Drive to gain trust of Muslims in UK for gene research

Only a small number of Muslim people in the UK take part in any genetic research studies, despite recognising the value of health research, new data shows.

According to a report, commissioned by Genomics England and compiled by Muslim Census, 86 per cent of Muslims see health research as very important.

More than half (56 per cent) said they would be willing to participate if asked — views that are broadly representative of the general population.

However, only 4 per cent of more than 1,000 Muslims surveyed said they had taken part in genetic research.

Genomics England ambassador Aman Ali is leading the drive to increase awareness of the benefits of genetic research among Muslim communities.

“It’s clear from this report that most Muslims recognise the benefits of health research," he said.

"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.”

Zaynah Asad, Project Manager at Muslim Census, an independent organisation that collects representative data, to highlight issues faced by the UK Muslim community, said: “While Muslims largely trust the NHS 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 per cent overall said they would be happy for the NHS, Britain's public health service, to use their data for healthcare research. Arab Muslims (48 polled) were especially open to the idea, with more than 72 per cent willing to trust the NHS with their data.

But less than 55 per cent of black Muslims surveyed (84) said they would be willing to allow the NHS to use their data for research and only 20.9 per cent said they would participate in medical research.

Genomics England wanted to understand how Muslim communities viewed medical research because, to date, studies of genetic diseases have been largely based on European ancestry, with ethnically diverse people being massively under-represented.

It says the use of imbalanced and biased datasets has crucial implications for the increasing use of genetics in UK healthcare.

This is because it can result in misdiagnoses, poor understanding of certain conditions and inconsistent delivery of health care.

It can also lead to uncertainty among under-represented communities around the collection and use of their genetic data.

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.”

She added: “We can see from this report that UK Muslims are generally highly supportive of health research though it’s important to recognise the diversity of views amongst different groups within UK Muslim communities.

“Acknowledging that those doing research and providing healthcare services have not always done enough to address inequities, I think is an important first step.

“Now we need to dig deeper to understand and tackle the reasons for a lack of trust in specific communities, especially on the issue of protecting people’s medical data.”

The report is titled Attitude towards health and medical research within the Muslim community.