GENETICS: DISCRIMINATION AT THE CELLULAR LEVEL?

The interview was not going well.

Despite assurances – by Bernama and Cancer Research Malaysia (CRMY) genetic counsellors who arranged the Zoom interview – that her privacy was protected, Anita (not her real name) refused to believe any of the promises. No amount of oaths and vows would convince her that her real name, any recording of her voice or identifiable details will be included in this article.

So far, the breast cancer patient has refused to divulge her age range or the stage of her cancer when first diagnosed in 1998. Every admission was hard won.

But behind her suspicion and paranoia, lies a very inconvenient truth. 

In 2016, Anita and her sister both found out they had the BRCA2 gene mutation that dramatically increased their chance of developing breast and ovarian cancer. And while Anita says she is relieved to discover the truth so she can minimise her risks, knowing it has not set her free. 

“I am not protected by the laws in this country, so I will not expose this information to the public because I don't have any protection. I can be discriminated against and so can my family. (T)here are no laws in this country to protect me,” she told Bernama irritably. 

pic-4

This leaves her and her family and others like her in limbo. Even as precision medicine – which includes collecting and analysing genetic information of patients in order to plan and provide better treatment – gains traction in Malaysia, many fear sharing their genetic information. Some have resisted testing, unsure how their faulty genes may affect their insurance coverage, employment prospects or even their marital chances.

While other countries that practice genomic medicine have safeguards in place to prevent genetic discrimination – the United States, for example, has the Genetic Information Nondiscrimination Act – Malaysia has none. It doesn’t even have clear protections for the disabled as many disabilities are genetic in nature. 

“I just feel the anger that we have a discrimination. It doesn't worry me, but it angers me. Why are we not protected?” Anita asked.

PRECISION MEDICINE

The trend towards using DNA to predict, prevent and treat diseases is gaining steam worldwide with developed countries, such as the United Kingdom in 2012 and the US in 2013, sequencing the genetic makeup of their peoples. At a time when the cost of medical treatments and health insurance premiums are skyrocketing, proponents say genomic medicine will help channel funds to those who need them the most.

Following their example, Malaysia launched the MyGenom Project in September 2024, which aims to collect DNA from 10,000 Malaysians to better understand and predict the prevalence and incidence of diseases like diabetes, cancer and other genetic diseases. As of April 2, 2025, some 1,832 Malaysians have given genetic samples to the project.

pic-5

Prof Datuk Dr A Rahman A Jamal, founding director of Universiti Kebangsaan Malaysia Medical Molecular Biology Institute, wrote in a 2021 editorial in the Malaysian Journal of Medical Sciences that adopting precision medicine was a strategic move for Malaysia.

“The targeted outcomes include better diagnosis, improved decision-making processes, more effective treatment, reduced wastage through avoiding unnecessary diagnostic testing and therapies, and also better disease prevention strategies,” he wrote.

He also wrote that in order to utilise precision medicine, Malaysia needed five key components, including a strong national policy, a nationwide genome sequencing project, an electronic medical record system, a sustainable funding system for tests and treatments and an ecosystem to support precision medicine.

He added there should be laws to prevent genetic discrimination “to ensure those individuals that have been identified to have variants related to diseases are not deprived of their right to medical insurance and employment”.

So far, all are being done or are in the process of implementation except for the laws

GAME OF SECRETS

Sitting in a leather chair at the Enzyme Therapy Daycare Unit at Hospital Kuala Lumpur (HKL) here is 19-year-old David (not his real name). Painfully thin, clad in shorts and a T-shirt with an IV needle taped to his left arm, he is receiving his biweekly dose of a life-saving enzyme that helps remove excess glycogen from his organs.

David has Pompe disease, a rare inherited genetic disorder, characterised by the inability to produce an enzyme to break down glycogen into glucose for energy. Excess glycogen weakens the muscles and heart.

pic-6

“He’s supposed to get this weekly but the government has limited funds so we’ve to get it twice a month. But I think the doctor increased the dose (to compensate),” his father, who asked to be identified as Don, told Bernama quietly. His eyes anxiously scour his son’s face for any sign of discomfort.

Although the family has medical insurance, Don, 56, has not informed the insurer of David’s diagnosis in 2022 or sent in a claim for treatment. He is worried that David may be dropped from the insurance plan or he (Don) would have to pay higher premiums.

As a result, the family has paid for almost everything Pompe-related out of pocket. It also explains why they depend on the public healthcare system for David’s enzyme treatment. 

There is no law preventing insurance companies from discriminating against potential customers based on age and weight or denying claims after the policy is in effect, often by using the pre-existing condition clause. Most health insurance policies have a prohibition against covering “pre-existing disease”.  

“The majority of insurance companies, the moment (they discover) it's congenital or genetic, automatically your insurance (claim) is already not paid,” said Dr Kavitha Rethanavalan, consultant geneticist at HKL.

pic-2

Without insurance, few can afford to go for the necessary treatment at private hospitals, which provide quicker service compared to public hospitals. Preventative measures like prophylactic surgeries for patients with genetic cancers also rarely take priority at public hospitals unless the patient has already developed cancer. While medical care in public health institutions is provided free or at cost, the pace can be glacial. 

As such, people like Don are willing to take their chances if it means keeping their policies at lower premiums. As doctors are bound by patient confidentiality and health medical information is confidential under the Personal Data Protection Act 2010, insurance companies cannot seek diagnoses and treatments.

Doctors have their ways of dealing with insurance companies. Many recommend that patients pay for their own treatments or surgeries because the pre-existing condition clause has caused problems for their patients in getting necessary treatment, including those who develop diseases that are not pre-existing.

Paying for treatments out of pocket and not telling insurance companies of certain diagnoses or genetic test results may work in the short term but it is not without obstacles.

“In insurance, the onus is on (you) telling, right? Telling the information. If you don't disclose, (they won’t know). But if anything happens … for example, if you want to do surgery on a healthy organ, they might ask why? Right? Because you did this (genetic) test, right?” said Tiara Hassan, deputy head of CRMY's Genetic Counselling Unit and senior genetic counsellor at Genetix.

Insurance companies may then ask patients to explain why they need certain treatments. While clients can lie, medical law and ethics expert Dr Kuek Chee Ying said that would be a violation of the contract that both parties signed at the beginning. 

“I think that the insurance contract itself, I mean people have to actually disclose honestly. So if any dishonesty was found by one party, I am not sure (what will happen),” she said. 

pic-3

Often, insurance companies prefer to increase premiums after finding out their client has a pre-existing condition, rather than cancel policies. In the end, the result is the same with some customers cancelling their policies because the new rates are too prohibitive to continue.

Bernama contacted a health insurance association and the Malaysian Medical Association for comment but did not get any response.

PROTECTION EFFORTS

Other than the Personal Data Protection Act, other existing laws to protect people against genetic discrimination lie within a bunch of laws, including the Persons With Disabilities Act 2008 and the Employment Act (1955). While the laws state that disabled people have equal access to services, education and employment, the provisions are vague and do not detail protections. 

Most congenital disabilities are genetic even if they are not inherited, such as Down’s Syndrome which is characterised by an extra chromosome. Neurodivergent conditions, including autism, are also recognised as a congenital disability.

Despite ratifying the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2010, Bar Council Ad Hoc Committee on Persons with Disabilities co-chairman Anit Kaur Randhawa said Malaysia has not harmonised its persons with disability (PwD) laws with the rights entailed in the convention.

“So, basically, like access to justice, definitions of discrimination and what do you do, where do you go if you're discriminated against? And then what are your remedies? Right now our Persons With Disabilities Act is a rights-based legislation, which was passed before we ratified CRPD,” she said, adding that Malaysia only confirmed anti-discrimination protections for PwD recently.

She cited the case of an autistic counsellor who sued the Public Services Commission and the government for denying him the chance to apply for a permanent position in the Ministry of Health (MoH). The counsellor, who has worked with MoH since 2020, had been interviewed previously for a permanent position but did not get it. The second time there was an opening, he applied again but was denied the chance to go for an interview because he allegedly did not meet the qualifications. 

By then he had been diagnosed with autism and had received an ‘OKU’ card, an identification card for PwD. He then sued the government in 2024.

pic-7

The Bar Council filed an amicus curiae supporting the counsellor, saying the CRPD taken with Article 8 (1) of the Federal Constitution, which declared “All persons are equal before the law and entitled to the equal protection of the law”, meant his rights had been violated. The court agreed in January this year.

“So, if that happened to him, I'm very concerned that if you do genetic testing, or you have an OKU card, there's job seekers discrimination (too). That means you don't even get a foot through the door,” Anit told Bernama.

Despite the landmark decision, the protections would only apply to people who are willing to go to court. As it is, the anti-discrimination protections have not been codified and unlikely to happen anytime soon.

As such, the Bar Council and its allies are fighting for an amendment to the Federal Constitution to include the word “disabled” in Article 8 (2), which prohibits discrimination against “citizens on the ground only of religion, race, descent or place of birth in any law or in the appointment to any office or employment …” 

“So if the Federal Constitution mentions disability, then any other Act that does not uphold a disabled (person’s) right or discriminates against a disabled (person) will have to be automatically shot down because it's inconsistent with the supreme law of the land,” Anit said.