Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute

Little is known about how people living with HIV should be engaged in the decision-making process for returning individual pharmacogenomic research results. This study explored the role people living with HIV want to play in making decisions about whether and how individual results of pharmacogenomic research should be presented to them. A convergent parallel mixed methods study was conducted, comprising a survey of 221 research participants and five deliberative focus group discussions with 30 purposively selected research participants. Most participants (122, 55.2%) preferred the collaborative role, 67 (30.3%) preferred the active role and 32 (14.5%) preferred the passive role. Factors that significantly influenced preference for an active role compared with a collaborative role were marital status (OR: 0.282, p = 0.013), research experience (OR: 4.37, p = 0.028), and religion (OR: 2.346, p = 0.041). The reasons proffered for the active role included prior experience with antiretroviral treatment and increased exposure to research activities. The reasons given for preferring the passive role included limited level of awareness about the interaction between patients' genes and drugs, trust in researchers to make the right decision, and fear of making decisions with harmful implications. Overall, findings from our study show that participants want to be engaged in the decision-making process. Research teams ought to provide adequate and simple information about the pharmacogenomic research and implications of the results to support participants' informed decisions.