Diverse Data

Some populations, primarily those of African ancestry, are more genetically diverse than others. More data is needed from these highly diverse groups in order to come to robust scientific conclusions.

Health datasets for research purposes are growing around the world. Benefits of having a single database which is population-wide, includes better data and a more streamlined process for researchers. Generally, those of non-European ancestry tend to be represented within bio- and tissue- banks at a lower rate than they are population statistics. In order to support scientific research, Genomics England attracts data to the National Genomics Research Library through the NHS, as well as academic cohorts. We are aware that many of the communities we serve have lower trust levels in healthcare professionals which could be exacerbated by data collection for research purposes. In addition, some communities who do have high trust levels in the NHS, report low trust levels when told their data will be used for purposes outside their healthcare.

Much of the financial investment in research comes from developed countries, outside of East Asia, where those of genetically diverse ancestry are less prominent. Innovation need from developed countries tends to focus on those of European ancestry as this is where overall burdens of health and population need lies. Thus, research on genetic conditions which affect those who are not ancestrally prominent within developed countries tend to be less well financially resourced.

Academics based in developing countries are less likely to gain funding to conduct research as they have less opportunities to apply, and grant sizes are smaller. They are however more likely to focus on developing therapies for these population groups as they conduct research in countries where there is a higher proportion of those who are non-European.

Health policy bodies including the World Health Organisation have noted concern about access to precision medicine by developing countries. Demand for therapies and medications for these population groups are lower due to their price point. Developing countries are unlikely to be able to afford them at current rates, thus demand for their development is lower.