Have you ever wondered about what your genetic makeup would reveal about you? Doing so might allow you to find out more about your ancestry, health issues, and the chances of passing on a health condition to your children.
Consumer genetic tests to predict health issues have grown in popularity in Singapore despite warnings from experts, including the Ministry of Health (MOH), that the accuracy of results may not be scientifically backed, as well as over privacy concerns.
In Singapore, genetic testing is a relatively new area of science that the law is still in the process of regulating. In October 2024, Singapore’s Health Minister announced that the MOH is working on new legislation to govern the use of genetic and genomic test data, with the aim of addressing potential undesirable outcomes such as discriminatory use of genetic information in employment and insurance.
In this article, we will:
- Explain what is genetic testing and what kinds of genetic testing are there
- Summarise how genetic testing is currently regulated in Singapore
- Explore potential legal and privacy issues, such as whether insurance companies and employers can use your genetic information to discriminate against you
- Discuss whether genetic testing can be performed before a baby’s birth
What is Genetic Testing?
Genetic testing is the analysis of a person’s genetic material. Under Singapore law, genetic testing is currently categorised into ‘clinical genetic testing’ and ‘non-clinical genetic testing’ based on the nature of the genetic testing in question.
Clinical genetic testing
Clinical genetic testing is generally used to predict, diagnose or guide treatment of medical conditions. A genetic test is considered a clinical genetic test if:
- It is used for any one of the following purposes:
- To confirm a genetic disease in a symptomatic person (i.e. diagnostic genetic testing)
- To predict the risk of passing on a genetic disease to offspring
- To predict a future risk of genetic disease in people who currently do not have signs of a genetic disorder (i.e. predictive testing)
- To predict a person’s drug response
- To predict a person’s risk of developing a disease or condition (whether inherited or not inherited)
- Any purposes that purport to assess, diagnose, prevent, alleviate, or treat a medical condition or disorder
- Or, if the test gives information on issues similar to medical conditions or induces consumers to seek further medical solutions.
Examples of clinical genetic tests include those to identify genetic diseases such as breast cancer and Huntington’s disease in patients.
Clinical testing can only be performed by doctors and clinics licensed under the Healthcare Services Act (HCSA).
As seen above, clinical genetic testing can be further sub-categorised as a diagnostic or predictive genetic test. A diagnostic genetic test confirms or rules out a diagnosis based on existing symptoms, whereas predictive genetic tests predict a future risk of disease in people who currently do not have signs of a genetic disorder. This is discussed in further detail in the section on insurance underwriting below.
Non-clinical genetic testing
On the other hand, non-clinical genetic testing is used for general well-being and recreational purposes, such as finding out more about your ancestry and personality. Most of these tests are Direct-to-Consumer (DTC) tests, which are sold online directly from local and overseas stores to consumers without a doctor involved. They usually require a consumer to send a DNA sample (e.g. a saliva sample) to a company for analysis and the company will subsequently send a test report back to the customer.
Despite the ease of conducting DTC tests, there are some risks to be wary of. For example, DTC test results are usually not explained with proper counselling by a doctor. Hence, the MOH strongly advises consumers to exercise caution when using such genetic tests. Additionally, genetic data from DTC tests may be sold to third parties for marketing, service evaluation or research purposes. Do note that DTC tests cannot be used to predict, diagnose or guide the treatment of medical conditions in Singapore, so they should not be treated as medical advice without further consultation with a doctor.
Examples of DTC tests currently available in Singapore include CircleDNA and Genetrack Singapore.
What is the Current Regulatory/Legislative Framework For Genetic Testing in Singapore?
The applicable regulatory framework depends on the category of genetic testing.
Clinical genetic testing is a licensable healthcare service under the HCSA. If a person provides clinical genetic testing without a licence under the HCSA, they may face a fine of up to $100,000 and/or imprisonment of up to 2 years for their first offence, and a fine of up to $200,000 and/or imprisonment of up to 2 years for subsequent offences.
In 2018, the MOH issued a Code of Practice setting out the requirements for the provision of clinical genetic testing by healthcare institutions, licensees and doctors. This Code of Practice is currently under review and will be subsequently implemented under the HCSA.
Under the Code of Practice, clinical genetic tests are categorised into three levels based on the following:
- Impact of the tests on the patient and their family
- Risk of inappropriate ordering of genetic tests
- Predisposition to wrong interpretation of test results.
| Level of genetic test and examples | Summary of standards to be met |
Level 1 genetic tests include:
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Level 2 genetic tests include:
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| Level 3 genetic tests include genetic tests that are not categorised as level 1 and level 2 genetic tests, such as tests which may identify a hereditary cancer syndrome |
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In May 2021, the MOH published a guide setting out good practices for DTC test providers to safeguard consumers’ safety, welfare and privacy. The MOH stated that DTC test providers should:
- Ensure that any advertisement and test report does not carry any medical information and medical advice
- Include disclaimers that the test results should not be regarded as medical advice, provide information on how to interpret the test results, and inform consumers of all risks associated with testing
- Provide an advisory note to direct consumers to seek an appropriate medical professional on the interpretation of raw genetic information
- Inform consumers of the strength of scientific evidence of the tests
- Put in place robust data security measures to prevent the unauthorised access of any databases containing personal data
More information on the best practices for DTC test providers can be found here.
Providers of genetic tests are also required to comply with the Health Products Act as it may be classified as a “medical device” or “therapeutic device” and thus considered a health product. This means that genetic tests are subject to regulations such as those on manufacturing, importation, wholesaling supply, and advertising themselves as health products.
The Human Biomedical Research Act also governs genetic tests for the purposes of biomedical research. This is to ensure the health, welfare, and safety of research participants.
Genetic research could be considered biomedical research if it is used to study the prevention of any disease and uses individually-identifiable health information. The research would then need to be conducted under the supervision and control of a research institution which has to formulate appropriate standards, policies and procedures to supervise the conduct of the research. Appropriate consent must also be obtained from the research subject in writing, in the presence of a witness, and after all relevant information has been provided to the research subject.
What are Some of the Potential Legal Issues Surrounding the Use of Genetic Testing?
You may be concerned about the confidentiality of your genetic data after testing. After all, genetic testing is the study of a person’s DNA, RNA, genes and chromosomes, and its results will likely include intimate information about your genetic make-up. Such information could be sold to third parties, such as marketing groups, to target you with specialised advertising without your realisation. This info can also be used by insurance companies to determine if you have a higher risk of developing a health condition and increasing your insurance premium, and by employers who may discriminate against prospective employees who have a higher predisposition to certain genetic diseases.
What are some privacy concerns surrounding genetic testing?
In Singapore, the Personal Data Protection Act (PDPA) governs the collection, use, and disclosure of personal data. Genetic data would be classified as personal data under the PDPA because genetic data is so unique to each individual that it can be used to identify you.
Since genetic data is considered personal data under the PDPA, this means that your consent needs to have been given for an organisation to collect, use, or disclose your genetic data – but only for purposes which you have given your consent to. For example, if you only agreed to the collection of your genetic data for research purposes within the organisation, they cannot later sell your genetic data to third parties.
However, do keep in mind that organisations may acquire your consent to such use of your genetic data by getting you to agree to the terms and conditions of their genetic test. Do ensure that you read through the terms and conditions clearly before you undergo any genetic test.
If a company does not comply with the PDPA, the Personal Data Protection Commissioner may impose penalties on the organisation, direct the organisation to stop collecting, using or disclosing personal data in contravention of the PDPA, or direct the organisation to destroy personal data collected in contravention of the PDPA.
Additionally, if the DTC test is performed by a foreign company, the issue of whether the PDPA has jurisdiction over the foreign company arises. The PDPA does not explicitly state whether it governs overseas jurisdictions, but it does state that before transferring an individual’s personal data out of Singapore, the organisation must take appropriate steps to ensure that the personal data will be afforded a standard of protection comparable to the PDPA in that jurisdiction.
You may find out more information on what organisations can do with your personal data within the purview of the PDPA in our other article.
How might genetic data affect insurance underwriting?
The way insurance companies price their plans depends on risk – the higher the risk of a negative event happening, the higher the premium. If your genetic test results show that you have an increased risk of a genetic disease, your insurance premium may increase or you may even be excluded from being insured for a particular disease.
For the purposes of underwriting an insurance product, insurers may require an individual to disclose or use predictive genetic testing. This might deter people from undergoing genetic testing for medical issues because of concerns that their insurance application might be affected. Singapore’s Health Minister stated that this “undermines the whole purpose of insurance” as it is meant to protect people from bad luck, which should include being born with problematic genes.
To prevent people from being deterred from genetic testing, the MOH and Life Insurance Association (LIA) have developed the Moratorium on Genetic Testing and Insurance (the Moratorium). The Moratorium prohibits insurance companies from using genetic test results unless certain criteria are satisfied. All members of the LIA have to comply with the Moratorium in order to remain a member.
In summary, the Moratorium prevents life insurers from:
- Asking an applicant to take any kind of genetic test as part of the applicant’s insurance application
- Asking an applicant to disclose and use the result of any predictive genetic test for insurance underwriting if the genetic test was taken for biomedical research
- Asking an applicant or medical provider to disclose and use the result of any predictive genetic test for insurance underwriting if the insurance or test is any one of the following:
- Health insurance, including Integrated Shield plans
- General insurance
- Group insurance
- DTC genetic test
- Test done on another person
- Test taken after the insurance coverage has started (unless the applicant had agreed to take the test before the insurance coverage started)
- Any other insurance not explicitly listed by the Moratorium
Under the Moratorium, life insurers are allowed to:
- Ask an applicant to disclose and use the result of a predictive genetic test for assessing/deciding the outcome of their insurance application if all of these conditions are met:
- The insurance the applicant is applying for is either life, total permanent disability, long-term care, critical illness and disability income insurance
- The payout of the insurance applied for exceeds the financial limits in Table 1 of the Moratorium
- The applicant has taken a predictive genetic test from the list of approved predictive genetic tests stated in the Moratorium for medical conditions such as Huntington’s disease and breast cancer
- Ask an applicant to disclose and use the result of any diagnostic genetic test done for clinical care for assessing/deciding the outcome of their insurance application
- Use the result of any predictive genetic test if the result is favourable to the applicant
How might genetic data affect employers’ decisions?
With the growing popularity of genetic testing, employers could potentially use genetic test results to filter out job applicants who might be at risk of certain genetic diseases. This might lead to discriminatory hiring practices against individuals who have a chance of genetic diseases such as Alzheimer’s disease or types of cancer despite the fact that they are otherwise healthy and meet the competencies and qualifications required for the job.
If analysing one’s genetic data before hiring a job applicant becomes a common practice, this may even lead to employers requesting genetic testing just to sift out the job applicants who may have a propensity for desirable genetic characteristics. These include the ability to perform well with little sleep and imperviousness towards heart disease.
In other countries around the world, laws prohibiting discrimination against job applicants due to their genetic data have come into effect. For example, in the United States, the Genetic Information Nondiscrimination Act was passed in 2008, which prevents employers from using genetic information to discriminate against a job applicant.
Singapore prohibits discrimination against employees due to age, nationality, set, marital status, pregnancy status, caregiving responsibilities, race, religion, language, disability, or mental health conditions. Singapore currently does not yet have any explicit laws against such genetic discrimination by employers. Please read our other article for more information on Singapore’s workplace discrimination laws.
Can Genetic Testing be Performed Before a Baby’s Birth?
Hospitals currently offer many genetic tests before a baby is born to either diagnose a genetic defect in a foetus or to screen the foetus for the risk of developing a genetic defect. This allows the mother to make an informed decision with respect to continuing with or terminating the pregnancy. Termination of pregnancy is legally permitted in Singapore for up to 24 weeks.
Even prior to implantation, certain kinds of genetic testing can also be performed on embryos in the case of assisted reproduction treatment such as in-vitro fertilisation. Pre-implantation, embryos can be tested for monogenic/single gene defects (which can cause cystic fibrosis, hemochromatosis, Tay-Sachs disease, and sickle cell anaemia) and chromosomal structural rearrangements (which can cause stillbirths, malformations, and intellectual disability).
Hospitals that wish to offer pre-implantation genetic testing require approval from the MOH to offer such services. A list of current approved providers for preimplantation genetic testing can be found on the MOH website.
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With the rise in popularity of DTC genetic tests, MOH has issued many warnings about the reliability and accuracy of such tests. They also have released an extensive guide on good practices that DTC test sellers should abide by. The government is also taking steps to address discriminatory use of genetic test results regarding insurance underwriting and employment.
If you would like to find out more about any legal issue related to genetic testing, you should consult a lawyer. For example, if you have concerns about your genetic data from a genetic test potentially being disclosed to third parties, you may contact a data privacy lawyer for advice.
You can consider seeking advice from an employment lawyer, if you have faced discriminatory employment practices.
Finally, if you believe that your genetic test results have been used against you, you may want to consult a civil litigation lawyer for further guidance and advice.
