Kuala Lumpur: Despite assurances from Bernama and Cancer Research Malaysia (CRMY) genetic counsellors about privacy protections, Anita (not her real name) remains skeptical. A breast cancer patient, Anita’s reluctance to share personal details, such as her age or cancer stage, stems from the fear of discrimination. This concern is rooted in the discovery that she and her sister carry the BRCA2 gene mutation, significantly increasing their cancer risk.
According to BERNAMA News Agency, Anita’s fears are not unfounded. In Malaysia, there are no legal protections against genetic discrimination, leaving individuals like Anita vulnerable. While countries such as the United States have enacted the Genetic Information Nondiscrimination Act, Malaysia lacks similar safeguards. This absence of legal protection raises concerns among those involved in genomic medicine, as they fear repercussions in insurance, employment, and personal life.
The global trend toward precision medicine, which involves using genetic information to enhance treatment, is gaining momentum. Developed nations like the UK and the US have initiated genome sequencing projects to predict and treat diseases more effectively. Following their lead, Malaysia introduced the MyGenom Project in 2024, aiming to collect DNA samples from 10,000 Malaysians. The project’s goals include understanding diseases like diabetes and cancer, but only 1,832 samples have been collected as of April 2025.
Prof Datuk Dr A Rahman A Jamal, from Universiti Kebangsaan Malaysia Medical Molecular Biology Institute, emphasized the strategic importance of precision medicine in Malaysia. He noted the need for a robust national policy, a genome sequencing project, an electronic medical record system, sustainable funding, and an ecosystem supporting precision medicine. However, the legal framework to prevent genetic discrimination remains a critical missing component.
In another case, David, a 19-year-old with Pompe disease, highlights the practical challenges faced by families dealing with genetic disorders. His father, Don, has refrained from informing their insurer about David’s diagnosis, fearing exclusion from the insurance plan or increased premiums. The lack of legal protections allows insurance companies to deny claims based on pre-existing conditions, putting families under financial strain.
Health insurance in Malaysia often excludes congenital or genetic conditions, as explained by Dr Kavitha Rethanavalan, a consultant geneticist at Hospital Kuala Lumpur. Patients and families are forced to navigate a complex system where disclosure can lead to financial hardship. Despite confidentiality provisions under the Personal Data Protection Act 2010, patients face dilemmas over whether to disclose genetic information to insurers.
Efforts to protect individuals against genetic discrimination in Malaysia are limited. Existing laws, such as the Persons With Disabilities Act 2008 and the Employment Act 1955, offer vague protections. Anit Kaur Randhawa from the Bar Council highlighted the need for harmonizing Malaysia’s laws with the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The recent court case involving an autistic counsellor underscores the need for clearer anti-discrimination laws.
The Bar Council is advocating for an amendment to the Federal Constitution to include ‘disabled’ in Article 8 (2), which would strengthen protections against discrimination. Such a change would ensure that any act discriminating against disabled individuals would be invalidated. Until these changes occur, individuals in Malaysia remain vulnerable to genetic discrimination, despite the potential benefits of precision medicine.