Why we felt this work was important in the context of genomic healthcare
To date, studies of human genetics have focused on populations from European ancestry, which has contributed to many groups of people being massively underrepresented in genomic datasets, and therefore research. Mils and Rahal found that 88-90% of studies only include white European individuals, this would mean that only 16% of the world's population is represented in research and that the data of the rest of the world is absent from studies of human genetics (1).
This has huge implications for the development of healthcare - it means the application of research findings to ethnically diverse populations could be dangerous if it leads to an underassessment of the risks involved (2).
Further concern is raised when considering previous mistreatment and manipulation of ethnic minority groups that led to a distrust in healthcare systems (3) and how this may have contributed to a negative attitude towards medical research and a lack of willingness to participate.
Indeed, studies (4, 5, 6) have suggested that ethnic minority groups tend to have different views about genomics and are less engaged with health research, despite researchers’ apparent efforts to include more ethnic minority groups in their health research.
There is also not much known about where Muslims seek health information from, and whether this is more likely to be rooted in the religious community rather than mainstream, scientific sources.
The UK has a thriving health research environment. Each year, more people take part in research studies (7). Furthermore, medical research remains one of the top five causes supported by British people through charitable donations (8).
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. Even when data is collected it is not necessarily aligned amongst studies which causes issues around standardisation and the ability to carry out comparative analysis.
There is increasing recognition of the need for health research to be more representative of the demographic make-up of the general population in the UK, which includes ethnicity as well as other characteristics. Ethnic inequalities in health and social care have been well documented in published research, becoming even more prevalent during the COVID-19 pandemic where it became clear that individuals from ethnic minority groups were disproportionately affected by the coronavirus infection (9), emphasising the need to obtain good quality research information from these groups (10).
Muslim Census, commissioned by Genomics England, surveyed 1,007 Muslims aged 18+ living in the UK to understand whether preconceptions about British Muslims’ attitudes toward health research and genomics more broadly, as well as health information, are based on fact. Our aim is for the findings to support our understanding of how to engage with Muslims in the UK, to increase Muslim representation in genomic research. It is also worth mentioning that we understand that a survey of 1,007 Muslims based in the UK will not necessarily cover the breadth of attitudes of the wider population, and we must consider intersectionality. However, what we glean from this report will still be important as a starting point as this work will factor into a wider initiative to explore engagement. It is also important to note that many references to “Muslim attitudes” in the report and in this article are about what we have learned from our survey respondents.
The NHS is the most trusted source
According to our survey, the Muslims we surveyed said they turn to the NHS website and their GP at a rate more than 2.5 times higher than the next 3 options combined, making the NHS the most trusted source within the community. 73% of Muslims listed the NHS website as one of their go-to sources for medical information, which makes it the overwhelmingly favoured source of information.
When considering ethnic differences, it was found that Arab Muslims preferred online sources 11% more than the Muslim population more generally. Whereas Black Muslims were more than a third less likely than other Muslims to consult GPs when looking for medical information, with only 42% reaching out compared to 62% of the overall Muslim population. This effect was especially strong among younger Muslims. In the 18-24 age bracket, this effect was especially stark, with only 29% of Black Muslims reaching out to their GPs.
With this being the case, it is crucial that the communities who are less likely to approach their GP are not left behind when it comes to engagement with genomic healthcare. The findings highlight the need for community engagement projects that bridge this gap and the need for targeted interventions.
Whilst younger Muslims tended to use online sources more, older Muslims were more likely to turn to family and friends – around two times more than those younger than 35.
The reason for behaviour patterns observed by Muslims indicate that trust is the main factor for why they chose a source of healthcare information. 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. This trend also indicates the crucial role younger generations can play in reaching older generations. Instead of trying to directly target older generations, it may be that the best way to reach them is in fact by engaging their younger family members.
Health research is widely regarded as important
It was shown in our survey that a large majority (86%) of Muslims think that health research is very important. This is in line with the general population whereby an NHS study found that 83% of the UK population think health research is very important (11).
Although there were limited differences between ethnicities, age and gender, there was a noteworthy generational difference in attitudes. 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.
This means that a significant number of Muslims living in the UK view health research as very important because nearly half of all Muslims in the UK are under the age of 25 (12). With such positive attitudes present in the younger generations, community engagement projects should seek to prioritise this demographic to achieve maximum benefit.
Risks and uncertainty still affect levels of health research participation
Our study showed that, more than half of Muslims have a positive response to participating in health research, with 56% saying they would be willing to take part in health research if asked to do so. This means that there is still a significant group who have concerns or issues around trust with regards to health research participation.
22% of Muslims from our sample had previously taken part in health research. Those from a professional medical background or who had genetic conditions themselves and/or in their families were more likely to participate in health research compared to those that had no reason to inform themselves about health research otherwise, likely because they are more directly informed about the benefits of taking part, and perhaps because their doubts have been aired and reassured.
Those who had taken part in health research gave a range of reasons for taking part. Some participated because they were paid for it whilst others were ‘aware of how beneficial the information is to improve healthcare.’ Most said they wanted ‘to support scientific developments’ as many worked in the field so were ‘passionate about research’ and thus understood the importance of establishing ‘innovation and better-targeted services and care.’ Many answered that they felt it was their ‘duty’ to do so to benefit their ‘community,’ ‘medical development’ and ‘advancements’ as well as participating for ‘the greater good it may bring society.’
When asked 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 76% 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 (especially in older Muslims), which suggests that they are not unwilling and concerned about risks, but perhaps have not been compelled by the communicated benefits of taking part.
All the above responses provide great insight into the best ways to recruit participants for future studies regarding language cues that work best when attempting to reach Muslim communities. Where other campaigns may focus on the individual benefits in taking part, our study informs us that collective benefits of taking part should be stressed.
It was observed that in our sample, Black Muslims were least likely to take part, with a 20.9% willingness to take part in health research. This ethnic group was also the highest (35.8%) to have expressed uncertainty regarding their participation in health research. This is consistent with findings from NHS Race & Health Observatory, which looked at 12 papers and studies related to attitudes to help-seeking in which Black African and Black Caribbean individuals stated that a prevalent reason for their lack of willingness to participate was due to racism, healthcare professionals not understanding what racism is, and its subsequent negative impact on participating or help-seeking (13).
When we look at willingness to participate by age, gender and ethnic group, we see that the most concerned about risks are Muslim men, Muslims aged 25+ (61% of over 45s are willing to participate, compared with ~50% of those between 18-34), and Muslims of African or Caribbean descent. The differences between each minority group’s reasons, as well as the variance of willingness amongst different age groups, suggest there is a multitude of barriers to participation and that ensuring full representation of different ethnic groups is not just a case of encouraging individuals to take part.
Much of the analysis above leaves the question of ‘why’ unanswered, which means that, to achieve a better understanding, further research is required. Taking a qualitative approach in the future would allow for more explorative questions to be asked and to collect a richer dataset that may unearth underlying motivations and beliefs that underpin attitudes that British Muslims have.
Trust and understanding key to improving research participation
In our survey, participants were asked about what they think would help increase levels of participation in health research. Participants said they would be more likely to participate in health research if they were familiar with the institution researching, if the research study had been reviewed by a research ethics committee, and if the study benefited the development of medicine in society more broadly.
Most ethnic groups apart from Black African, Black Caribbean and Asian Muslims (of which the vast majority are from the Indian subcontinent) of other ethnic groups had high confidence in participation if the research study was conducted by an institute, they were familiar with, such as the NHS or medical universities. Black African and Caribbean Muslims in particular gained confidence in participation if the study had been reviewed by a research ethics committee, whilst Asian Muslims of other ethnicities would be more likely to participate in the health study if it benefitted themselves or their family.
Interestingly, the report suggests that many Muslims are more likely to be interested in participating in research if it benefitted others as well, which means that whilst most Muslims may not have previously participated in health research, there may be a strong foundation on which ethnic minority participation can be built, if trust and transparency can be ensured.
In summary, to improve participation in health research from Muslim communities, communication and engagement should focus on the benefits for wider society, whilst also appreciating inter- and intra-cultural and ethnic diversity. Thinking that Muslim communities are homogenous, and that the same approach will work for all, will only fail to truly serve and engage the diverse Muslim communities in the UK and fail to bridge the data gap that exists in genetic research.
The need for a national conversation about genomics
22% of Muslims stated that they are familiar with the concepts of DNA, genetics, or genomics, with most viewing the study and research of DNA, genetics, or genomics in healthcare positively. This is broadly in line with the general population, where around 25% of people in the UK say they are familiar with genetics or genomics (14). This suggests that overall, more work needs to be done to engage the general public on genomics, not just Muslims.
Whilst familiarity with genomics was consistent across age and gender, there was reasonable divergence amongst ethnicities. Just 14% and 15% of Bangladeshi and Indian Muslims were familiar with genomics, compared to 33% of Arabs, and 34% of ethnicities in the “Other” category (mostly comprised of Mixed and White populations). This may be due to differences in the educational backgrounds of those who were raised outside of the UK, or difference in social mobility levels found between ethnicities.
Most Muslims have a positive attitude towards genomic research and development, with 68% of Muslims viewing the study and research of DNA, genetics, or genomics in healthcare positively (40%) or slightly positively (28%). The data suggest a positive correlation between familiarity with genomics and attitude – Muslims familiar with genomics were more likely to view the study and research of genomics as positive. For example, Indian and Bangladeshi Muslims were least likely to have a positive attitude towards genomics at 30% and 34% respectively, and they were the ethnic group who said they were least familiar with the concepts.
It can therefore be suggested that if efforts are undertaken to reach out to communities and increase levels of awareness about genomics, then this will naturally lead to more positive attitudes towards it, and, in turn, greater participation in genetic research. It is interesting to note that our study suggests that a general awareness of genomics is sufficient for positive engagement to occur, and there is not necessarily a need to educate people on the intricacies of how genomics works as a science. Success can be achieved when communication focuses on the uses of genomics in healthcare and on the benefits which it can bring about. This is certainly an area Genomics England is already keenly interested in, as part of creating a national conversation about genomics.
Concerns exist but there is a willingness to take part
When seeking information about genomics, the Muslims in our survey mostly trusted mainstream, verified sources such as the NHS website, or their GP and other healthcare professionals - most importantly for their reliability, and secondly for accessibility and ease of use. A much lower proportion of respondents relied on family and friends, although this was largely in cases whereby the respondent’s family members were doctors, or health professionals themselves. A small minority of respondents went to religious figures, and those that did largely seem to utilise this source to enquire about Islamic rulings, rather than scientific information.
Based on our findings, it is key to note that efforts to raise awareness of genomics via mainstream sources is reaching Muslim communities and should be continued. In addition to this ongoing work, we should think about how best to start conversations about genomics between friends and families, and within religious and other culturally important spaces. If awareness of genomics with these members of society can be improved, then it can hopefully lead to a significant difference in awareness and engagement with genetic research overall.
Meanwhile, it is clear that cultural competency – the importance of understanding, communicating, and interacting with people from across and within cultures – is a key aspect of participation in health research. There is also a responsibility that 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.
Although concerns exist, such as those related to data protection and historical misgivings with previous research studies, much can be done to increase the trust of Muslims in the UK so that they feel comfortable in taking part in genetic research. Much hope lies in the fact that we know that there exists a willingness to take part, with a majority of those we surveyed having positive sentiments towards genetic studies. This is ultimately good news for us and will help drive our plans to improve engagement amongst Muslim communities within the UK.
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