Research participants’ perspectives on compensation for participation in biomedical research in cancer patients at Uganda Cancer Institute
Nagawa, Ruth Victoria
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Background: Compensation of research participants in health-related research is a common practice that has existed globally for the last 100 years but is implemented differently in diverse research settings basing on generic and local guidelines, which mostly have an international appeal. The institutional and national guidelines on compensation of research participants in Uganda are still evolving and sometimes may not adequately address practical ethical concerns and ethical dilemmas, for instance, those arising from undue inducement to potential participants and inadequate compensation for participants’ time and effort, as well as tendencies towards participant exploitation or economic injustice. We sought the views of research participants as part of the ethical discussion on compensation in biomedical research. Objectives: To explore research participants’ views on compensation, determine their preferred compensation method and explore the factors that influence their choice of compensation method. Methods: This was a qualitative cross-sectional study that employed in-depth interviews with 22 women aged 20 to 49 at the Uganda Cancer Institute in 2019. Data was analyzed thematically and managed using Nvivo 12. Results: Overall participants reported that compensation was a form of facilitation that eases their participation without incurring out of pocket expenses, a token of appreciation for their participation, and also a means of strengthening the relationship between the researchers and participants. Majority of the participants felt that the amount of compensation offered was not adequate considering the time input, inconveniences and travel expenses. Most of the participants regarded compensation as a benefit in research because they were availed with financial support to meet research-related expenses, however majority would go ahead to participate even if it was not offered because the study would provide health benefits to them as well as future patients. Participants expressed interest in receiving compensation in several forms such as money, non-monetary compensation and a combination of monetary and non-monetary compensation. These preferences were largely influenced by their needs and perceived challenges faced during participation in research. Conclusion: Findings suggest that compensation is a continuous endeavor where participants ought to feel valued for their contribution within the research relationship. Deliberate, appropriate and effective ways of participant compensation would go a long way in protecting participants from harm and exploitation in biomedical interventions. There is need to develop a framework that can guide researchers when determining compensation for participants. Researchers should ensure that participants understand all aspects of the research so as to make informed decisions regarding participation in research. Community consultations should be encouraged to help in identifying appropriate compensation packages for the participants.