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Target Article

How Payment for Research Participation Can Be Coercive

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Pages 21-31 | Published online: 16 Aug 2019
 

Abstract

The idea that payment for research participation can be coercive appears widespread among research ethics committee members, researchers, and regulatory bodies. Yet analysis of the concept of coercion by philosophers and bioethicists has mostly concluded that payment does not coerce, because coercion necessarily involves threats, not offers. In this article we aim to resolve this disagreement by distinguishing between two distinct but overlapping concepts of coercion. Consent-undermining coercion marks out certain actions as impermissible and certain agreements as unenforceable. By contrast, coercion as subjection indicates a way in which someone’s interests can be partially set back in virtue of being subject to another’s foreign will. While offers of payment do not normally constitute consent-undermining coercion, they do sometimes constitute coercion as subjection. We offer an analysis of coercion as subjection and propose three possible practical responses to worries about the coerciveness of payment.

This article is referred to by:
Response to Open Peer Commentaries on “How Payment for Research Participation Can Be Coercive”
Filthy Lucre or Fitting Offer? Understanding Worries About Payments to Research Participants
The Continued Complexities of Paying Research Participants
Licensing Domination: Foreign Will and Social Benefit
Freedom From Subjection to the Will of Others: Study Payments, Labor, and Moral Equality
Research Payment and Its Social Justice Concerns
Clinical Ultimatums: Coercion as Subjection
Coercive Offers Without Coercion as Subjection
Coercion as Subjection and the Institutional Review Board
The Coercer’s Role in Coercion
Consent, Threats, and Offers
The Exploitation of Professional “Guinea Pigs” in the Gig Economy: The Difficult Road From Consent to Justice
Institutional Review Boards (IRBs) Render “Coercion as Subjection” Implausible
A Proposal for Fair Compensation for Research Participants

Disclaimer

The views expressed are the authors’ own. They do not represent the position or policy of the National Institutes of Health, the U.S. Public Health Service, or the Department of Health and Human Services. ▪

Notes

1. For an overview of ethical concerns about the use of inducements to motivate research participants and responses to these concerns, see Wilkinson and Moore (Citation1997).

2. More specifically: “A coerces B to do X in a way that invalidates B’s consent only if (1) A proposes or threatens to violate B’s rights or not fulfill an obligation to B if B chooses not to do X and (2) B has no reasonable alternative but to accept A’s proposal” (Wertheimer and Miller Citation2008, 390).

3. Note that Wertheimer and Miller think that the relevant baseline for a threat is the coercee’s rights, whereas the Belmont Report describes the threat in terms of harm. These are different ways to capture the notion of making someone worse off.

4. We can imagine cases in which someone would be worse off if she enrolled in a study and was paid than if she enrolled in the same study and was not paid. Such unusual cases are not the locus of disagreement between those who think payment can be coercive and those who do not.

5. Relative to some standard of fairness, such as the outcome of an idealized market (Wertheimer Citation1996).

6. The discussion in this section closely follows that given in Garnett (Citation2018).

7. Where the research is being carried out by or on behalf of a government, however, it may indeed be the case that the researchers have specific positive duties towards members of the research population. On this, see Mackay (Citation2015).

8. This analysis leaves out a number of complexities, including those arising from the possibility of bluffs. For a more complete version, see Garnett (Citation2018).

9. For helpful analysis of this idea in the context of exploitative offers, see Mikhail Valdman’s analysis of “unacceptable non-transaction costs” (Valdman Citation2009, 9–10).

10. This means that whether or not someone is coerced in this sense depends on the subjective mental states of both parties—if in fact they act for the same reasons, then there is no coercion. Likewise, whether the person being coerced feels as though she is coerced will partly depend on why she thinks the coercer is acting.

11. The degree of interpersonal subjection may depend also on (a) the badness of the unacceptable alternative and (b) the specificity of x.

12. That coercion as subjection does not suffice by itself for a failure of consent is shown by the case of the appendectomy, discussed in the preceding: One is able to give valid consent to such a procedure, despite the fact that in doing so one may be subject to the foreign will of the surgeon. See also the case of natural history, discussed in the following.

13. More specifically, our view is that ordinary (nonphilosophical) talk about coercion is generally ambiguous with respect to the two underlying moral concepts distinguished here, i.e., consent-undermining coercion and coercion as subjection. While previous philosophical work on the topic has succeeded in isolating the first of these and making it precise, this article aims to do the same with the second. In both cases, some revision of ordinary usage is unavoidably required. Thus, our claim is not that people have all along been employing one concept (coercion as subjection) in a fully coherent way while philosophers have been mistakenly analyzing a different one (consent-undermining coercion). It is that people have been semi-incoherently employing a mixture of both concepts, and that the best way of making philosophical sense of this is by providing a clear account of the two and the relationship between them.

14. Of course, there may be individual exceptions, such as someone with pressing debts to pay off or someone who would have to drop out of college without the money.

15. Of course, this conformity of wills is unlikely to be perfect. The researchers may have various ancillary motives, such as publication or career advancement, that are not shared by the participants. Nevertheless, to the extent to which these are comparatively minor motivations relative to the aim of benefitting future sufferers, the degree of interpersonal subjection will be low. By contrast, if the researchers cared very little about future patients and were, in effect, using participants and their vulnerabilities primarily as tools for their own career advancement, the degree of interpersonal subjection would be high and the case would likely involve coercion as subjection.

16. Note that we have not said anything here about how to assess the magnitude of the harm involved, but rely on the intuitive judgment—which we would expect to be shared by REC members and participants—that the benefits are easily enough to outweigh the harms. In more contested cases, it might be that the views of potential participants should be elicited in order to ascertain how they value the potential harm of subjection.

17. For a more challenging case, see Jerry Menikoff and Edward P. Richards’s description of how U.S. pediatric oncologists have collectively decided to refuse to offer patients new treatments that are comprised of novel combinations of already approved drugs except through clinical trials (Menikoff and Richards Citation2006, 239–251). If their description is accurate, it is plausible that parents are coerced into enrolling their children into clinical trials. Defenders of the trials would have to argue that the harm of this coercion is outweighed by the social value of the knowledge gained through the research.

18. Note that although neither necessary nor sufficient for an absence of coercion as subjection, the fact that a study has been conducted without any offer of payment, or of only certain forms of “token” payment, is in general a reliable indicator that participants have not been coerced to enroll. Payment that simply covers participants’ costs (such as parking charges) offers no net economic benefit to participants, and therefore cannot constitute any means, let alone a sole means, of avoiding unacceptable economic alternatives. Those who enroll in such studies, then, do so for reasons other than their having no acceptable alternative. Similar considerations apply to payment by means of gift cards that are redeemable for nonessential items, such as movie tickets. (By contrast, voucher payments in terms of, say, food stamps most likely would raise legitimate concerns about coercion.) Our analysis might therefore explain why many of the Largent et al. respondents thought that a “substantial payment” was more of a source of concern than a “token payment.”

19. This then provides a reason in favor of research that is “responsive to the health needs or priorities of the communities or populations where the research will be conducted” (CIOMS Citation2016, Guideline 2).

20. For example, the Institutional Review Board Guidebook states: “Direct payments or other forms of remuneration offered to potential subjects as an incentive or reward for participation should not be considered a ‘benefit’ to be gained from research” (OHRP Citation1993, chap. 3).

21. Bentley and Thacker (Citation2004) found that higher payments increased participants’ willingness to enroll in a hypothetical study but did not appear to blind them to risk. Halpern et al. (Citation2004) found no effect of level of payment on patient perceptions of the risks of a hypothetical study. In their comparison of the effects of short and long consent forms, Stunkel et al. report that “volunteers who reported a primary financial motivation had significantly greater comprehension compared to volunteers with a primary nonfinancial motivation” (Stunkel et al. Citation2010, 6).

22. This corresponds to what Largent et al. call the “sliding scale view” (Largent et al. Citation2013, 506).

23. For alternative analyses, see, e.g., Valdman (Citation2009) or Vrousalis (Citation2013). Note that the overlap between coercion as subjection and exploitation may be even greater on such views than on the standard one.

24. See, e.g., Frankfurt (Citation1973), Feinberg (Citation1983), and Haksar (Citation1976) (all quoted in Wertheimer Citation1987, 226–227).

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