How I get my community involved in genetic health research: A diary entry

Aman Ali, community organiser


I first came across the world of genes and genomics in a meaningful manner during my undergraduate studies at Queen Mary University, where I studied Biology with Psychology. I must admit I did not particularly enjoy most of my course’s offerings in the three years I was at university, but there was one module which piqued my interest; and that was Cancer Genomics.

Unfortunately, such was my luck at the time that because I had psychology as a minor in my degree, any optional modules I had to pick had to be within the field of psychology. I had really wanted to study Cancer Genomics because, for once, I was genuinely curious about what I would learn. A less noble motivation was that the module was being taught at Charterhouse, ten minutes commute from my house.

I never did get to do that module, and I never got a chance to visit Charterhouse, and in the back of my mind, I had a nagging curiosity as to what I could have learnt and how life could have been different.

Charterhouse happens to also be the headquarters of Genomics England. I did not know that at the time, and I wasn’t to know that more than a decade later I would find myself visiting the building but under very different circumstances.

I say that my life could have been different because my lack of passion for science meant I did not pursue science as a career, as I had imagined I would. After university, I taught science in school for a year and a half, more out of a necessity than anything, then pivoted my career toward community organising and political lobbying.

For the past decade, I have been involved in various local and national community-related initiatives. I have been involved in youth clubs, charities, political campaigns and so much more. The community that I am part of and have dedicated a good part of a decade trying to improve outcomes for is the Muslim community.

When I say Muslim community, it is really Muslim communities I should be saying. Because when it comes to Muslims in the UK, there is incredible diversity in terms of ethnicity, language, culture, fashion, and best of all - food (and I have had a taste of all the flavours!).

For the past 6 years, I have focused my attention on tackling what I believe to be the biggest challenge facing my community, which is Islamophobia. This has led to me travelling across the UK organising communities to raise awareness, build political power in communities and through this, I have developed a fairly good sense of understanding of the Muslim communities in the UK.

During the pandemic, Muslim communities were particularly impacted. There were many reasons for this, including issues of social mobility (50% of Muslims living in the UK live in the 10 poorest boroughs in the UK), disparities in public health experiences and potentially even a genetic reason also.

It was very quickly established by research studies that ethnic minority communities had higher risks of dying from COVID-19 than the white British majority.

To better understand why some people were severely affected by COVID-19 and others were only mildly affected or had no symptoms at all, Genomics England in partnership with the GenOMICC consortium were looking at the genomes of 20,000 who were hospitalised with COVID-19 and compared them with the genomes of people who were mildly affected.

An important part of the study was making sure the samples were representative of the UK population. Genomics England approached me to see if I could lend a hand in engaging with and recruiting Muslims, who predominantly come from ethnic minority backgrounds.

We know that public participation in health research translates into better care for patients and service users. It also helps to influence policy and practice that aids in advancing healthcare and treatment techniques. Yet, data on the participation of ethnic minorities is largely inaccurate or not easily available as ethnicity data is not routinely collected in studies, including current COVID-19 studies.

It is for these reasons I more than willingly agreed to support, and went about assisting the team at Genomics England to encourage Muslims to attend their local pop-up centres to recruit participants for the study.

I began by picking up the phone and reaching out to some of my contacts across the UK. They varied from fellow community organisers, local Muslim organisations and local Imams at mosques.

Most were very willing to assist when I told them about the aims of the study. However, when I explained the genetic nature of the study and mentioned that blood samples would be taken for research purposes, many did not feel that they understood, or were hesitant.

From these experiences, I came to the conclusion that we have an issue when it comes to engaging Muslim communities in genetic research. Colleagues at Genomics England also informed me that it has been an ongoing challenge to recruit participants from ethnic minority backgrounds.

I must admit if it had not been for the emotional pull of COVID-19 or the personal trust that people had in me, I doubt I would have received the eventual positive response I did. It made me think that if there was a future study looking at another, not-so-well-known disease, that the study may have failed to recruit sufficient participants from ethnic minority backgrounds, and those communities might have been excluded from the benefits of research, which could include improved treatment.

Having said that, I am happy to say that the study was successfully able to recruit a sizeable number of participants from ethnic minority backgrounds, and you can read more about the results of that study here.

But the story doesn’t end there. On the back of the GenOMICC COVID-19 study, I have embarked on a journey as a community ambassador for Genomics England and found myself visiting the Charterhouse building of my undergraduate studies strategising diverse ways to improve Muslim communities’ engagement with genomic research.

One of the first things I told myself was that before I plan anything, I want to know what Muslims actually think about genomics. To truly understand what Muslims, think, I approached Muslim Census, an independent organisation committed to collecting representative data, to highlight issues faced by the UK Muslim community.

Muslim Census surveyed over 1,000 Muslims across the UK to understand their attitudes to health research and genomics and the results were eye-opening. We learnt what the information-seeking behaviours of Muslims are, what their views of health research are, and what they think of genomics.

For Muslim communities trust is the most principal factor when considering health care choices. Younger people born in the digital world know that they can access reliable information readily online, whereas the elder generations rely on the trust that their family and friends will look out for what is in their best interests.

In our study we found that younger Muslims rated health research as more important than those older than them. 90% of those aged 18-24 rated health research as very important, compared to 79% of those aged over 45. With such positive attitudes present in the younger generations, community engagement projects should seek to prioritise this demographic to achieve maximum benefit.

Crucially, the survey participants also informed us of the best ways they think engagement could be improved with Muslim communities. Suggestions came forward for language cues that work best when attempting to reach Muslim communities and the benefits of highlighting collective benefits over individual benefits when communicating with Muslim audiences.

Another clear observation was the nature of diversity within the Muslim community in terms of ethnicity, which is in stark contrast to what is often portrayed as a homogenous community. Therefore, researchers and healthcare professionals should approach each ethnic minority group with bespoke, appropriate solutions to promote better engagement and inclusion at all stages of health research.

The above insights have provided a blueprint for a community engagement plan which I look forward to progressing with in the coming months and years. To find out what we learnt from our attitudes survey you can read my insights article into the study here.

Empowered with the insights from the study I hope those who work within genomics will benefit from a better understanding of Muslim communities. I also hope that it will benefit professional practice, be that genetic counsellors who meet Muslim families in their surgery, or researchers who take into consideration the insights from this study for their future projects.

Beyond individual practice, I hope organisations will also benefit regarding their community engagement strategies and healthcare organisations in terms of the key concerns they need to overcome to earn trust within communities.

Now equipped with insights into the attitudes Muslim communities have toward health and medical research, and how engagement can be improved, I hope to see a future where the Muslims’ familiarity with genomics is improved so that Muslims are never missed in datasets, and future research studies will benefit everyone.

 

If you are interested in joining Genomics England as an Ambassador, find out more here.

 

Aman Ali is a community organiser who has played various national and local roles in Muslim communities for more than a decade. He’s been the Head of community engagement at MEND, trustee of the East London Mosque and Head of Media at the Federation of Student Islamic societies to name a few. He completed his postgraduate studies at UCL’s institute of education, having initially graduated from Queen Mary University with a BSc in Biology with Psychology. Aman first got involved with Genomics England during the COVID-19 study where he played a significant role in recruiting participants from Muslim communities across the country. He now is a community ambassador at Genomics England with a view to helping the organisation engage Muslim communities on a long-term basis.