"Education and understanding are key" | #TeamBartsHealth blogs

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"Education and understanding are key"

This South Asian Heritage Month, we spoke to Waltham Forest councillor Shabana Qadir, a participant and patient representative in the Genes & Health study. She shared her experience of being involved and why she hopes other Bangladesh and Pakistani people will take part.

“Everyone has a different reason for getting involved in research. For me, it was my nephew, who was diagnosed with thalassemia major when he was really young. The condition affects people differently, and while a lot is known about it, we’re still learning how it impacts people in different ways.  

“I didn’t know anything about the condition before my nephew was diagnosed but when I researched it, I learned it’s quite common in South Asian communities. And that it’s often diagnosed in children born from a close-relative marriage, a common practice among South Asian communities.

“It was with this information in the back of my head that I agreed to take part in the Genes & Health study. I was in the council chambers one evening and spotted a stall promoting the study. I was immediately drawn to it. I hadn’t seen a research study just for people of Bangladeshi and Pakistani origin before. I signed up immediately and was one of the first people to give a DNA sample. It all went from there.

“I encourage people to get involved”

“Since donating, I’ve become more and more involved. I was part of workshop discussing the best way to tell people they have a genetic fault that might increase their risk of developing a condition like diabetes; I’ve joined the ethics board; and I’m a patient representative on the board for developing culturally competent genetic services. I learn so much but also feel like I’m giving back. I love it.

“I get so involved because for me, education and understanding are key. We know that in some communities, certain conditions are more common than others. For example, there are high rates of mental health problems, diabetes and heart problems in Bangladeshi and Pakistani communities. This can happen for a few reasons, including the traditional practice of close-relative marriage.

“By getting involved in studies like Genes & Health, which tell us more about ourselves, we can make informed decisions and be better equipped to manage any health conditions we or our family members may develop. This information can also be used at a community level, to look for patterns or traits that can in turn, help find new ways to diagnose, prevent and treat different conditions.

“That’s why this South Asian Heritage Month I’m encouraging anyone who comes from a Bangladeshi or Pakistani origin to sign up and get involved in Genes & Health. You’ll be doing something good for yourself, your community and future generations.

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