical and suspicious. The attitude expressed here seems to me curiously complementary to the hostility of many technophiles to the Precautionary Principle which advocates the conspicuously sensible ideas that:
[1] We should always be cautious in the face of possible harm;
[2] As assessments of risk and harm grow more severe according to the consensus of relevant science, the burden of their justification rightly falls ever more conspicuously onto those who propose either to impose them or to refrain from ameliorating them; and
[3] The processes through which these justifications and their assessments properly take place must be open, evidence-based, and involve all the actual stakeholders to the question at issue.

Technophiles who value speedier technological development in the expectation that it will deliver sooner goods of incomparable value, sometimes like to imply that advocates of Precaution are indifferent to the risks that often inhere in refraining to act, or assess actual risks unnecessarily stringently, or exhibit a kind of blanket hostility to the attainments of medical-industrial technocultures on which they themselves depend hypocritically for their own standards of living.

While this is no doubt true of some advocates of Precaution –- and partisans on both sides can of course always find photogenic specimens to trot out in the support of their views -– it ignores the extent to which the Precautionary Principle was introduced precisely in response to damaging corporate-friendly government or self-sponsored research that selectively framed and published its results, and in response to the deployment of impossibly high standards of certainty to create the false impression that widely held, well-founded suspicions and concerns were in fact too controversial to provide a justification for regulation.

Critics of Precaution also tend to ignore that many of the most influential formulations of the Precautionary Principle (which has no definitive or canonical expression) confine their attention to cases of likely nonreversible harm to the health of individuals or to environmental harms that are likely to impose remediation costs higher than the benefits they generate.

Few formulations of the Principle are in fact oblivious to the ineradicable dimension of risk that inheres in all human conduct, including decisions to refrain from action. And while I will grant that it has not yet often been mobilized in arguments of this kind, the Precautionary Principle would seem to me to impel the development and deployment of emerging technologies and techniques to more effectively address global harms, malnutrition and ill-health, certain existential risks that have not hitherto been susceptible of effective response (for example, a defense against asteroid impacts, or a global warning system to inform vulnerable populations of tsunamis and the like).

I have argued that the Precautionary Principle is (or certainly can and should be) infinitely far from the irrationalist celebration of stagnation and hostility to civilization technophiles sometimes seem to want to paint it as. It is, on the contrary, a democratizing deliberative framework for development, at once impelling a fairer distribution of the costs, risks, and benefits of technological development onto all of its stakeholders, while likewise enlisting the wider collaboration of these stakeholders in the actual process of research and the assessment of its results.

Precaution is not then a repudiation of progress, but the insistence of social democrats that progress, as we all now know, requires both the development of more powerful technologies and the wider empowerment of people through recourse to these technologies. Without both it is never appropriate to speak of a developmental outcome as progressive in the first place.

The force of Harris’ argument depends on his assumption that “[e]veryone in society stands to benefit from research, and indeed has already benefited.” But this is surely contradicted by his own recognition that worries about abuses are “well-founded.” Clearly, for one thing, the victims of such abuses are not straightforward beneficiaries of research in the ways that non-victims are.

This seems rather analogous to the argument of some opponents of Precaution who in celebrating the long-term benefits of development they themselves enjoy often elide the reality of the victims of development over the developmental spans in which they actually lived.

It is quite difficult to imagine that Harris would rephrase his point to suggest that people have a moral obligation to participate in risky research just to ensure that corporations profit more and more swiftly than they otherwise would, whether or not the people taking on these risks benefit themselves. But I want to know precisely why the obligation he proposes would not amount to this more pernicious demand in actual practice.

Now, while he does propose that people have an “obligation” to participate in research for the common good, even when this imposes risks and harms to their own well-being that might not otherwise seem compelling, Harris is thankfully not actually advocating that this moral obligation likewise justifies any kind of legal compulsion to so participate.

But he frankly nudges uncomfortably close to doing precisely that.

According to the Medical News article, Harris “contends that compulsion is, in principle, justifiable, and in certain circumstances, may be justified. And he suggests that a change to the Declaration of Helsinki, which sets out the ethical grounds for research, is warranted.”

In making his case, the article continues on, “Professor Harris points out that other activities in society, such as vaccination the wearing of seatbelts, and jury service, require the loss of personal autonomy for the public good.”

It is not exactly a matter of indifference that in each of the examples offered up here, an arguably rather negligible loss of autonomy corresponds not only to public goods but discernible benefits to the individual herself. Compelling individuals to participate in risky medical research might quite evidently impose incomparable costs without anything like comparable benefits.

Harris concludes his case in a moral register that is much less problematic: "The argument concerning the obligation to participate in research should be compelling for anyone who believes there is a moral obligation to help others, and/or a moral obligation to be just and do one's share. Little can be said to those whose morality is so impoverished that they do not accept either of these two obligations."

This seems to me an uncontroversial claim, but I sense in it a kind of frustration and even resignation that helps account for why Harris might hesitate to confine his argument to the mobilization of nonbinding moral injunctions.

I think Harris would be altogether wrong to succumb even slightly to the lure of compulsion as a way to secure the benefits of medical research (about which I happen to agree with him entirely). And I think it would be wrong for him mischaracterize as hostile or irrational the reasonable expectations of harm and abuse that both inspire the regulation of research and the hesitancy of many individuals to participate in some forms of it, as a way of justifying such compulsion.

But, frankly, I also think he is wrong to despair that beneficial research might not be undertaken in the absence of moral injunction or legal compulsion in the first place.

By way of a conclusion, permit me to sketch an altogether different (and, if I can be forgiven this, rather utopian) sense of the disposition of things.

Although it is difficult to descry such a thing in the midst of American militarism and fundamentalisms (of both the market and theological varieties), I am inclined to believe that the networked civilizations of the developed and developing world are well on their way to finding themselves in a quite self-conscious global project to empower morphological freedom and ameliorate (and to the extent possible even eliminate) nondiscretionary suffering and death. The science seems too proximate and the benefits too palpable for many to resist for long.

However well we fund and regulate medical and other scientific research to these ends, however, it remains true that the effects of therapeutic and enhancement procedures on particular individuals, in unpredictable combinations, and over the various longer time-scales involved are simply impossible to anticipate as well as anyone would like.

This has the consequence that every citizen in the democratizing world should be regarded as not only a legal subject but an "Experimental Subject" as well.

Experimental Subjects are bearers not only of the usual bundle of rights legal citizen-subjects have properly come to expect in social democracies (and which certainly should include at least basic healthcare provision), but should likewise be bearers of a “Stakeholder Grant” providing them the means to participate -- in as competent, informed, accountable, and consensual a way as possible –- in experimental therapeutic and enhancement medical procedures as well.

Unlike Harris, who seems to want to impel or even compel individuals to participate in medical research for the public good, I would argue that we should recognize the extent to which everybody is already participating in such research, as consumers in a vast globally distributed long-term experiment in combination therapy.

It seems to me that as Experimental Subjects in the global medical-industrial complex we all of us already incarnate indispensable data points in what amounts to a vast peer-to-peer project to advance medical and scientific research.

What I propose is simply that we should all actually recognize our indispensability, recognize the literally revolutionary force of this insight, and then demand to be paid for the privilege of so participating.

I would also propose that since we are all expected to relinquish quite a bit of traditional control over the circulation of personal information about the effects of our ongoing participation in this global experimental culture, we should not only demand payment but likewise demand that these results be distributed absolutely freely and transparently to encourage thereby the kind of innovation and accountability that best ensures that the costs and harms we undertake will be minimized and the benefits we enable available to all (including ourselves).

Since Harris suggests himself that “[f]inancial incentives to participate in research are fully justified and preferable to compulsion,” I hope he would be sympathetic to this viewpoint. My only cautionary note in joining with Harris in such a recommendation is to insist that the mode of financial incentivization that seems to me most likely to bear fruit would be one conjoined to a democratizing peer-to-peer model of research, rather than any of the customary market apologist models which we all well know by now would too likely devolve soon enough into the usual demand of “your money or your life.”

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