Payment of Research Subjects: A Broader Perspective

We need to be careful about defining the limits of this discussion too narrowly. Payment of research subjects in and of itself is not necessarily harmful; however, its effects and its place in our current social structure must be considered carefully. With the wide variety of payment models in use and under discussion, this issue is clearly not as simple as deciding whether to oppose or defend the practice of payment (Dickert and Grady 1999). Given the present climate, Christine Grady's (2001) approach is quite comprehensive and reasonable, but the practicality of her analysis may serve to divert attention from the bigger picture.

It can be useful to articulate the ideal in order to clarify what we may be agreeing to sacrifice to the realistic. In order to highlight inherent contradictions between ethical practice and social reality, a more ideal, if impracticable, model is described here.

Murray (1987) discusses the greater meaning to society of "gifts of the body to strangers" as serving to tie people together as a community and signaling that self-interest is not the only human motivation. This framework is generally applied to blood donation, organ donation, and more recently to human tissue research, but it can also be applied to the sharing of oneself as a research subject for the advancement of medical knowledge. Titmuss (1971) examines the extent to which public policies encourage or discourage altruism and regard for the needs of others, and whether the marketplace is an appropriate arena for the exchange of blood (an analysis that could, by extension, apply to other body parts and functions, as well as to clinical research). He argues that the commercialization of blood erodes the sense of community, increases the danger of unethical behavior, and results in increasing amounts of the blood supply being provided by low-income and exploited populations. In his view, social policy should prohibit the sale of blood in order to increase the freedom of all to be part of the "gift relationship." For this gift relationship to be primary, financial considerations must be minimized or nonexistent. Applied to clinical research subjects, this model would limit payment, if any, to reimbursement of expenses (and possibly of time or inconvenience). Though this model minimizes ethical difficulties, it may not yield sufficient numbers of research subjects and would be hotly contested.

If one compares the relative success of the gift relationship model for whole blood donation with the ethical debates and legal debacles arising from the areas of tissue research and genetic patents, it becomes quite apparent that money muddies the waters. Having said that, we are perhaps too far along in the market game to hope that a similar model for research subjects could take root any time soon, given the immense power of the pharmaceutical industry. As Ackerman (1989) points out, it would be wrong to ask research subjects to risk themselves for the financial benefit of pharmaceutical companies. We have a situation that could perhaps most ethically be remedied by a system of public drug development and distribution. [For more on this subject, see Marcia Angell's recent editorial in TheNew England Journal of Medicine (2000). Although somewhat inexplicably concluding that the private sector is best suited for pharmaceutical development, she nevertheless cogently analyzes its numerous problems.]

The presentation of this model should not be construed as an argument against payment to research subjects on principle (I have both used monetary incentives in research and approved them as an Institutional Review Board member). Rather, it is an appeal to consider the broader implications of public policy in this area. There are not only ethical concerns, but also significant political issues and prevailing power relationships to analyze.

Grady's closing paragraph leaves the impression that payment is a good way to acknowledge those who generously volunteer as research subjects. To the contrary, payment is entirely inadequate as a reward, given all the reasons (including those cited by Grady herself) for which it must be kept to a minimal level. Grady also neglects the most difficult practical question for most of us: defining the limit between "arbitrary...