In the modern age of medical advancements, biobanks have emerged as invaluable repositories of genetic information, fuelling groundbreaking research and personalized medicine. However, as genetic data becomes more accessible, concerns over privacy and ethical safeguards grow increasingly pressing.
Biobanks store biological samples—such as blood, tissue, and DNA—and relatedhealth data, allowing researchers to study genetic markers, disease progression, and potential treatments. From national biorepositories to specialized research initiatives, these genetic databases promise revolutionary insights into human health. Yet, for all their benefits, biobanks pose significant risks to personal privacy. Genetic information is deeply personal, uniquely identifying individuals in ways fingerprints cannot. While anonymization techniques exist, they are not foolproof, leaving sensitive data vulnerable to breaches or unauthorized access.
India’s Digital Personal Data Protection Act (DPDPA), 2023 marks a significant step in data privacy, but how does it compare to global genetic privacy laws? While frameworks like the EU’s GDPR and U.S. GINA explicitly address genetic data, India’s approach remains broader, leaving room for interpretation.
GDPR (Europe): Defines genetic data as sensitive personal information, requiring explicit consent for collection and processing.
GINA (U.S.): Focuses on preventing genetic discrimination in employment and health insurance
DPDPA (India): Does not explicitly classify genetic data as sensitive, relying on general personal data protections.
India’s DPDPA Section 17(2)(b) allows data processing for research without stringent safeguards, unlike GDPR’s strict ethical oversight. This raises concerns about genetic profiling and potential misuse.
While India’s DPDPA is a step forward, its lack of explicit genetic data protections makes it weaker than GDPR and GINA. As genetic research expands, India may need dedicated genetic privacy laws to prevent misuse and ensure ethical data handling