Navigating the Genetic Labyrinth: Reconciling Individual Genetic Autonomy with Collective Health Imperatives in International Policy

Abstract

Genetic information serves as a crucial resource for scientific inquiry, clinical diagnostics, and establishing personal identity. Yet, this same data harbours potential threats to individual and collective privacy rights, with the capacity to disclose intimate details susceptible to discriminatory or exploitative misuse. It is, thus, imperative to scrutinise the role of international law in safeguarding genetic data privacy and curtailing discrimination predicated on genetic profiles. This article delves into the evolution of privacy rights concerning genetic data, as demarcated by international legal frameworks. It examines the delicate balance between genetic data confidentiality and anti-discrimination efforts, questioning whether the pursuit of communal benefits is compromised by rigorous privacy protections. The discourse posits that international legal tenets can inform the formulation of privacy measures that reconcile the communal imperative for technological advancement with the privacy entitlements of individuals and kinship groups. Furthermore, it advocates for the adoption of optimal practices to fortify genetic data privacy and impede genetic-based discrimination within the ambit of international law. These practices may encompass the implementation of stringent data anonymisation protocols and comprehensive informed consent processes at the national level.