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Genetics: Would you find out what lies beneath?

Picture used for illustrative purposes alone
Picture used for illustrative purposes alone

Dubai - In today's ever-evolving world, genetic testing can be used to predict an individual's risk to different types of disease.

By Kelly Clarke

Published: Sun 31 Jul 2016, 11:07 PM

Breast cancer, Alzheimer's, Huntington's disease: If you had the chance to find out if either of these diseases awaits you or your offspring, would you?
If you answered yes, what would you do with the information? And more importantly, how do you think it would affect your psychological well-being?

In today's ever-evolving world, genetic testing can be used to predict an individual's risk to different types of disease.
It has the potential to play an important role in both the prevention and treatment of disease.
But the anxiety caused by mis-testing or an unexpected positive result can play havoc with a person's psychological well-being if the right support system is not in place.
With a severe shortage of genetic counsellors here - in fact, only two certified genetic counsellors in the UAE - it is vital the public is educated on the benefits and drawbacks of learning this type of information.
And it begs the question: Is too much information bad for your health?
What is genetic testing?
Genetic testing profiles the genetic diagnosis of vulnerabilities to inherited diseases. It can also be used to determine a child's parentage or a person's ancestry or biological relationship between people.
In the UAE over recent years, we have seen one particular trend when it comes to genetic testing: The increasing popularity of pre-marital screening (Carrier Genetic Test (CGT)), and prenatal screening and testing.
CGT is a simple blood test that is carried out when a couple is planning a family. It can identify whether you or your partner carry a genetic mutation that could cause a serious inherited disorder in your baby.
The CGT could be considered to all consanguineous couples (those marrying first- or second-degree relatives).
Prenatal screening shows the chance that a developing baby has a certain genetic condition, and diagnostic tests show if the developing baby has a certain genetic condition.
But at a cost of up to Dh4,000 per test, not everyone has the means to afford it.
Chasing the unknown
For Lebanese mother-of-one, Joelle Rached, ignorance truly is bliss.
"I've never had genetic testing and my stand point right now is that I never will. Whatever god gives me I want it."
It is all about subjectivity, she said.
"Some people are pro faith and others are pro science. That has a huge impact on shaping someone's views on genetic testing."
Rached said following life's natural course is more appealing to her than interfering with it by finding out "what lies beneath".
But when it comes to her offspring, her mind could be swayed.
"Maybe if I was told something was wrong with my baby, then I would look into seeing if genetic amendments could be made, but for myself, I'd rather stay in the dark. Even with a strong family history of cancer diagnoses, I would still refrain from being tested."
Unaware of the term 'genetic counsellor', Rached said if the situation arose where prenatal screening was a necessity, it would be a doctor she would consult.
However, Kathleen Le Marquand, Certified Genetic Counsellor at Feto Maternal & GenetYX Centre in Dubai, told Khaleej Times this is where mindsets need to change.
"Here, people think because genetic testing is a health-related issue, they have to see their doctor, but that is just not the case."
With genetic testing still a fairly new concept, she said genetic services are very under-represented in the healthcare system here.
"With an increased interest in genetic disease in the region, the UAE should employ more geneticists and genetic counsellors. There are only three geneticists in the country and two certified counsellors."
In her clinic, prenatal screening and diagnosis has proved the most common form of testing.
What is genetic counselling?
Genetic counselling is about providing up-to-date information on testing options, counselling on decision making in the family context, and providing supportive counselling throughout the testing and results process.
But with many doctors unaware that genetic counselling is a service that can be provided, this is another mindset that needs to change, Le Marquand said.
"A change within the referring doctors will increase the demand for genetic testing".
An issue close to home
In a society where consanguineous marriages are common, and cases of diabetes and cancer are high, many doctors say genetic testing is key to unlocking health.
Although it can give incredible insights into a person's health, the psychological impact of such information can definitely take its toll on a person's emotional well-being,
So, in a region where people are showing more interest in finding out what lies beneath, the immediate need now is putting the right people in place to support these patients - namely genetic counsellors and geneticists.
Inherited disorders in the Middle East
The region has higher rates of inherited disorders such as:
> Alpha and Beta
> Thalassaemia
> Cystic fibrosis
> Spinal Muscular Atrophy

Get prepared by asking yourself:
> Does a positive result have any consequences?
> Is the disease preventable?
> Are there other precautions one could take?
> Would a positive result change your family planning?
> What is the benefit of knowing if nothing can be done?
*source - Just 4 Me Genetics,Dubai
Frequently asked questions
What psychological impact does genetic testing have on an individual?
There are a variety of emotions a person undergoing genetic testing experiences in the course of pre-testing, awaiting the results and receiving them. The process could be quite daunting for those who have no clue about what genetics is, and thus they are mostly confused, anxious and frustrated.
Given genetic diseases are linked to the family, many people are also worried for their children and relatives and how the results would impact their lives.
Genetic counselling is recommended along with genetic testing to empower the individual with knowledge of the condition, testing options and to understand what effect it would have on their family members.
How can someone prepare themselves (psychologically speaking) when opting for genetic testing?
Pre-test counselling is highly recommended prior to genetic testing so that the patient can be properly advised on what impact the results could have on their lives. It allows them to mentally prepare themselves. We normally lead the patients into developing a list of feelings/emotions they think they might experience if their test proves positive or negative. This helps the individual explore their thoughts and emotions beforehand and realise how they might react to the results. This makes it much easier when the results arrive. It is surprising how many people express guilt when they test negative for a family mutation.
Answers provided by Sonika Sachanandani-Phulwani, Dubai Health Authority (DHA) accredited genetics counsellor

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