How much money would someone have to give you for a tube of blood? An MRI? Do you care what it would be used for or how the data is stored? Incentives provided for human research participants can present numerous ethical dilemmas to researchers. Unfortunately, the Tri-Council Policy Statement from the Canadian government provides very little guidance regarding the matter, stating, “This Policy neither recommends nor discourages the use of incentives. The onus is on the researcher to justify to the Research Ethics Board (REB) the use of a particular model and the level of incentives,” going on to recite a litany of items that the researcher and REB need to take into consideration when deciding how incentives should be set, but without giving any concrete guidelines.
Broadly put, incentives can be broken down into two distinct categories: reimbursement and compensation. Reimbursement is defined as “money given to the research participant that reflects out of pocket expenses associated with participating in a research study,” while compensation is any “money or item given to the research participant that acknowledges the time and effort they have provided in participating in the research.” The former is pretty easy to understand and has to do with the basic tenet that research participation should be accessible for everyone. As such, the researcher should cover any direct expense that was incurred by the participant in order to be in the study, such as the cost of transportation or childcare.
The ethical dilemmas don’t really arise until we get to compensation. When determining appropriate compensation, researchers have to toe a fine line between giving enough to ensure that participants feel their time, discomfort, and any risks have been adequately valued, but not so much as to make the compensation itself sufficient reason to participate in the study. Herein lies the problem. Compensation can be a great way to encourage recruitment by offsetting any negative impact of the study on the participant; however, it should not be the sole incentive to participate, lest it skew the results of the study and unintentionally exploit vulnerable cross-sections of the population.
Without concrete guidelines denoting what constitutes “reasonable” compensation, the researcher is often left to their own devices when picking that magic number. As you might imagine, this can get a bit tricky. Most research doesn’t require participants to be trained in a specific skill set, so one could work under the assumption that in order to compensate for time lost, the researcher could pay an amount similar to what an unskilled worker would receive for the time it takes to participate, plus a bit extra for travel. However, even if we assume that all potential participants want to volunteer their time for the study in order to benefit scientific progress, it would nonetheless lead to a skewing of the sample to participants with lower socioeconomic status, since individuals that earn more money would likely be less willing to trade their valuable time for lower earnings. On the flip side, if the researcher sets compensation high to attract people of all socioeconomic statuses, this could bias the study by encouraging individuals, against their best interests, to surpass the risks they would normally be willing to take in the pursuit of improved health or scientific progress. Nor is it feasible to compensate individuals differently based on their typical wage or financial needs, as that would bring about even more problems regarding fairness and inevitably lead to an administrative headache.
Even more issues arise when the research in question is being conducted internationally, most notably in developing countries. What counts as “reasonable” compensation may not be the same locally and abroad, especially if the standard of living is not equal. However, allowing for lower compensation at international research sites runs the risk of “research outsourcing”, with researchers choosing a location based on the associated costs rather than the scientific relevance. With this in mind, it is essential for researchers to justify their decision to conduct research in a developing country, showing not only that the study would not be feasible locally, due to scientific reasons such as low disease prevalence or incidence, but also that the study will benefit the country or population being used. Additionally, ethics approval should be obtained from both the researcher’s primary institution and at the local research site to ensure fair and diverse input on the proposed research, reasonable compensation, cultural sensitivities, and other local issues.
These are only a few of the many problems that one may encounter when attempting to determine appropriate compensation for a study. Ethics boards exist to help guide these decisions and ask questions that may have been overlooked, but the final responsibility lies with the investigator. It is every researcher’s obligation to ensure that the studies they conduct meet ethical standards that protect research participants, just as they are held to the highest scientific standards. Since the aim of research is to explore something that is not yet fully understood, the risks to participants are not always fully appreciated. Abiding by clear-cut ethical principles and creating set definitions for what constitutes reasonable compensation and reasonable risk are the best ways for us to balance advancing the pursuit of knowledge with respecting research participants and maintaining the trust of the general public.