Prospective analysis of stakeholder expectations and preferences for Feedback of Individual Genetic Findings in genomics research in Botswana and South Africa

IFGENERA项目概述

Project Summary IFGENERA Project 2 One important question in discussions around the feedback of individual genetic findings generated in the context of genomics research, relates to stakeholder expectations of and preferences for which findings are to be fed back, to and by whom, and when. A second question relates to what professionals involved in the regulation of science in Africa think about opportunities for and challenges in feeding back individual genetic research findings. In this project, we propose to conduct two studies that investigate these issues in two different stakeholder communities in Botswana and South Africa: genomics research participants and science regulators. Key questions that we will investigate relate to what people may want to know, why they want to know it, and how they would like to receive such results. Other questions relate to whether research results need to be verified in a diagnostic laboratory, and how important it is that participants who receive results, have access to the interventions that would mediate the effects of the genetic finding. Our study aims are: Aim 1: To explore expectations and preferences for feedback of individual genetic research findings with (parents of) participants involved in genomics research in Botswana and South Africa. Under this aim, we will conduct deliberative Focus Group Discussions with research participants in genomics research. This component of our study will take place in Gaborone, Botswana and Cape Town, South Africa, using three ongoing genomics research projects. In Botswana, we will involve parents of children and adolescents involved in the H3Africa CafGen project. In South Africa, we will involve parents of children and adolescents involved in genomics research on neurodevelopmental conditions, and adults involved in psychiatric genomics research on psychiatric disorders (schizophrenia and bi-polar disorder). Aim 2: To explore the views on feedback of individual pertinent and incidental genetic research results with people involved in developing, implementing and applying ethical standards and policies for return of individual study results in genomics research in Botswana and South Africa. Under this aim, we will conduct in-depth interviews with people involved in developing, implementing and applying ethical standards and policies for return of individual study results in genomics research in Botswana and South Africa. Specifically, this will involve interviews with healthcare providers, researchers, medical genetics professionals and members of ethics committees involved in genomics research.