Paper short abstract:

Drawing on qualitative research with UK members of public, this presentation interrogates the ‘implicit normativity’ (Cribb, 2020) of the contemporary discourse on diversity and inclusion in genomic research.

Paper long abstract:

The lack of diversity in datasets used for genomic research is increasingly recognised as an urgent ethical issue, leading to biases in the clinical translation of emerging biomedical knowledge and the exacerbation of existing health inequities. As calls have multiplied to foster the inclusion of under-represented communities in research, some (cf. Epstein, 2007) have criticised the folding of wider issues of health inequities into a narrow definition of diversity (usually intended as diverse genetic ancestry). Little attention, however, has been paid to how the parameters of the problem are negotiated in practice.

In this presentation, we examine the ‘implicit normativity’ (Cribb, 2020) of the contemporary debate on diversity and inclusion, exploring what emerges as a matter of explicit ethical concern (cf. Latour, 2005), and what remains unquestioned. The presentation draws on a focus group study with 100 participants from ethnic minoritised and socio-economically disadvantaged communities, exploring their views on communication strategies commonly used to invite marginalised groups to take part in genomic research.

Comparing and contrasting participants' responses with the professional debate on diversity and inclusion’ we illustrate how the latter both responds to and shapes the experiences of the communities it aims to include. While it contributes to foreground issues of justice that had long remained marginal in the bioethics debate, the contemporary discourse also 'contains' (cf. Cribb. 2020) the problem of diversity and inclusion in ways that continue to exclude important concerns of those currently under-represented in research.