Elham Asaad Buaras

Health researchers need to do more to gain the trust of Muslims, according to research by Genomics England. A survey of over 1,000 Muslims shows they value health research, but only a small fraction (4%) have taken part in any genetic research studies.

According to the report titled, Attitude towards health and medical research within the Muslim community, 86 per cent of Muslims see health research as vital.

The strongest trend was generational: younger Muslims rated health research as more important, with 9 of 10 those aged 18–24 rating health research as very important, compared to 79% of those aged over 45.  

And in line with the general population, over half (56 per cent) of Muslim respondents said they would participate if asked.

“Most Muslims recognise the benefits of health research but a lot more work needs to be done by the scientific community to increase engagement with Muslims and improve their representation, particularly in the field of genetic research,” said Genomics England ambassador, Aman Ali.

The report published on August 9 revealed that almost all survey responses highlighted the need for transparency from researchers to build trust with the Muslim community

Zaynah Asad, Project Manager at Muslim Census, said, “While Muslims largely trust the National Health Service and have a clear interest in scientific developments, they are more sceptical of sharing data with universities and other healthcare institutions.

“Almost all survey responses highlighted the need for transparency from researchers to build trust with the Muslim community. Researchers should continue to engage directly with the Muslim community and Muslim-led health organisations to raise awareness and ensure Muslims are represented in genetic research.”

The report found that opinions varied between different groups within the Muslim community on the issue of trusting healthcare institutions to protect their data. More than 63% of participants said they would be happy for the NHS to use their data for healthcare research and Arab Muslims (48 polled) were especially open to the idea, with more than 72% willing to trust the NHS with their data.

But less than 55% of Black Muslims surveyed said they would be willing to allow the NHS to use their data for research and only 20.9% said they would participate in medical research.

When asked about why respondents might be unwilling to participate in health research if offered to do so, 81% of respondents had concerns about the risk of taking part in medical research and felt like they did not know enough about what is involved in health research to take part. 62% of respondents chose lack of time as the reason for their unwillingness.

Interestingly, 76% of respondents who were unwilling to participate in health research stated that they do not know enough about what is involved in health research to take part.

Muslim men were more concerned about the risks of taking part in medical research as were Muslims aged 25 and above and Muslims of African or Caribbean descent, whilst older Muslims stated lack of time. A majority of Arab and Indian Muslims would not trust those doing the research to have their best interests at heart compared to Pakistani and Muslims of mixed, English or other ethnicities felt uninformed about research procedures therefore highlighting a lack of educational awareness amongst those ethnic groups.

Maxine Mackintosh, Genomics England’s programme lead on diverse data, said: “We want to make sure that all patients have equal, effective, and affordable access to genomic medicine and, to achieve this, scientists need greater availability of genomic information from diverse populations including our Muslim communities.”

For greater Muslim participation in medical research, the British Islamic Medical Association (BIMA) has called for work exploring the issues of research participation within communities with significant impetus from key organisations.

Dr Anas Tahir, BIMA spokesman told The Muslim News the “disparity between the recognition of health research as a priority and a lack of participation is a persistent theme with other significant chronic conditions, including diabetes and heart disease, where many British Muslim communities continue to experience poor outcomes and experiences.”

He continued, “This report further highlights the exclusion and the lack of opportunity to ensure that there is appropriate and relevant input from Muslim communities. Whilst British Muslim communities are ethnically diverse, the implications of this report are significant and may contribute to a better understanding of the widening of health inequalities.”