Institution: Infectious Diseases Institute, Makerere University

Project Affiliation: Ethical and Social issues in Informed Consent Processes in African Genomic Research

Abstract

Introduction
There is a high demand for genomics research results from research participants. However, there is minimal literature on whether people living with HIV would like to receive their individual results from pharmacogenomics research. This study explored the factors influencing participants’ preferences and reasons for desire to receive individual results from pharmacogenomics research.

Methods
A convergent parallel mixed methods study design was conducted. A survey was conducted among 225 participants using an investigator-assisted questionnaire. Five focus group discussions were also conducted with 30 purposively selected participants. Quantitative data was analyzed using a modified Poisson Model. Thematic analysis was used for the qualitative data. Triangulation was done for clear understanding of the data.

Results
Majority were female (60%) with a median age of 38 years. Half of the participants had attained post primary education, 72% were self-employed and 65% were living in nuclear families.
The majority 98% wanted to receive their primary results. Of these 149 (66%) wanted to receive all results (both primary and some incidental findings), 72 (32%) wanted to receive some incidental findings) and only four (1.8%) did not want to receive any results at all. Among those who wanted to receive some incidental findings, 93% preferred well-established results and 96% preferred results of treatable and preventable conditions. Participants’ preferences were influenced by religion (p=0.036), duration on antiretroviral therapy (p=0.001) and the duration of receiving care at the HIV treatment and care clinic (p=0.045). There were three emergent theme: awareness about feedback of individual results; reasons for participants’ desire to receive results; and reasons for not wanting to receive results from pharmacogenomics research.

Conclusion:
Overall, participants desire to receive feedback from pharmacogenomics research; specifically, results that are well established and clinically actionable. Researchers ought to educate participants about genomics research and the ethical, legal and social implications of genomics results before returning them. This way, participants will make an informed decision regarding the choices of results they prefer to receive and minimize possible harm that may result from the study findings.

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