CRM: Mainstreaming Genetic Counselling and Testing for Ovarian Cancer Patients in Malaysia

Cancer Research Malaysia (CRM) has collaborated with geneticists, gynaecologists, and oncologists throughout the nation to complete a study called MaGiC, which stands for “Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Ovarian Cancer Patients in Malaysia”. By spearheading this study, CRM has made Malaysia the first country in Asia to mainstream genetic counselling for ovarian cancer nationwide.

The MaGiC study began in 2017 to determine the feasibility and impact of introducing mainstreaming – namely, the implementation of genetic or genomic testing in other specialties such as oncology, to aid diagnosis and/or treatment – to the Malaysian population. Through this study, a total of 800 ovarian cancer patients across Malaysia had access to genetic testing and counselling for faulty BRCA genes: a drastic increase in access to genetic testing from an estimated 5% to 52%.

The impact has been positive in that mainstreaming is proven to be a feasible option to address the increasing need for genetic services in lower-resource settings like Malaysia and other Asian countries, thus paving the way to improve patient access to better treatment and risk management options.

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WHY DOES MAINSTREAMING GENETICS MATTER?
Ovarian cancer is often called the ‘Silent Killer’ as there are no noticeable symptoms in the early stages and there is no blood test or screening method for early detection of the disease. Earlier research from Cancer Research Malaysia showed that one in nine Malaysian ovarian cancer patients inherited alterations in the BRCA1 or BRCA2 genes, as compared to 1 in 20 breast cancer patients and 1 in 1,000 healthy individuals.

This may be because the main doctors treating ovarian cancer patients (i.e. oncologists and gynae-oncologists) were not trained to provide genetic information, few patients were informed that they may have inherited a BRCA1 or BRCA2 gene alteration which could be hereditary. Women who inherit this gene alteration have a higher risk of developing breast and ovarian cancer. On the other hand, men who inherit altered BRCA1 gene have a higher risk of developing breast cancer, while those who inherit altered BRCA2 gene have a higher risk of developing breast, prostate, and pancreatic cancer. Thus, knowing their status enables individuals to undertake preventative measures.

As for cancer patients, there are now new treatments that specifically kill breast and ovarian cancers in gene carriers. By training oncologists and gynae-oncologists to provide these new services, more women will be informed about their genetic risk which enables better management of cancer risk and in certain cases, access to lifesaving treatment.

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An example would be Angelina Jolie’s choice of a preventive double mastectomy in 2013 as well as the removal of her ovaries a year later. This was done as she had inherited a faulty BRCA1 gene that increased her risk of cancer – her doctors estimated that she had an 87% chance of having breast cancer and a 50% chance of having ovarian cancer in her lifetime. Her story has led to a spike in requests for the BRCA genetic test throughout the world to better manage the risk of cancer.

Prof. Dr. Woo Yin Ling, Consultant Gynae-oncologist at University Malaya and Lead Clinician in the MaGiC study said, “This study has shown that mainstreaming among the gynae-oncologists and oncologists is feasible, and it has built that resource of trained clinicians nationwide to improve genetic counselling and testing access”

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Dato Dr. Rushdan, a gynaecologist at a Ministry of Health Hospital explained, “As one of the few trained surgeons that specialise in women’s cancers, we manage the treatment of many women with different types of cancers. However, prior to this study, we received little training on how to incorporate genetics in our clinics. As a hospital situated outside of Klang Valley, it was a challenge for patients to have access to this kind of service. Thanks to the MaGiC study, we are delighted to provide equitable access to precision medicine and we hope that this will lead to an improvement in survival rates of ovarian cancer patients in Malaysia.”

Ms. Yoon Sook-Yee, Principal Investigator of the Study and Genetic Counsellor at Cancer Research Malaysia explained that “Identifying BRCA mutations in ovarian cancer patients is important for their medical management and preventative measures for their relatives. However, due to the lack of genetic counsellors, clinical geneticists and awareness among clinicians, there is inadequate genetic testing in most parts of Asia. Mainstreaming genetic counselling will help improve access to BRCA genetic testing in Malaysia, thereby allowing us to identify individuals with higher risk of cancer as well as improve patient access to better treatment and risk management options.”

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THE RESOURCE CHALLENGE
In Malaysia and many parts of the world, genetic testing and counselling are carried out traditionally in a genetics clinic, by genetic counsellors and clinical geneticists. Unfortunately, Malaysia has only 14 clinical geneticists and 9 genetic counsellors nationwide. This is clearly insufficient to serve a nation of 32 million (in comparison, there are more than 5,000 genetic counsellors in the U.S. to serve a population of 330 million).

While plans have been put in place to increase the number of genetic counsellors in Malaysia, building genetic counselling capacity is a long process, and the rapid advancement of genetic technologies means genetic services will have difficulty catching up. This problem is not unique to Malaysia and is also felt in high-resourced countries.

For that reason, the MaGiC study was embarked upon to test a new approach to ensure genetic testing and counselling reach patients nationwide.

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HOW DO WE MAINSTREAM GENETIC COUNSELLING?
Specialists, such as gynaecologists and oncologists, who are the frontliners treating ovarian cancer patients, will be provided with training to introduce genetic testing to their patients.

This can overcome logistical issues of referring patients to a clinical service many miles away or having to wait several months for an appointment with a genetics specialist. The completion of the MaGiC study has provided real-world experience on the feasibility of introducing mainstreaming to our population.

The MaGiC study has proven that mainstreaming is a viable option to address the increasing need for genetic services in lower-resource settings like Malaysia and other Asian countries. In doing so, patients and healthy individuals with family history of cancer can understand their risk as well as their families’ and subsequently choose suitable cancer screening, prevention, or treatment.

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Genetic counseling service was previously only available at 4 clinics; access has since grown to make this available in 23 hospitals. Professor Datin Paduka Dr. Teo Soo Hwang, Chief Scientific Officer of Cancer Research Malaysia added, “Our earlier research had identified how common this genetic alteration is. Therefore, we have developed a more accessible alternative to conduct the genetic test. We are overjoyed to have mainstreamed our services which enable greater access to genetics services nationwide. What we do is only possible because of the support from the public through partnerships, fundraisers, and donations – that is the key to the sustainability of this programme.”

The MaGiC study, which was recently published by the Journal of Medical Genetics, was made possible with the support of Yayasan Sime Darby, Yayasan PETRONAS, Khind Starfish Foundation and the AstraZeneca External Investigator Grant. The study was co-led by Ms. Yoon Sook-Yee (Principle Investigator and Lead Genetic Counsellor, Cancer Research Malaysia), Professor Dr. Woo Yin Ling (Lead Clinician and Consultant Gynae-oncologist at University Malaya), Prof. Dr. Thong Meow Keong (Lead Clinical Geneticist and Consultant Medical Geneticist at University Malaya) and Dr. Joanna Lim (Lead Laboratory Scientist and Head of Core Laboratory at Cancer Research Malaysia).

For more information on genetic counseling, check out www.cancerresearch.my. To support Cancer Research Malaysia, donations can be made to CRM at www.cancerresearch.my/donate.

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