Genetic counseling in sickle cell disease: Insights from the Indian tribal population

AbstractSickle cell disease (SCD) is an inherited disorder of hemoglobin. With an overall prevalence of 4.3%, India is the second-largest hub of SCD after Africa. Genetic counseling (GC) is the most cost-effective intervention to reduce the burden of a genetic disease including SCD. Even though GC ’s role in reducing SCD birth prevalence is well established, it is still not incorporated into Indian national policy and is unavailable to most Indians approaching their marriageable age and childbirth. GC perception and efficacy have also not been explored yet among young adults, especially in Indian tribal communities. Counseling in these communities requires careful consideration of their socioeconomic, cultural, and ethical values. Community engagement with local tribes and healthcare infrastructure in a multitier approach is essential for an effective GC. This review aims to provide healthcare providers and genetic counselors with the essentials of GC in the prevention and management of SCD among tribal communities based on the author’s counseling experience in South India.
Source: Journal of Community Genetics - Category: Genetics & Stem Cells Source Type: research