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Genes, Ethics, And Laws: Unravelling The Complexities Of Genetic Counselling In India




Priyanshi Jain, LLM, Gujarat National Law University, Gandhinagar


ABSTRACT


Genetic Counselling (hereinafter referred to as “GC”), introduced in India in 2007, remains underutilized despite its significant potential to mitigate risks and complications associated with the country’s substantial burden of genetic disorders. As of June 2023, India has only 76 genetic counsellors to serve a population of 1.3 billion, compared to approximately 4,000 counsellors in the United States for a population of 0.3 billion. This disparity underscores the systemic challenges impeding the adoption of GC in India, even as the prevalence of genetic conditions such as congenital malformations, G6PD deficiency, down syndrome, beta-thalassemia, and late-onset multifactorial diseases continues to rise. The limited adoption of GC in India is attributed to several factors, including low public awareness, high costs that make it inaccessible to many, ethical complexities, and legal challenges related to privacy, autonomy, confidentiality, and the lack of a unified regulatory framework. The Author through this research aims to critically examines the current state of GC in India, with a focus on its accessibility, ethical considerations, and legal challenges. By comparing India’s approach with international practices, the study aims to identify barriers and propose actionable strategies to enhance the reach and efficacy of GC services, addressing the pressing genetic health needs of the Indian population.



Indian Journal of Law and Legal Research

Abbreviation: IJLLR

ISSN: 2582-8878

Website: www.ijllr.com

Accessibility: Open Access

License: Creative Commons 4.0

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Licensing: 

 

All research articles published in The Indian Journal of Law and Legal Research are fully open access. i.e. immediately freely available to read, download and share. Articles are published under the terms of a Creative Commons license which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

 

Disclaimer:

The opinions expressed in this publication are those of the authors. They do not purport to reflect the opinions or views of the IJLLR or its members. The designations employed in this publication and the presentation of material therein do not imply the expression of any opinion whatsoever on the part of the IJLLR.

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