Exploring Race, Diversity and Genomics

As social scientists, engagement experts and genetic counsellors working at the intersection between science and society we believe passionately that genetics research should serve society, all of society. Our work around race, diversity, representation and inclusion supports the Connecting Science ambition to open up genomic science for everyone.

In our research and engagement, we strive to include and represent public voices from the whole spectrum of society and are mindful that societal attitudes towards genetics are very varied. We are also aware of the historical context that modern day genetics research and clinical services sit; and the reality that many public audiences experience discrimination as a consequence of inequity of access and lack of inclusion in genomic datasets and also genomics policy.

In genomic studies, human data are often grouped into populations, which means that genetic differences between and within groups can be explored. Although there are many ways to organise and label human data, genetics has a long history of using categories of race, ethnicity, and genetic ancestry. In our research, we are currently exploring how social justice (doing the best for society) is part of grouping human data in genetic research.

Categories of race and ethnicity can have different meanings in different contexts and self-identification may be different to how scientists have historically categorised us. There is no biological basis for socially constructed categories of race and ethnicity and we recognise that by grouping genomic data by ‘ethnicity’ this in of itself has been (and is) used to divide and discriminate between minoritised communities. Importantly when and how these groups and categories are used is related to unequal benefits of genomic medicine. While theories of eugenics are often thought to be ideologies of our past, they continue to circulate and contribute to the inequality we see in society. Our work seeks to use science and social science to dismantle and counter ideas of racial inequalities. Both overt and systemic forms of racism affect who is represented in genetics research, how that research is taken up and by whom. We want to ensure that our science and its applications are shared equitably with communities across the world to improve people’s health and their environment and thus we are committed to dedicating time to investigate and address inequalities in representation in, and access to, genomic science, and by doing this we are choosing to take positive action to address racial inequity.

We are part of a wider research community within Wellcome Connecting Science that is committed to taking ongoing, positive actions which address racial inequity through training, workforce development, the research environment, and our research outcomes.