Indian SARS-CoV-2 Genomics Consortium

Genomic surveillance helps track novel pathogens and variants of known pathogens.

National Ethical Guidelines for Biomedical and Health

Research involving Human Participants, 2017
The Indian Council of Medical Research’s (the “ICMR”) National Ethical Guidelines
for Biomedical and Health Research involving Human Participants, 2017
(“Biomedical Guidelines”) regulate the testing of biological material and data
generated from it.

National Guidelines for Gene Therapy Product Development

and Clinical Trials, 2019
In addition to the Biomedical guidelines which provides generic guidelines to be
followed for carrying out all kinds of research and clinical trials involving human
participants; the National Guidelines for Gene Therapy Product Development and
Clinical Trials, 2019 were issued by the ICMR in the specification to research and
development of gene therapy products.

Status of Genetic Privacy in India In 2018, The Delhi High Court ruled against United India

Insurance Company's discrimination in health insurance against a person with a heart disease

that was thought to be a genetic disorder. Discrimination in health insurance against people

based on their genetic makeup or genetic origin, in the absence of adequate genetic tests and

intelligible differentia, is unconstitutional, the court ruled. The Supreme Court later partly

blocked the order. A law that prohibits genetic discrimination is urgently needed in India

today. We must avoid discrimination and uphold "fair justice under the law" in this age of

widespread genetic testing. Genetic discrimination is a breach of Article 14, which guarantees

that everyone is treated fairly under the law. The Supreme Court of India unanimously stated

that the Right to Privacy is a Fundamental Right under Article 21 in Justice KS Puttaswamy

(Retd.) & Anr. v. Union of India. Since everyone's genome is a private matter, genetic
discrimination must be placed under the privacy umbrella. With the aforementioned

judgement, the Delhi High Court has set the ball rolling; now it is up to the legislature to

uphold the promise against genetic discrimination by enacting a rule.