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Breaking the Silence Around Genetic Disorders: Community Conversations on Sickle Cell Disease and Thalassemia in India
Subject area: Biological & Medical Sciences · Area of research: Health Sciences
DOI: https://doi.org/10.64388/IREV9I11-1718408
Abstract
Sickle Cell Disease (SCD) and β-thalassemia have emerged as major public health concerns in India, particularly in regions where endogamous marriage practices and low levels of genetic awareness persist. Although the Government of India has introduced several clinical and screening initiatives under the National Sickle Cell Anemia Elimination Mission, the success of these programs is often hindered by stigma, fear, and inadequate community participation. This paper explores how socio-cultural barriers, gender-based discrimination, and misconceptions surrounding hereditary disorders obstruct early diagnosis and preventive healthcare, especially among rural and tribal populations. The study argues that sustainable prevention cannot rely solely on biomedical interventions. Instead, India must adopt community-centered approaches that encourage open dialogue, public education, and Social and Behavioral Change Communication (SBCC) through schools, social organizations, healthcare workers, and regional media platforms. Such interventions can normalize premarital and prenatal screening, reduce stigma, and strengthen preventive healthcare practices.
Keywords
Genetic Disorders, Sickle Cell Disease, Thalassemia, Public Health Policy, Community Engagement, Stigma, India.
How to cite this paper
@article{1718408,
author = {Pranoti Bagde},
title = {Breaking the Silence Around Genetic Disorders: Community Conversations on Sickle Cell Disease and Thalassemia in India},
journal = {Iconic Research And Engineering Journals},
year = {2026},
volume = {9},
number = {11},
pages = {4519-4522},
issn = {2456-8880},
url = {https://www.irejournals.com/formatedpaper/1718408.pdf},
abstract = {Sickle Cell Disease (SCD) and β-thalassemia have emerged as major public health concerns in India, particularly in regions where endogamous marriage practices and low levels of genetic awareness persist. Although the Government of India has introduced several clinical and screening initiatives under the National Sickle Cell Anemia Elimination Mission, the success of these programs is often hindered by stigma, fear, and inadequate community participation. This paper explores how socio-cultural barriers, gender-based discrimination, and misconceptions surrounding hereditary disorders obstruct early diagnosis and preventive healthcare, especially among rural and tribal populations. The study argues that sustainable prevention cannot rely solely on biomedical interventions. Instead, India must adopt community-centered approaches that encourage open dialogue, public education, and Social and Behavioral Change Communication (SBCC) through schools, social organizations, healthcare workers, and regional media platforms. Such interventions can normalize premarital and prenatal screening, reduce stigma, and strengthen preventive healthcare practices.},
keywords = {Genetic Disorders, Sickle Cell Disease, Thalassemia, Public Health Policy, Community Engagement, Stigma, India.},
month = {May},
doi = {https://doi.org/10.64388/IREV9I11-1718408}
}