Emerging, challenges and modernization path of gene privacy in China: from personal privacy to group privacy

Genetic data, which contains human life codes, is the most fundamental privacy of individuals and is therefore protected by the right to privacy. However, given the diverse subjects involved in genetic data, traditional individualistic privacy regulations face challenges in practise, posing a global dilemma on effective gene privacy protection. Over the past three decades, China has seen rapid development in the concepts of privacy and gene privacy. Genetic data is inherently classified as private data, entitled to protection under CCC and CPIPL. China adopts an informed consent model rooted in individualism for gene privacy protection, yet faces triple dilemmas in practice, including inadequate protection for individuals, insufficient safeguards for societal interests, and benefit-sharing imbalances. Going forward, China should first shift its governance philosophy from individualism to group dimension; second, further restrict individuals' self-determination over genetic data; and finally, give full play to its existing organizational structure, public interest litigation system, and the role of groups in safeguarding benefit-sharing.