Abstract
Sickle 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.
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Acknowledgements
We acknowledge the support and cooperation of our patients who have taught us many valuable lessons mentioned in this manuscript. We also acknowledge financial support from the CTRITH research grant funded by DBT/Wellcome Trust India Alliance.
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P.A. is supported by DBT/Wellcome trust India Alliance grant no. IA/CRC/20/1/600007. D.B. is permanent faculty and supported by JSS Medical College.
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P.A. made substantial contributions to the conception and wrote the first draft of the manuscript. D.B. revised it critically for important intellectual content. Both P.A. and D.B. read and approved the final manuscript to be published.
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Aggarwal, P., Bhat, D. Genetic counseling in sickle cell disease: Insights from the Indian tribal population. J Community Genet 14, 345–353 (2023). https://doi.org/10.1007/s12687-023-00661-z
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DOI: https://doi.org/10.1007/s12687-023-00661-z