1. HOW CAN I PARTICIPATE IN THE NATIONAL PRECISION MEDICINE PROGRAMME?
We are working with the SG100K study to bring participants into the precision medicine programme. SG100K is a state-of-the-art population health research study, established as a collaboration between leading researchers at Singapore’s National Universities and hospitals. SG100K is coordinated by Professor John Chambers at LKC Medicine, NTU. Participation in SG100K involves completing a consent form and providing blood for genomic sequencing and biological samples for a range of other analyses. The team will also ask you for your permission to access your health records and other questions about your health and lifestyle to help us understand how these factors influence Singaporeans’ health.
For more information, please visit the SG100K website here.
2. WHAT IS THE PURPOSE OF GENOMIC SEQUENCING?
Genomic sequencing will produce a map of each person’s genes and the differences in these genes from person to person. These differences, which are called genetic variants, influence the physical characteristics of each person, how they respond to food, medications and their environment, as well as their risk of developing disease. Having these genetic variant maps of many people in Singapore will help researchers to study how we develop diseases and to design more targeted treatments for these diseases.
3. HOW CAN I GET PRESCRIBED PRECISION MEDICINE?
Precision medicine is not available over the counter. Rather, precision medicine is an approach that uses results from genetic tests to help doctors put together a plan for care that usually involves very specific recommendations. In some cases, precision medicine can help make a more accurate diagnosis and improve treatment. In other cases, it can help people make decisions about healthy habits, earlier screening tests and other steps towards prevention if they are at risk for a particular disease.
Currently, precision medicine approaches such as genetic testing are being used to diagnose some cancers and rare diseases. Research is ongoing to expand the types of diseases that can benefit from precision medicine approaches in the future. To achieve this, we have planned several pilot studies to investigate the large scale implementation of precision medicine in clinics and hospitals, as well as to evaluate its health and economic benefits.
4. HOW WILL THE DATA THAT I CONTRIBUTE BE USED?
Scientists and doctors will use the data to increase their understanding of how diseases develop and why some Singaporeans develop a disease, while others do not. Based on this understanding, scientists and doctors will be able to develop more targeted preventions and treatments for diseases, which may be more effective than current therapies and will benefit Singaporeans in the future.
5. HOW WILL THE PROGRAMME KEEP THE DATA THAT I CONTRIBUTE SECURE AND PROTECT MY PRIVACY?
Security and privacy are of utmost importance and will be strictly managed. Firstly, any personal information that identifies you, such as name, NRIC and address, will be removed from the data that you contribute. Secondly, this de-identified data will be accessed in a safe and secure manner by researchers who will use it for research that aligns with the national objective to deliver better healthcare outcomes for Singaporeans. These researchers will not know that the data they access is associated with you.
6. WILL INSURANCE COMPANIES OR EMPLOYERS BE ABLE TO USE THE DATA (IF THEY OBTAINED IT SOMEHOW) TO DISCRIMINATE AGAINST ME?
No, insurance companies or employers cannot use the data contributed by you to discriminate against you. Insurance companies need to abide by the relevant laws that prohibit unfair discrimination. Employers have to adhere to the Tripartite Guidelines on Fair Employment Practices (TGFEP), which prohibits any form of discrimination based on factors that are not related to merit, such as skills, experience or ability to perform the job.
The Ministry of Health (MOH) and the Life Insurance Association (LIA) have developed the ‘Moratorium on Genetic Testing and Insurance’ to support Precision Medicine (PM) in Singapore. The Moratorium aims to prevent individuals from being deterred to undergo clinical genetic tests for any medical indications and/or participating in PM research due to concerns about insurability. With effect from 27 October 2021, life insurers in Singapore are not allowed to use predictive genetic test results in assessing or deciding the outcomes of insurance applications, unless certain criteria are satisfied.
For more information, please head over to MOH’s announcement – Moratorium on Genetic Testing & Insurance.
For enquiries, please write to eLIS@moh.gov.sg
7. DO OTHER COUNTRIES HAVE PRECISION MEDICINE PROGRAMMES? IF SO, HOW IS SINGAPORE’S DIFFERENT?
Several countries including the U.S., Canada, U.K., China and Japan, have started national precision medicine programmes and most of these are in their early days. Based on initial findings, it is becoming increasingly obvious there are diseases more common in Asians than in Caucasians and this is largely attributed to the genetic differences between races, yet the Asian genetic makeup is not extensively studied and poorly understood. This “Asian genetic diversity gap” has hindered efforts to discover disease-associated genes that impact Asians.
The Singapore precision medicine programme aims to help fill this “genetic diversity gap” and facilitate the discovery of more effective preventions and treatments for Asian populations.
8. WHAT’S COMING UP NEXT FOR THE PRECISION MEDICINE PROGRAMME?
The programme spans 10 years. We have completed the first phase, in which we studied the genomes of 10,000 Singaporeans and identified common genetic variants (>1%) that occur in the Singaporean population. In the next few years, we hope to collect data from 100,000 Singaporeans to reveal more uniquely Singaporean insights into the roles of genetic variants in disease. Another important focus will be testing precision medicine pilot programmes in real hospital settings. In the long run, we also hope to train future generations of skilled workers in the high-growth genomics and big data industries, who will help to propel Singapore to the forefront of precision medicine worldwide.