Application of the Community Dialogues Method to Identify Ethical Values and Priorities Related to Pharmacogenomics

Abstract

Given the expansion of genetics in medicine, there is a growing need to develop approaches to engage patients in understanding how genetics affects their health. Various qualitative methods have been applied to gain a deeper understanding of patient perspectives in topics related to genetics. Community dialogues (CD) are a bi-directional research method that invites community members to discuss a pertinent, challenging topic over the course of a multi-week period and the community members openly discuss their positions on the topic. Authors discuss the first application of the CD method to the topic of pharmacogenetics testing. Additional CD are needed to engage diverse participant populations on this topic to improve genetics literacy, enhance physician engagement and drive policy change.

The role of community engagement in promoting research participants’ understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment

“…This is because these results can lead to social and psychological harm to participants and their family members [32]. Studies have reported the complex nature of genomic terms that are difficult to understand even among the literate populations, low literacy levels in many resource limited settings, and community misconception of linking participation and receiving results from genomic and genetic results to establishing the paternity of children and other family members as contributing factors to participants' inadequate understanding of pharmacogenomic and genomic information [32,[52][53][54]. To overcome these challenges, it is important that communities likely to benefit from a genetic or genomic study are actively engaged throughout the study.…”

“…We asked stakeholders about the various ways of obtaining community consensus on the kinds of results they would wish to learn from pharmacogenomic research. All stakeholders across the different participant categories (54) agreed that a community is a complex group of people with varying values, beliefs and interests. Therefore, stakeholders emphasized the need to first define the specific groups of people within the community that have potential to benefit from the genomic research study, and later, identify the key gatekeepers prior to accessing the potential beneficiaries.…”