Health researchers must do more to gain the trust of Muslims, new report finds

Health researchers need to do more to gain the trust of Muslim people, new research suggests.

New data indicates that Muslim people living in the UK think health research is very important, but only a small number have taken part in any genetic research studies.

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

More than half (56%) said they would be willing to participate if asked – views broadly representative of the general population.

But only 4% of more than 1,000 Muslims surveyed said they had participated in genetic research.

Genomics England Ambassador Aman Ali is leading efforts to raise awareness of the benefits of genetic research among Muslim communities.

He said: “It is clear from this report that most Muslims recognize the benefits of health research, but much more work needs to be done by the scientific community to increase engagement with Muslims and improve their representation, particularly in genetic research.”

Zaynah Asad, project manager at the Muslim Census, an independent organization which collects representative data to highlight issues facing the Muslim community in the UK, said: “Although Muslims have a large trust in the NHS and a clear interest in scientific developments , they are more skeptical about sharing data with universities and other health institutions.

“Nearly all of the 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 organizations to raise awareness and ensure that Muslims are represented in genetic research.”

The report found that opinions varied between different groups in the Muslim community on the issue of trusting healthcare institutions to protect their data.

More than 63% overall said they would be happy for the NHS to use their data for health research, and Arab Muslims (48 respondents) were particularly open to the idea, with more than 72% willing to trust the NHS with their data.

But less than 55% of black Muslims polled (84) said they would be willing to let the NHS use their data for research, and only 20.9% said they would take part in medical research.

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

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

This is because it can lead to misdiagnosis, poor understanding of certain conditions and inconsistent delivery of healthcare.

It can also lead to uncertainty among underrepresented communities about the collection and use of their genetic data.

Maxine Mackintosh, Genomics England’s diverse data program manager, said: “We want to ensure that all patients have equal, effective and affordable access to genomic medicine, and to achieve this researchers need greater availability of genomic information from different populations, including our Muslim society.”

She added: “We can see from this report that British Muslims are generally very supportive of health research, although it is important to recognize the diversity of views among different groups in British Muslim communities.

“Acknowledging that those who research and deliver health services have not always done enough to address inequalities, I think is an important first step.

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

The report is entitled Attitudes towards health and medical research within the Muslim community.

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