Empowering people to make the right decisions about genetic testing and risk management
The breast cancer 1 (BRCA1) and breast cancer 2 (BRCA2) genes are the genes most commonly affected in hereditary breast and ovarian cancer. Although BRCA genetic testing has been developed for more than 20 years and is used widely for identify high risk individuals, very few Malaysian have access to the testing, mainly due to the lack of genetic counsellors and genetic services in Malaysia, according to Yoon Sook-Yee, Genetic Counsellor and Head of Familial Research Project of Cancer Research Malaysia (CRM).
Yoon is a genetic counsellor accredited by the Human Genetics Society of Australasia (HGSA) and is one of the only two accredited genetic counsellors in Malaysia, serving a population of up to 5,000 new breast cancer patients and 1,000 new ovarian cancer patients each year.
“Genetic counselling provides the individual with the information needed to make decisions about genetic testing based on their risk assessment, family and social structure, psychological impact of the different possible test results and concerns about insurance and possible discrimination.
“It is therefore important for individuals who have a family history of clusters of cancers such as breast and ovarian, patients who have had cancer at a young age, or patients who have had several types of different cancers, to go for genetic counselling,” she says.
And so, in 2016, CRM launched the MaGiC Study (Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Ovarian Cancer Patients in Malaysia) in collaboration with Professor Nazneen Rahman at the Institute of Cancer Research, Royal Marsden Hospital, London to implement mainstreaming cancer genetics training modules to oncologists and gynaeoncologists in 21 sites across Malaysia.
“So far, more than 200 ovarian cancer patients have volunteered to participate in the programme, and CRM has trained 31 oncologists and 28 gynae-oncologists nationwide,” she says.
Malaysians at risk of heredity cancers may be offered genetic testing without charge if they meet the research testing criteria. Members of the public who like to participate in the MaGiC study can speak to their doctors to go to the nearest study site in each state.
“I was diagnosed with cancer at the age of 28. I have a family history of breast and ovarian cancer. I am so glad I found out about by mutation status via the MaGiC study. Now I understand why there are so many cancers in my family. Most importantly, I now know how to manage my two daughters and their risk in future. I would not be able to do that if I had not been in the MyBrCa study.” – Ms LPL