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

Results of Quantitative Data

In a recent survey, 221 individuals participated out of an initial 231 contacts, with 10 declining to take part. The demographic composition and research experience of these participants are depicted in Table 1. The majority were female, comprising 60% of the respondents, with a median age of 36 years, ranging from 31 to 42. Over half had completed at least a secondary education, standing at 55.7%, while 72.4% were self-employed. Monthly earnings of less than 500,000 UGX (approximately $130 USD) were reported by 81.4% of the participants.

Notably, 59.7% had participated in three or more research studies, indicating a significant level of engagement and familiarity with the research process. Four participants offered suggestions to enhance understanding of pharmacogenomic research. They proposed the use of visual aids such as videos to better illustrate the interaction between genes and antiretroviral drugs (ARVs). This recommendation underscores the desire for more interactive and visually engaging educational tools to facilitate comprehension.

A participant succinctly summarized the need for such aids:

"I suggest researchers show us some videos… showing how these genes interact with the ARVs that we are taking. It will give us a better understanding of how the drugs we take, especially when we see something other than imagining the things they read for us on paper… so that I make the decision when knowing what it’s all about."