COMPENSATION FOR STUDY OF PARTICIPATION IN TRIBAL COMMUNITIES: A RESEARCH NOTE

Meghan Doughty*

The use of monetary compensation or monetary incentives for participation in research continues to be debated within the medical and social science communities.  The debate ranges from whether compensation or incentives are necessary to assure representativeness and participation in surveys, to the ethics of providing them in vulnerable populations. Yet, most academics agree that compensation and incentives are here to stay. Scholars VanderWalde and Kurzban (2011:545) contend that, “current research ethics no longer requires the formulation of subject as altruist to allow for ethical research.” They posit that the focus of researchers and institutions should be on the purpose behind paying research participants. This paper will specifically examine the purpose of monetary compensation for research participation in American Indian (AI) and Alaska Native (AN) communities. First, it will distinguish between compensation and incentives for participation in research. Next, it will consider broader empirical research on the use of monetary compensation or incentives with the general public, as well as with vulnerable populations. Then, it will detail current best practices and attitudes towards compensation, monetary or otherwise, for participation in research in AI and AN communities. This paper concludes with the argument that monetary compensation should be used in AI and AN communities. Its use demonstrates respect for individual community members’ contributions to science, and conforms to community-based participatory research (CBPR) practices and tribal institutional review board (IRB) expectations regarding participation in research. However, this research note can do little more, due to the lack of empirical research on this topic.

Although monetary compensation and incentives for participation in research are often used interchangeably in the literature, the two serve different purposes for researchers. Compensation is a payment for the service that the participant has provided to the researcher. It is intended to equalize the relationship between the participant and the researcher. In contrast, incentives are “benefit[s] designed as a motive or incitement to action (Grant and Sugarman 2004:720).” Incentives can be provided both pre and post participation in research, whereas compensation is provided after participation and often to cover the logistical costs of participation in the research. Additionally, incentives can be targeted to persons who might otherwise refuse to participate, but compensation is given to all participants.

Compensation and incentives share practical and ethical concerns.  Both approaches raise the possibility of ‘undue inducement’ of participants and exploitation of vulnerable and resource-constrained populations.  By offering compensation or incentives, participants may expose themselves to higher levels of risk than they would normally be inclined to do (Beckford and Broome 2007).  Incentives, monetary or otherwise, to recruit research participants can be problematic when the participant is in a dependency relationship with the researcher, and when the risks of research are high or the research is degrading (Grant and Sugarman 2004). Neither compensation nor incentives are free from ethical concern, thus as VanderWalde and Kurzban (2011) argue, researchers must explicitly state the purpose of using either.

The limited empirical studies on the topic of monetary compensation and incentives for participation in research demonstrate that, when implemented ethically, compensation and incentives increase study participation and demonstrate respect for the study participant. An experimental study of individuals’ motives for participating in research surveys found that monetary compensation or incentives, used interchangeably in this study, significantly increased responses to advance letters soliciting participation in a survey (Kropf and Blair 2005). Abeler and Nosenzo’s (2015) experiment indicated that sign-up rates for participation in laboratory experiments drops by two-thirds if the recruitment letter only appeals to the importance of the research and compensation is not mentioned. Also, several meta-analyses found that the use of monetary incentives in interviewer-led surveys increased response rates by reducing refusals (Singer and Ye 2013; Singer 2002; Singer and Kulka 2002; Cantor, O'Hare and O'Connor 2008). It is important to note that research by Singer and Couper (2008) has found that larger monetary incentives do not convince respondents to incur higher risks than they normally would in behavioral research. An experiment conducted by Singer and Ye (2013) focused on the use of monetary incentives in biomedical research echoes this finding. Lastly, Permuth-Wey and Borenstein’s (2009) review of empirical data on the ethical implications of monetary compensation or incentives for research participation suggests compensation demonstrates appreciation for the participants’ contribution to clinical and behavioral research. The authors also state that researchers offering monetary compensation or incentives for research participation should tailor the compensation or incentives to the cultural and societal norms of the study population (Permuth-Wey and Borenstein 2009).

This point is echoed in research with vulnerable populations on the use of monetary compensation or incentives for participation in research. A randomized-control trial on the use of incentives in vulnerable populations (in this particular study vulnerable populations were defined as lower socioeconomic or lower education households and new citizens) for a telephone survey on food allergens in Canada, found a between group increase of 7.4% between households who were offered a five dollar incentive to participate in the survey and those who were not (Knoll et al.,2012). This finding suggests that incentives increase the presence of vulnerable populations in research participation. Baxley and Daniels (2014), using nationally representative United States data, found that another vulnerable population, minority adolescents, will participate in research without compensation in order to help others. However, if participation in the research involves significant time, time away from work or incurs transportation costs, the majority of minority adolescents believed compensation or a stipend was necessary for participation (Baxley and Daniels 2014). Additionally, a mixed-methods study on incentives, compensation and reimbursement conducted in Zimbabwe found that 90% of study respondents expected reasonable compensation for their participation in medical research (Mduluza et al. 2013). Thus, research suggests that the use of reasonable monetary compensation or incentives is expected by vulnerable populations and increases their participation in research.

Many AI and AN communities have developed general best practices for research, including around compensation, due to negative experiences with so-called helicopter research. 1 The National Congress of American Indians (NCAI) recommends CBPR as the ideal approach for research with AI and AN communities because it involves consultation or incentives and written agreements with tribes (Memorandums Of Understanding’s and tribal IRB approval) about research design, including specifications for compensation or incentives for participation in studies (Sahota 2010).  In “Suggested Guidelines for Institutions with Scholars Who Conduct Research on American Indians,” Devon Mihesuah (1993:135) recommends that “informants should be given fair and appropriate return” through an established agreement with the researcher. Nielsen and Gould (2007) advise that locals be compensated for the information they provide and stress the need for reciprocity between AI and AN knowledge-holders and researchers. Examples of reciprocity include compensation for their time and the expense of getting to the research site, credit for their contribution to the study, or some other exchange, negotiated with the tribal council or IRB. Sobeck, Chapleski, and Fisher (2003), using case study research, echo other authors in arguing that benefits to project participants must be built into the project design and that respondents should receive compensation. The authors’ also state that it is “a reward for being the most important part of the research (Sobeck et al. 2003:82).” Christopher (2005:48) repeats that tribal communities must receive some concrete benefit from the research, not “the compilation of useless knowledge ‘for knowledge’s sake’,” and that researchers must place the needs of the community ahead of their self-interest. 2 The general sentiment surrounding best practices regarding compensation for AI and AN communities can be summarized in one sentence, “If researchers make use of participants’ ideas and time, they must give back” (Davis and Reid 1999).

The few empirical studies on AI and AN attitudes toward participation in research have found the concept of giving back via monetary compensation to increase willingness to participate. A study of the barriers to participation in clinical trials for AI and AN populations found that 79% of tribal students were willing to participate in clinical trials if they were paid for participation and the main barriers to participation were logistical concerns rather than attitudinal ones (Sprague et al. 2012). In Buchwald et al.’s (2005) study of the attitudes of urban AI and AN populations towards participation in research, the odds of participation were decreased if the federal government led the study (from 0.5 to 0.3) and if compensation was not provided (from 0.7 to 0.5). Additionally, AI students have been found to be more likely to participate in research studies which use CBPR principles, such as bringing funds to the community (Noe at al., 2007; Sahota 2010).  These findings reiterate the importance of compensation for participation in research within AI and AN communities.

The existing evidence suggests that monetary compensation for participation in research should be used in AI and AN communities. Monetary compensation, as opposed to incentives, demonstrates respect for the individual community members’ contributions to science and helps ameliorate the logistical difficulties of participating in research. Often, tribal IRBs and councils include compensation as part of their Memorandums Of Understanding with researchers, making it a mandatory condition of research in many communities. Additionally, compensation is a part of the CBPR principles of giving back to the community in a tangible form. It also increases the likelihood of AI and AN individuals participating in research studies. Monetary compensation in AI and AN communities should have a purpose, such as a demonstration of respect, or reimbursement for the logistics of participation, and must be negotiated with the tribal IRB or council. However, it should be noted that monetary compensation of individual participants does not relieve researchers of their more general obligation to give back to the AI and AN communities that have allowed the researchers to conduct research with them.

More empirical evidence is needed to fully understand and better guide researchers, tribal councils, and IRBs on the use of compensation or incentives in AI and AN communities. This paper has reviewed the scarce literature on the use of compensation with AI and AN populations and has found a variety of topics that need to be investigated further. The most glaring need for further information revolves around the amount or type of compensation that should be provided to individual AI and AN research participants. Potential research questions include: should compensation be limited to reimbursement for travel to the research site, something that will generally be more arduous for AI and AN participants living in remote locations in Indian Country or Alaska Native Villages, or should a flat compensation amount be offered? If a flat compensation amount is offered, what is the appropriate amount to ensure ethical informed participation in the study and avoid ‘undue inducement’ in tribal communities that may have high levels of poverty? Also, could a form of compensation, other than monetary, be offered, such as food? Other areas of research could include community versus individual compensation and the effect of childcare reimbursement on study participation. Additionally, as Permuth-Wey and Borenstein (2009) argue, compensation for research should be tailored to the population from which study participants are drawn. In AI and AN communities, this means in partnership with tribal councils and IRBs and in keeping with CBPR principles.

Monetary compensation and incentives are a debated but accepted aspect of modern research. They must be undertaken with careful thought and sensitivity, particularly with vulnerable populations. However, when implemented in a non-coercive manner, they can demonstrate respect for research participants, ease the logistical burden of participation in research and increase participation and representativeness in research samples. More empirical research is needed to determine how to appropriately and ethically tailor compensation to tribal communities and members. This article serves as a jumping off point and a call for future research on this topic.

ENDNOTES

1 A practice in which researchers, often literally, fly into communities to interview subjects, take samples or administer surveys and then disappear from the community.

2 The provision of a stipend to respondents is considered vital in achieving meaningful and adequate participation and demonstrates appreciation for the respondents' time. In addition, within many tribal communities, compensation is necessary to obtain permission to conduct surveys and/or interviews with tribal members; without compensation, tribal councils will not grant permissions to do this research with their people/citizens.

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