Why India needs a Genomic Protection Act now
The recent implosion of 23andMe, a once-celebrated pioneer of direct-to-consumer genetic testing, should not merely be viewed as a Silicon Valley story gone wrong. It is a powerful cautionary tale for India, which now stands on the threshold of a genomic revolution.As someone deeply involved in precision medicine and longevity care, it is time for India to go beyond fragmented data protection frameworks and enact a dedicated Genomic Protection Act, one that prioritises clinical oversight, ethical stewardship, and individual rights.advertisementIndia is a genetic mosaic. With more than 4,000 distinct ethno-linguistic communities, centuries of endogamy, and a vast reservoir of rare variants, our population represents both a treasure trove for research and a potential minefield for exploitation. The collapse of 23andMe was not simply about a business model failing. It was about trust being eroded.
It showed what happens when data privacy becomes an afterthought and genetic results are served without medical interpretation, leading not to empowerment, but anxiety. We must not repeat these mistakes.Genomic data is not like browsing history. It cannot be deleted or changed. It holds information not just about the individual, but about their children, communities, and future generations.Once it's leaked or misused, the consequences are irreversible. In India, where public awareness about data rights is still evolving and health literacy varies greatly, the risks of commodifying DNA are enormous.advertisementYes, the Digital Personal Data Protection Act is a step forward. But it lacks the nuance and granularity required to govern genomic data, which is fundamentally different from other forms of personal information.We urgently need legislation that defines who owns your genetic data, sets limits on how it can be shared, and ensures consent that is layered and ongoing, not broad and one-time.FOUR PILLARS OF A GENOMIC PROTECTION ACTClinician-Led Testing: Genomic insights must be contextualised within clinical frameworks. Raw data leads to confusion; interpreted data leads to care. Imagine a longevity screen that integrates a patient's APOE status with cholesterol levels, cognitive assessments, and family history—offering a prevention roadmap, not just a risk percentage. That's precision medicine.Ethical Data Stewardship: Any storage, transfer, or analysis of genomic data should be governed by ethical boards and protected under encrypted, India-based servers. Data sanctity must not be compromised for commercial gains.Granular Consent and Opt-Out Rights: Individuals should be able to choose what portions of their data are used, for how long, and by whom. Consent should be revocable. An individual must have the right to know who accessed their genome and for what purpose.Population-Scale Governance: As India moves into population genomics and public-private collaborations, our policies must ensure that innovation does not outpace regulation. Genomic information must never become a tool for discrimination, be it in insurance, employment, or marriage.advertisementIndia has the opportunity to construct a gold-standard genomic ecosystem, one that learns from global missteps and roots itself in trust, transparency, and scientific integrity. The collapse of 23andMe is not the end of consumer genomics. It is a wake-up call. We must lead with care, not just curiosity.It's not a question of whether India will embrace genomics. The question is whether we will do it responsibly. A Genomic Protection Act is no longer optional. It is essential, for science, for ethics, and for the future of every Indian genome.(Disclaimer: This is an authored article. The views and opinions expressed by the doctors are their independent professional judgement, and we do not take any responsibility for the accuracy of their views. This should not be considered as a substitute for physician's advice.)- Ends
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