Keywords:
Ethics, research; Indigenous health; Informed consent; Research design
Abstract:
The importance of including minority populations in research is increasingly recognised. Advances in clinical and research genomics have highlighted the need for and challenges of inclusion of Indigenous populations in genomic studies. Previous negative experiences in genomics research in Indigenous populations have placed substantial barriers, but the opportunity now exists to take a fresh approach through genuine partnership with, and leadership from, Indigenous communities and their representatives. In this article, we reflect on the lessons learned from a recent genome‐wide association study of rheumatic heart disease (RHD) with Aboriginal Australian participants. Our aim here is to add value to what is considered best practice in genetic research with Indigenous peoples and place our experience in the context of international standards. We provide some practical recommendations for other researchers in what is a complex and sensitive area.