Trust, control, and the ethics of representation: a qualitative study of UK Black women’s perspectives on prenatal testing, genetic data use, and genetic research participation

As genomic technologies become increasingly embedded in prenatal care, ethical questions about governance, trust, and equitable representation are becoming more urgent. Yet Black populations, who remain underrepresented in prenatal testing research and genomic datasets, are rarely centred in these debates, limiting equitable application and understanding of how these technologies are experienced. This study explored how Black women evaluate prenatal testing, including their views on test value, genetic data storage and reuse, and participation in genetic research. Semi-structured interviews were conducted with 39 Black women in England who had been offered further prenatal testing after a high chance screening result, anomalies on scan or haemoglobinopathy screening. Interviews explored women’s broader experiences of prenatal testing; however, the focus of this paper is on four domains: (1) perceived value of prenatal testing; (2) views on receiving additional findings from prenatal genomic sequencing; (3) opinions on genetic data storage and reuse; and (4) motivations for participation in genetic research. Data were analysed using reflexive thematic analysis. Three themes were derived from the data; (1) Conditional trust and the ethics of accountability : Trust rested on perceived prenatal test reliability, transparency, and institutional integrity; (2) Boundaries of knowledge and control : Women negotiated what knowledge they wished to receive from prenatal genomic testing, balancing preparation against emotional burden, and expressed parallel concerns about control once genetic data were shared; (3) Representation , exclusion , and the burden of responsibility : Participation in genetic research was often framed as advocacy to improve test accuracy for future Black families, though some acknowledged fatigue at being expected to correct systemic inequities. In this study, Black women’s perspectives on prenatal testing and genetic research participation were shaped by awareness of racialised structural inequities, histories of exclusion, and concerns around accountability. Achieving equity in prenatal care and across genetic and genomic research requires clear communication about the benefits, limitations and uncertainties of prenatal testing, accountable data governance, and meaningful community involvement in the design and implementation of research beyond diversifying datasets.