Strengthening legal safeguards against genetic discrimination: review and recommendations for Malaysia.

Abstract

The increased pace of genomic research and precision medicine on a global scale has heightened the risk of genetic discrimination and underscored the critical importance of genetic data protection. Leading jurisdictions, including the U.S., the European Union, Japan, China and Hong Kong among others, have enacted laws as solution to these issues. These regulations explicitly outlaw the misuse of genetic information in insurance, employment, or health-related domains in addition to robust data protection measures, which include defined opt-in requirements and proper governance by auditors and ethics committees. Malaysia, however, is yet to have legal safeguards specifically against genetic discrimination, currently relying on general data protection laws that does not explicitly classify genetic information as sensitive or protected data, thus making it vulnerable to discriminatory misuse. This gap has implications towards the general population, especially with the rise of genetic testing in healthcare and large-scale genomics studies. This review examines existing international legal guidelines and policy infrastructure relevant to genetic discrimination and genetic data governance, through which key mechanisms of anti-discrimination legislation, data privacy schemes, and bioethics criteria are identified. The consistently repeated tenets such as explicit prohibitions on discriminatory uses of genetic data, expanded safeguards and strong supervisory mechanisms, when applied to the Malaysian context, serve as a legislative blueprint for the country to establish its own framework in preventing genetic discrimination, addressing current protection gaps, and governing genetic data in the spheres of research, insurance, employment, and commercialisation.