https://www.nst.com.my/opinion/letters/2022/08/826793/recognise-genetic-counsellors

August 30, 2022 @ 12:05am

LETTERS: If you are thinking about getting pregnant, you may have conflicting thoughts. While welcoming a new baby is thrilling, it is normal to feel overwhelmed.

You want to make sure your child is healthy throughout your pregnancy and after delivery, especially if you carry a genetic risk and may pass it to your baby.

Genetic diseases such as Thalassaemia, Spinal Muscular Atrophy and Duchenne Muscular Dystrophy are inherited and can be passed down to offspring.

Finding out whether your kid is at risk for genetic diseases, receiving counselling and making early preparation for the birth of a child with special needs are now possible, thanks to genetic counselling services.

Genetic counsellors help individuals make sense of genetic disorders and other inherited health conditions that may be difficult to comprehend.

Understanding the findings of genetic testing may be difficult, but a genetic counsellor will guide you through the process of making informed choices for you and your child.

Hence, the significance of genetic counsellors cannot be underestimated.

In a written response to a parliamentary inquiry on Oct 27 last year, Health Minister Khairy Jamaluddin said genetic counselling sessions are now conducted at genetic specialist clinics at Health Ministry hospitals.

In countries where clinical genetic services are well established, a clinical geneticist — a medical specialist — is supported by genetic counsellors who are usually from related backgrounds, such as nursing, paramedic, psychology, genetics or biological sciences.

In other words, a typical genetic counselling team consists of a clinical geneticist, who is a medical specialist or consultant, and a genetic counsellor who provides the important support and completion to the team.

However, in Malaysia, there is no genetic counsellor service scheme in place under the Public Service Department (PSD) employment scheme.

For genetic counselling services to progress in our country, a formal and official recognition by the PSD in the form of a dedicated post for genetic counsellors under the Health Ministry is long overdue.

Currently, clinical genetic services, which also include genetic counselling services, are provided by the Health Ministry at Kuala Lumpur Hospital and Penang Hospital.

There are also clinical geneticists at Universiti Sains Malaysia Hospital in Kubang Kerian, Canselor Tuanku Muhriz Hospital in Cheras and University Malaya Medical Centre, Kuala Lumpur.

The Royal College of Physicians of the United Kingdom recommends a minimum of six to 12 consultant clinical geneticists per million people. With Malaysia's population predicted to reach 33.80 million by the end of the year, we need at least 198 consultants. Sadly, we are significantly behind as we only have about 11 clinical geneticists.

To train more genetic counsellors, Universiti Kebangsaan Malaysia in 2015 introduced a two-year Master of Medical Science (Genetic Counselling) programme to train students for clinical practise in the field of genetic counselling relevant to the demand for skilled genetic counsellors in Malaysia.

In line with advancements in medicine and healthcare, Malaysia is following the trend in many high-income nations in using genetic testing for diagnosis and treatment. So it is important for medical experts to band together to lead and direct the delivery of genetic counselling in the nation.

There are benefits and risks to genetic testing, but it is ultimately a personal decision and a person's wish to submit to testing can be complex and personal.

A genetic counsellor can help you decide by discussing the pros and cons of testing, as well as its potential social and emotional effects.

To provide more Malaysians with access to quality genetic counselling services, we strongly suggest the Health Ministry act rapidly to formally recognise the role of genetic counsellors.