How genetic counselling can help cancer patients in navigating concerns
Yoon Sook Yee, one of only two certified genetic counsellors in Malaysia, shares with Sinar Daily on why genetic counselling is just as important as genetic testing.
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According to Health Minister Khairy Jamaluddin, the number of Malaysians that will be diagnosed with the disease is expected to rise to 66,000 annually by the year 2030.
One of the ways in which we can fight this silent killer is through genetic testing and genetic counselling.
Genetic testing is a process that identifies changes in an individual's genes, which in turn can predict any medical condition that may have genetic roots.
It is usually done on asymptomatic individuals to spot potential risks for any diseases or specific genetic traits. Should any complications arise then further diagnostic tests can be done to confirm the particular genetic disorder.
The problem with genetic testing is that it is a one-size-fits-all report, which is easy to understand but difficult to interpret.
Results of genetic testing can often be uninformative and end up causing more stress and anxiety over the possibility of a disease that you may never even have.
Genetic Counselling Society Malaysia's president Yoon Sook Yee, who is also one of two certified genetic counsellors in the country, told Sinar Daily that this is where genetic counselling comes in.
Genetic counselling simplifies the process for patients seeking treatment options after the genetic test is done.
“What we essentially do is help increase a family's awareness and understanding of particular genetic diseases and the risk and benefits of testing, disease management, and the options available to them," she said.
Genetic counselling also allows families to identify the consequences of genetic disorders, invite unique personal, cultural, and familial contacts.
Besides providing information on making more informed medical decisions, genetic counsellors also provide counselling services on advocating for patients. These medical specialists can refer individuals and their families to relevant healthcare professionals.
Although genetic testing and counselling are applicable to a wide range of issues such as pregnancy planning, it is instrumental when it comes to treating cancer.
It is no secret that any form of cancer, when detected in its early stages, is highly likely to be cured.
With genetic testing and counselling, the probability of that happening increases exponentially due to early diagnoses.
This is because the essence of what genetic counsellors does is that they examine individuals with a personal diagnosis and/or family history of cancer or symptoms of an inherited cancer syndrome.
They take family history into account and assess the hereditary risks, or risks that can be passed from one generation to another. If indicated, they can coordinate using genetic testing, typically through blood sample or saliva sample, to assess the hereditary risk for cancer.
If the genetic test comes out positive, testing should be considered for the individual’s relatives.
Personalised medical management and cancer screening recommendations are provided and having access to genetic counselling further smoothens the process of seeking treatment if needed.
However, genetic counsellors do more than provide medical-related information during the post-test session.
“We focus on helping families cope with the emotional, psychological, and social consequences of the test results. Psychological issues such as denial, anxiety, anger, grief, guilt, or blame in particular are addressed and, when necessary, referrals for in-depth counselling are offered.
“People are becoming more aware of genetic counselling but still have their reservations about reaching out to us,” Yoon said.
Genetic counsellors are not medical doctors, but rather healthcare professionals, and this is partly the reason why most patients believe that they can skip this significant step in their treatment.
“What patients need to understand is that genetic counselling is not a one-off treatment. Genetic counsellors are there every step of the way while you seek help to fill the communication gaps between patient and doctor,” she added.
The estimated costs for genetic counselling depends on the sort of treatment the patient is going for, but is priced from RM2,000 per package. This includes patients that have to return for multiple sessions.
Yoon said there is a growing demand for more genetic counsellors as genetic testing becomes more popular, however there are some concerns in meeting the demand.
“This is a problem because the amount of education needed to prepare a genetic counsellor for their duties requires years of postgraduate study and professional training,” Yoon revealed.
To date, only one university in Malaysia, the National University of Malaysia (UKM), offers a genetic counselling course.
Currently, there are nine genetic counsellors in Malaysia, two of which are certified.
