Malaysia needs more genetic counsellors

HEALTH Minister Datuk Seri Dr AdhamBabasaid thecountryneeded more genetic health professionals at the launch of the 2019 Malaysia Thalassaemia Registry (MTR) report on Aug 25.

More recently on Sept 7, Senator Ras Adiba Mohd Radzi in her Dewan Negara debate reiterated the need for more genetic counsellors to provide support to patients and families in the country affected by genetic diseases.

Genetic Counselling Society Malaysia (GCSM) echoes these calls to increase the number of genetic health professionals.

Genetic counselling helps individuals understand about genetic diseases that they or their family may be facing and to make informed choices about genetic testing, therapeutic and reproductive risk management options.

The need for genetic counselling has increased exponentially and the role of genetic counsellors to manage emerging counselling issues is evolving. An estimated five to eight per cent of the population are affected by rare diseases, which are mostly genetic in origin.

Many of these diseases affect the whole family, not individual patients. Healthy individuals in the family have reproductive risk of giving birth to affected children, prompting the statement made by our health minister.

In Malaysia, the use of genetic testing in diagnosis and treatment is following the trend seen in many other developed countries and it is timely that healthcare professionals come together to lead and guide the provision of genetic counselling in the country.

In the country, genetic counselling is available mainly in government hospitals, which are appointed referral centres for clinical genetic services, such as Hospital Kuala Lumpur, University Malaya Medical Centre, Penang General Hospital, Hospital Universiti Kebangsaan Malaysia and Hospital Universiti Sains Malaysia.

In the private sector, there are genetic counsellors i n Cancer Research Malaysia, Genetic Counselling Asia and Loh Guan Lye Hospital. There are four overseas trained genetic counsellors who have come back to serve in Malaysia and efforts have beenmade to train more locally.

The Masters of Medical Science (Genetic Counselling) was set up by Universiti Kebangsaan Malaysia (UKM) in 2015 and UKM has trained five graduate genetic counsellors since.

Genetic counsellors are expected to be in high demand in the coming years because of the new breadth and depth of analyses thanks to the advancement in research, resource and technology. However, with just 14 clinical geneticists and nine genetic counsellors in Malaysia, it is clearly insufficient to serve a nation of 32 million.

The Royal College of Physicians United Kingdom recommends a minimum of three consultant clinical geneticists per million population and the Association of Genetic Nurse and Counsellors, United Kingdom recommends one full-time genetic counsellor per 100,000 population.

We are falling far behind such recommendations, especially in providing access to the B40 segment of the population.

GCSMis now working closely with the Health Ministry, particularly through the Division of Allied Health Sciences to develop an appropriate credentialling pathway for genetic counsellors to maintain professional standards ensuring patients’ safety and to create a career pathway for genetic counsellors in the public sector.

To this end, we urge the Health Ministry to expedite the formal recognition of the role played by genetic counsellors to increase access to safe andefficientgeneticcounsellingsupport for Malaysians.

YOON SOOK-YEE

Genetic Counselling Society

Malaysia (GCSM) president; Familial Cancer head, Cancer Research Malaysia

PROFESSOR DR THONG MEOW KEONG

GCSM adviser; consultant clinical geneticist, University Malaya Medical Centre

DR KENG WEE TEIK

GCSM adviser; consultant clinical geneticist, Hospital Kuala Lumpur