Reasons for Low Uptake by Couples for Genetic Screening

Dr Choo Pei Ling asked the Coordinating Minister for Social Policies and Minister for Health in view of the target of 40,000 married couples between 2024 and 2027 against 674 screened at end 2025 under the regarding the PaREnthood genetic DIsease Carrier Test (PREDICT) Programme (a) what are the reasons for the low screening rate; and (b) whether the Ministry will consider including couples planning to get married, like those already on the HDB Fiancé/Fiancée Scheme.

The Parenthood Genetic Disease Carrier Test (PREDICT) programme is a pilot project to enhance prenatal screening of carriers of recessive genetic disorders, such as spinal muscular atrophy and Pompe disease. While it is offered to almost all couples that KK Women's and Children's Hospital (KKH) is attending to, fewer than 1,300 couples showed interest and wish to participate in the pilot programme.

These couples were then invited to undergo genetic counselling so that they understand how to interpret the results and potential implications. Many couples did not complete the mandatory genetic counselling or decide not to proceed after the genetic counselling. So, today, about 800 couples have gone through the tests. The earlier target set was obviously too ambitious, and we will review both the target and the pilot with KKH and Temasek Foundation, which is funding the programme.

Thank you, Mr Speaker, and I thank the Minister for the reply. I have three supplementary questions.

The first one, beyond awareness, what does the Ministry see as the key reasons why couples are not taking up PREDICT?

Second, whether the Ministry has considered if earlier touchpoints, such as at the point of the Registry of Marriage or Registry of Muslim Marriages applications may be more effective in reaching couples? And if not, whether this is something the Ministry would consider?

Third, whether the Ministry has considered what role incentives could play in improving uptake?

Okay, the key reasons for not taking up. Because this is a preconception test, KKH does not really come into contact with preconception couples. They come into contact with pregnant couples. So, therefore, the only contact points they have are the fertility clinics and in-vitro fertilisation (IVF) clinics. The couples there, I believe, just want to get pregnant. So, if you tell them about genetic tests and possible illnesses their child may have, I think they are probably not in the frame of mind to process the information. And for many of them, I would think, love children and they will say, "Regardless of the situation, I am going to love the kid", and good for them.

The second reason, I strongly suspect – we have not done any study about the reasons – is actually insurance. That if you are tested positive for a genetic condition, couples will ask, "Then what happens to my insurance?"

And thirdly, I think PREDICT covers just too many diseases, 80 diseases. May be more than 80. And for about 100 genetic conditions. It is just too much for couples to digest.

This programme was designed between the Temasek Foundation, the sponsor, and KKH. As the Member may know, I take a particular interest in genomics because I think it has the potential to transform and improve our healthcare system. This Parliamentary Question has piqued my interest. I think the Ministry of Health (MOH) will want to dive into this PREDICT programme. I think it has the potential.

Members might be aware of some of the protocols that we have set up – one for familial hypercholesterolemia (FH), and recently, for BReast CAncer genes (BRCA) 1 and 2 – and there are certain principles that we adopt when we implement genomics in healthcare.

Number one, you have to address the issue of insurance – and Members might know, we are in the process of drafting a new Act that will come to this Chamber to approve – so that genetic data cannot be used for insurance underwriting. And that will provide the assurance to many couples.

Number two, we think it is more likely to be successful if you take a disease-specific approach, like FH or breast cancer, that is clearly linked to certain genetic conditions, and if tested positive, we know what the treatment pathway is, what the implications are, and the doctor can advise the patient what exactly to do or not to do. But to lump 80 diseases into one test, I think, it may be too much.

So, MOH will take an interest in this. We will study how to implement this better because I think there is great potential for us to improve this.