Training oncologists and gynaecologists to provide cancer genetic services, which was previously offered by clinical geneticists only, improved access to genetic testing, according to the Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Malaysian Ovarian Cancer Patients (Magic) study by Cancer Research Malaysia (CRM).
“In the past, genetic testing in ovarian cancer was limited to a small number of patients with the aim of identifying relatives at risk,” says lead researcher and CRM genetic counsellor Yoon Sook Yee.
“Now that there is a drug to treat cancer patients with BRCA mutations, genetic counselling and testing is recommended for all patients with epithelial ovarian cancer. This has increased the number of patients who qualify for testing and specialised centres may become overloaded.
“This is the first nationwide study for ovarian cancer, which we set up to assess if we can improve access to genetic counselling by training oncologists and gynaecologists to provide genetic information.”
Consultant gynaeo-ncologist and study co-lead Prof Dr Woo Yin Ling adds, “Mainstreaming genetic testing and counselling to local hospitals is a strategy to cope with the increased volume of patients.
“This is ideal for a large country like Malaysia where specialised centres are concentrated in the capital, yet the majority of the population live elsewhere. Patients found to have a BRCA mutation still need to be referred to a specialised cancer genetic clinic, but it becomes a smaller group.”
Consultant clinical geneticist and study co-lead Prof Dr Thong Meow Keong adds: “We were concerned whether oncologists and gynae-oncologists could offer these new services in busy clinics that usually focus on treatment, rather than management of cancer risk.
“This study shows that moving the genetic counselling process to the community may be feasible and could be rolled out across Malaysia.”
The Magic study began in 2016, and to date, 68 gynae-oncologists and oncologists from 23 hospitals across Malaysia have been trained to provide genetic counselling to newly-diagnosed ovarian cancer patients. A total of 600 patients had been counselled two years into the study, and results show that one in eight (13%) have altered BRCA genes.
“Nearly half did not suspect that they had a genetic alteration because no one else in the family had developed cancer,” says Yoon. “Through the national study, we were able to provide each patient, no matter where they lived in Malaysia, with information that could help prevent future cancers in the family.”
While patients in the local and specialised counselling arms were equally satisfied with the counselling they received, the local arm had four times more participants.
Yoon says: “Patients seem to prefer local appointments, so if they are referred by their oncologist or gynaecologist to another centre for genetic counselling, they are less likely to go.”
Preliminary results show that most patients were satisfied with their counselling experience, felt informed about their choices, and found it easy to decide to go ahead with genetic testing.
Yoon adds: “These are preliminary results, but mainstreaming of genetic counselling in Malaysia may be a feasible model to improve access to genetic testing services for patients with ovarian cancer. If successful, this model could be adopted for other cancers and in other parts of South-East Asia.”
She says, “Cancer is still a taboo subject in Malaysia and there is a fatalistic attitude to hereditary conditions. Genetic information can cause conflict in families and the data we are collecting on the psychosocial impact of genetic testing will provide insights into the psychosocial challenges.
“With this knowledge, we can focus on interventions to overcome these challenges.”