This article explores the significance of community engagement (CE) in enhancing participants' understanding of pharmacogenomic research results, particularly among people living with HIV (PLHIV). The study was conducted through a qualitative approach involving 54 stakeholders, including community representatives, researchers, and research ethics committee members.
Pharmacogenomic research, which investigates how an individual’s genes influence their response to medications, is increasingly important in sub-Saharan Africa to improve HIV treatment. However, the complexity of genomic information, combined with low literacy levels and language barriers, often leads to misunderstandings among research participants. This study aimed to identify the most effective community engagement strategies to overcome these challenges and ensure that PLHIV can make informed decisions based on their pharmacogenomic results.
Five major themes emerged from this study:
- Benefits of Engaging Communities. Stakeholders emphasized that engaging communities from the start of the research process facilitates better understanding of pharmacogenomic results. Early engagement helps participants and communities learn about the variability in drug responses due to genetic differences, fostering trust and long-term relationships between researchers and the community.
- Community Consensus on Results. The study highlighted the importance of obtaining community consensus on the types of pharmacogenomic results to be returned. This involves defining the community, providing generalized information about the research, and balancing individual and community interests to minimize ethical concerns.
- Communication of Research Information. Effective communication is crucial in ensuring participants understand the research results. The study suggested using local languages, use of genetic counsellors, and culturally relevant methods like music, dance, and drama to convey complex information in an accessible way. However, care should be taken in ensuring the intended information is not lost in the process.
- Roles of Community Stakeholders. Stakeholders identified various roles for different groups in promoting understanding and utilization of research results. For example, Researchers should provide clear, understandable information regarding the results/research, while community members and ethics committees should help contextualize and communicate this information to the broader community.
- Challenges in Community Engagement. The study acknowledged several challenges in engaging communities, including the difficulty of selecting appropriate communication methods for diverse, multilingual populations, and the lack of trained genetic counsellors in Uganda. These challenges could be similar in other contexts and should be evaluated carefully to overcome community engagement challenges.
The paper concludes that community engagement remains an important and crucial part of research for promoting understanding of pharmacogenomic research among PLHIV. By creatively adapting existing CE approaches, researchers can effectively communicate pharmacogenomic information, helping participants make informed decisions about their health. The study also calls for capacity building in genetic counselling and the development of guidelines to support the return of pharmacogenomic research results to participants in a culturally sensitive manner.
KEY RESOURCES.
- Ralefala D., et al., Participants’ Preferences and Reasons for Wanting Feedback of Individual Genetic Research Results From an HIV-TB Genomic Study: A Case Study From Botswana
- Matshabane O.P., et al., Preferences and expectations of feedback of individual genetic research results in African genomics: Views of South African parents of children with neurodevelopmental disorders
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