By Maria Al Hinai
A while back I asked my followers on Twitter and Instagram about their opinions on why some people avoid giving full medical family history, including genetic diseases, to healthcare providers. I got a range of answers, from the fear of being judged to feelings of shame. It still didn’t make sense to me until I got an answer that put things in perspective. One of the responses mentioned was that many Arabs pride themselves with the idea of the purity of their blood. There is an ancient reasoning embedded in the upbringing of many Arabs linking purity of blood (asalah) to strength, which is why they might deny the presence of something that might result in them being perceived as being “weak”. And while over time the mentalities of many people, and their priorities in making marriage decisions, has changed, it might subconsciously still be present.
Ever since I started studying genetics for my higher education, I have taken an interest in the social customs and traditions that surround me. I believe that understanding our society’s way of thinking will allow me to deliver a better standard of care to families with genetic diseases that visit our clinics for genetic counselling. The more clinic sessions I attended, the more I realised a shortcoming from a linguistic aspect.
In Arabic the word wirathah, which translates to “inheritance”, traditionally has a positive connotation. It is often used to describe the inheritance of traits that families pride themselves to have, from bravery to knowledge to eloquence to beauty. Tribes or families try to maintain the positive traits that exist within their members, and since marriages lead to the extension of families, many have traditionally (and some still) often base these marriage decisions on the positive traits that they share in common with other families, or traits they aim to have in their offspring. Tribes known for their leadership traits are often more likely to get married from their own members, or other tribes that share the same traits, to maintain them. On the other hand, a tribe known for its bravery but lacks eloquence will probably get married to a family known for its eloquence to improve their traits.
But were our ancestors right? Are traits such as leadership a result of nature or nurture? Well, there has been a growing interest in an aspect of the heritability of leadership, and leadership role occupancy, among researchers. Trying to find the genetics behind traits can be a bit complex to point out, however, research suggests that it might be a complex combination of both genetic and environmental influences. A research paper published in 2012 by an international research team, which included researchers from UCL, Harvard, NYU, and the University of California, found a genetic influence to leadership. So our ancestors, after all, could be right; such traits could be passed down through generations. However, researchers do not deny that it’s largely a skill that could be acquired. It is important to understand that there has to be more research done to confirm this.
The word wirathah can also translate to “genetics”, which is probably why its use in a hospital setting is often perceived negatively and as a sign of weakness; going against our society’s beliefs about wirathah ,and hence in many situations leading them to deny the presence of health related issues in their families. While wirathah could mean a few things in Arabic, the English language has a clear distinction between “inheritance” and “genetics”, which could make it easier to understand and accept. But despite the choice of words, whether wirathah, inheritance or genetics, it is always difficult to accept that you could pass something perceived as being bad to your children.
Thalassemia and sickle cell anemia, inherited diseases that are common in parts of the Gulf Region, are of particular concern for many Khlaeeji parents. There’s a growing misconception that consanguineous marriages, or blood related marriages such as ones to cousins, are the cause of inherited diseases such as these, when in fact, consanguineous marriages are at a higher risk of such diseases. These diseases are recessively inherited, which means they require two copies of the same detrimental gene to be inherited for the disease to occur. So, you can still find couples unrelated by blood getting children with the same genetic blood disorders running in their families. This is because carriers of these diseases, who do not personally develop the disease, are in high frequency in the population. This means that the chances of you being a carrier and your partner being carrier is high.
In order to help reduce the presence of frequently occurring genetic diseases in the Gulf Region, governments have introduced premarital screening programs to encourage people to test for inherited blood disorders, and to help reduce the alarming presence of disorders in future children. While our ancestors thought of inheritance and associated it with positive traits, it is important to understand the other risks of inheritance from a genetic health perspective. I highly encourage you to get the premarital screening done.
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Maria Al Hinai is an Omani genetic counselor under training. She collects books to seek stories, pens to write her own and mugs to sustain her in doing both. Travel? It is just the proxy that gets her all three at once.