Patient, parent and provider perspectives on sickle cell disease genetics research in Jamaica.

ABSTRACT: Advances in genetics and genomics research are revolutionizing the way we understand sickle cell disease (SCD) and approach its treatment and management. Much of this research has been conducted in high-income countries and so much of the available data is skewed towards these populations. Efforts are now being made to facilitate this research in low-and-middle-income countries (LMICs) through capacity building and strengthening. These efforts must also include understanding context specific SCD stakeholder perspectives and attitudes to guide genetics and genomics research in these populations. This qualitative study used semi-structured in-depth interviews to investigate perspectives on SCD genetics research among 10 SCD healthcare providers, 10 individuals living with SCD and 9 parents a

SUBMITTER: Jones K 

PROVIDER: S-EPMC12829944 | biostudies-literature | 2026

REPOSITORIES: biostudies-literature