Equitable payments for research participation: A successful case of exceptionalism

Abstract

Bélisle-Pipon et al. recently reported on challenges they encountered in adopting an equity-based rather than equality-based framework for research participation payments. We encountered a similar need in a project that developed tools and resources to support trustworthy data practices in the field of participatory science. While typical approaches employ a fairness-as-equality model, where all participants receive equal pay for equal work, we drew on social justice principles to develop a fairness-as-equity framework for our collaboration with environmental justice practitioners. We allocated different levels of payments to environmental justice practitioners engaged in community-led projects and conventional practitioners engaged in institution-led projects. We share this case as a successful example of what Bélisle-Pipon et al. called “a plea for exceptionalism” in paying research participants in ethically appropriate ways.

Traditional research institutions increasingly recognize the importance of conducting “engaged” research with citizens and patients because of the benefits this approach offers, such as empowering communities; improving study questions and enrollment; and increasing the uptake of results (McClimans, 2024). But research institutions have not yet adapted adequately to the differing ethical obligations and priorities of participatory forms of research, which may challenge the appropriateness of traditional notions of “human subject of research” or what counts as fair payment.

In the traditional system, discussions about payments to human subject research participants typically focus on whether to offer incentives, and if so, how much and through what means (e.g., cash, gift card, etc.). The amount of incentives, in particular, has historically often been the focus: too high a payment could be coercive and distort the judgment of potential participants, but too low a payment might be exploitative (Resnik, 2015). One point of broad agreement seems to be the adoption of an equality framework, or “equal pay for equal work,” in which payments are uniform for similar participation in a given study (Resnik, 2015). Although this is common practice, it is not a regulatory standard, and there are other defensible interpretations of fairness for research participation payments (Brooks and Smith, 2022; Persad et al., 2019). Equality approaches treat participants as roughly equally positioned vis-à-vis participation, and thus cannot acknowledge historic or current injustices that may pose disparate barriers or disincentives to research participation. In contrast, employing the framework of fairness as equity may be particularly suited for a more ethical, responsive practice in engaged research undertaken against a background of historical disparities.

Bélisle-Pipon et al. (2022) shared an example of their attempt to adopt equitable (rather than equal) payments in a research project. Their study included citizens and patients on an Advisory Board who provided counsel throughout the project. In proposing the study to their Institutional Review Board (IRB), the researchers declared that they intended to offer modest and standard payments to the citizens/patients on the Advisory Board, but not to board members who were experts in other aspects of the research. Their IRB denied the request for different payment amounts, stipulating that the standard approach to human subject research payment was fairness as equality, resulting in equal payments to all participants. The project leaders responded to the IRB that they “had adopted a posture of equity and not equality to encourage the involvement of people who, due to various personal and financial barriers, might not otherwise participate in research” (p. 128). The IRB again denied the request, insisting that “fairness” could only be interpreted as equality. We endorse Bélisle-Pipon et al.’s equity approach, and want to share a case of participatory science in which we successfully implemented it with IRB permission.

Our project, funded by the National Science Foundation and in collaboration with the Association for Advancing the Participatory Sciences (AAPS), drew on the experiences and insights of approximately 75 people to co-develop a Data Ethics Toolkit to support and maintain ethical research norms in participatory science (Cooper et al., 2023). At the time of its founding in 2013, the AAPS (formerly the Citizen Science Association) was a professional organization of practitioners at institutions (universities, government agencies, NGOs, etc.) vested mostly in contributory-style research, in which non-scientists provide scientific data to a centrally organized institutional project. Contributory-style projects engage participants who tend to be white, affluent, and with college degrees (Allf et al., 2022), and most founding members of AAPS were of the same demographic. The practitioners who run contributory-style projects are typically employed full-time by institutions and can view their own involvement in participatory science research as part of their jobs—for example, as part of a tenured faculty member’s service obligation.

In contrast, community science practitioners are often from disadvantaged communities confronting environmental or other injustices, and engage in participatory science for social and political action (Cooper et al., 2023). As a consequence of their experience, these practitioners often have valuable perspectives that are essential to accurate planning and conduct of the research. This might include highly sensitive situations, legal implications of the research, or a history of intimidation, racism, or other power dynamics.

Although their perspective is critical for the research, when this work is unrelated to their employment and occurs outside of their normal work hours, practitioners do not necessarily receive pay, rewards, or recognition for their engagement and activism. Not only does their participation come at a cost to them when their time could have been spent in other ways, but it also often involves their volunteer labor to rectify a problem they did not create and may or may not directly benefit from fixing. In the context of this project, the Data Ethics Toolkit aimed to guide project leaders’ ethical decisionmaking. Many of the biggest ethical conundrums arise in contributory projects because they can (unintentionally) exploit disadvantaged groups. Consequently, community-based practitioners who have lived experience with this phenomenon can inform more ethical practice in these contexts.

Because community-based practitioners were not adequately represented in the participatory science organization (AAPS, formerly CSA), in 2018–2019, an NSF-funded effort (headed by Cooper) brought leaders of community science projects into the membership and leadership of AAPS who subsequently formed the Environmental Justice Practitioners (EJP) Working Group. The context and perspectives that community science practitioners brought with them allowed them to highlight the need to (a) include these views in the co-development process for the Data Ethics Toolkit and (b) discuss appropriate compensation for their research participation. Participation from this community was essential to creating a toolkit that reflected the practices necessary for engaging communities ethically in future research. Thus, to avoid causing additional ethical harms by reinforcing incomplete and inadequate ethical practices in the Toolkit, we needed to ensure that their perspectives were represented. To accomplish this, we revised the project in three ways, with the first two setting the stage for the third, the equity payment framework.

First, we partnered with the co-chairs of the Environmental Justice Practitioners (EJP) Working Group (Martin and Wilson) who were trusted leaders in community science. We revised our budget to compensate them for their expert time and consultation.

Second, one of their foundational recommendations was to have two parallel tracks for co-developing the Toolkit: one for contributory science project leaders and one for community science project leaders. They recommended training two EJP members to co-facilitate the Toolkit development process with community science project leaders. As part of the equitable practices we implemented, we arranged for the co-facilitators to be trained in human subject research ethics, which expanded their access to resources such as university-based (and -funded) training that could benefit both themselves and the communities they served. We also revised our budget to compensate them for the time they spent training and co-facilitating. The co-facilitators were instrumental in creating a welcoming space for focus group participants. Without their presence, it is highly unlikely the co-development would have been successful in bringing the EJP perspective into the Toolkit.

Third, we proposed to the IRB the implementation of an equity framework that included different financial payments for the involvement of community science practitioners of the EJP. Participation was estimated to take approximately 3–4 hours total, between two electronic surveys, one online focus group, and one online workshop. We offered a $10 gift card to practitioners of contributory projects, in line with typical research incentive practices. In contrast, for the community practitioners doing the same work, we offered payment roughly based on hourly wages for skilled labor, which resulted in their choice of a $100 check or debit card for participation. Our IRB was immediately receptive to our project’s challenges and approved this solution to overcome them, and the project successfully accomplished its goals of including this constituency’s perspectives and input, resulting in a better Toolkit.

There are benefits and risks to the adoption of “fairness as equity” frameworks in research payments. One benefit is instrumental: if equitable payment makes it more economically feasible for disadvantaged members of society to participate in research, research may be more accurate because it includes a more representative sample. As Bélisle-Pipon et al. argued, “providing basic means to minimally offset socioeconomic disparities might ensure wider participant diversity” (pp. 128–129).

Second, equitable payment may better acknowledge the different circumstances of different research approaches. Human subject research (especially clinical), for example, is typically conceived as research “on” subjects in an asymmetrical power relationship with the researchers. This common framework prioritizes minimizing possible payment levels to prevent exploitation of vulnerable subjects. In contrast, engaged research is often research “with” collaborating community members, in a much more equal position of power with researchers. In such cases, the risk of exploitation is not the risk of enticing vulnerable subjects to engage in risky behaviors they otherwise would not. Instead, the risk of exploitation is inducing disadvantaged community practitioners to volunteer their time for free to fix a problem they did not create. This form of exploitation can be avoided by compensating them for their time in the effort to help solve it.

Third, equitable payments allow for recognition of historic and current inequities posing barriers to research participation. Once the impact of these inequities on research participation is acknowledged, payment for research can be considered in different terms. As Persad et al. (2019) put it, “[d]ifferential compensation can be acceptable when some research participants commit more time or assume greater burdens than others, or if inter-site differences affect the value of compensation” (Persad et al., 2019).

However, abandoning an equality approach to research incentivization also comes with potential risks that should be acknowledged and addressed. ¹ First, wholesale abandonment might encourage researchers to offer higher incentives to those with fewer resources to encourage them to engage in risky research (although Institutional Review Boards’ requirements of risk-benefit balance would impose a risk ceiling). Second, it might seem to condone paying incentives according to socioeconomic status—that is, paying higher incentives or compensation to those who already have higher income, to compensate them for opportunity costs of participation in research.

We acknowledge these risks, and future work urging adoption of equity approaches will need to develop robust theories for their implementation. ² We lack the space to do so here, but offer three caveats for the application of our suggestion.

First, we are not urging the wholesale adoption of equity approaches to research payments in all areas of human subject research. For example, research with higher personal risk, as clinical research sometimes poses, may be a category in which equity approaches are inappropriate due to the risk of coercion. Second, even within community-based or engaged research, context varies significantly, and the appropriateness of equity approaches will similarly vary. Finally, equity approaches are not a form of reparations for past injustices. Instead, they take into account past and current injustices and ensure that research participation does not sustain, create, or amplify them. We agree with Bélisle-Pipon et al.’s calls to revisit ethical frameworks for research participation payments. Here, we argue that in some circumstances, the failure to provide equitable payments for research participation may introduce new injustices given an unjust history.