Black parents’ views and understanding of prenatal genetic testing: a cross-sectional survey of attitudes, knowledge and trust in UK healthcare

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IntroductionPrenatal screening and diagnostic genetic tests (prenatal testing) for a range of genetic and chromosomal conditions are integral components of maternity care, allowing parents to manage pregnancy decisions, plan for neonatal care and prepare for their baby’s potential health needs. In England, prenatal testing is delivered through the National Health Service Fetal Anomaly Screening Programme (NHS FASP) [1] – a population screening programme, which offers all pregnant women blood tests and ultrasound examinations to estimate the likelihood of genetic and chromosomal conditions. This includes universally offered screening for thalassaemia, common aneuploidies, and fetal anomalies, as well as targeted screening for sickle cell. If results indicate an increased chance of a condition, diagnostic testing can provide definitive information, though these procedures carry both clinical [2] and psychological impacts [3, 4]. Thus, while early detection offers benefits, a positive or uncertain result can also cause anxiety and decisional conflict [5, 6]. High-quality counselling is, therefore, essential to the ethical delivery of prenatal testing. Midwives typically lead initial discussions about prenatal screening and consent, whilst fetal medicine specialists, clinical geneticists, and genetic counsellors may become involved if an increased chance result or anomaly is identified. Although testing pathways and guidance are nationally specified, there are differences in local workforce capacity and access to specialist expertise [7], meaning that the content and delivery of prenatal testing discussions, and the support available to parents, may vary between local services.In this context, ensuring equitable prenatal counselling and support is urgent, as racial inequalities mean Black women consistently face disproportionately poor maternal outcomes. Three times more likely than White women to die during pregnancy or shortly after [8], Black women are also at increased risk of stillbirth [9], neonatal death [10], and severe maternal morbidity [11]. While often linked to socioeconomic disadvantage [12, 13], structural racism plays a central role in reinforcing these disparities [14, 15], with Black women reporting racially discriminatory behaviour from healthcare professionals (HCPs) during pregnancy, which shapes their perception of care [16,17,18] and engagement with maternity services [19]. These experiences, alongside wider social determinants [20, 21], highlight the pressing need to address inequities in maternity care.Despite their disproportionate risk, little is known about Black parents’ attitudes and knowledge of prenatal testing. Our recent review of 76 UK and US studies on perspectives of prenatal testing found Black participants were rarely included at levels proportionate to national birthing populations [22]. The result is a critical evidence gap in how Black parents navigate the range of testing options offered in routine maternity care. This issue is particularly important in the UK, where prenatal testing is universally offered within a publicly funded healthcare system, and inequities in knowledge or uptake cannot be explained simply by differences in financial access.The limited research that has focused on Black parents suggests that attitudes towards prenatal testing are shaped by a complex interplay of personal experience, cultural values, and trust [23]. Evidence also indicates that Black parents may experience higher levels of distress following a fetal anomaly diagnosis compared with parents from other ethnic backgrounds [24], further underscoring the importance of culturally responsive counselling and tailored support.Beyond decision-making and emotional responses, understanding of prenatal tests amongst Black parents remains a crucial but underexplored aspect. To our knowledge, no studies have examined what UK Black parents know about the tests offered through the NHS, or how this shapes their decisions. This gap is particularly concerning given evidence that Black women in the UK are more likely to access antenatal care later in pregnancy [25] and receive fewer checks and scans than women from other ethnic groups [26]. As genomic medicine expands within routine care, this lack of evidence risks further widening health inequalities.To address this issue, this study used a cross-sectional survey to explore Black parents’ attitudes towards, and knowledge of, prenatal testing in the UK. This study forms part of a larger project that also includes qualitative interviews with Black women about their prenatal testing experiences. Together, these approaches aim to drive the development of equitable services responsive to the communities most at risk.Subjects and methodsStudy designThis cross-sectional online survey examined attitudes towards and knowledge of prenatal testing amongst Black parents living in the UK.Participants and recruitmentParticipants could take part if they: (i) self-reported (using UK census categories) as Black, Black African, Black Caribbean, Black British, or mixed Black heritage; (ii) were aged over 18 years; and (iii) had been pregnant within the UK in the past five years. The survey was hosted on the survey platform REDCap and ran from 15th March 2025 to 15th August 2025. Recruitment used purposive convenience sampling via a cascade approach. Parent and pregnancy organisations, alongside Black-led community groups targeted towards Black parents, advertised the study and shared the link to the survey through their online communities and social media networks. Participation was voluntary. An information sheet preceded the survey, and participants explicitly provided consent to take part.Ethnicity was self-reported using UK census categories. We use the descriptor “Black” throughout this work, though we acknowledge that this label does not capture the cultural and experiential diversity within Black communities.Survey development and patient/public involvementSurvey development was guided by the study’s Patient and Public Involvement Advisory Group (PPIAG) comprising a genetic counsellor, representatives from parent support organisations (including Black-led groups), and Black parents with lived experience of pregnancy and prenatal testing. MP, an experienced researcher in maternal health, prenatal genomics, and survey design, developed the survey from a literature review and findings from in-depth interviews with 39 Black mothers offered prenatal testing [27]. PPIAG members reviewed draft questions for clarity and cultural sensitivity, suggesting refinements to reflect the experiences of Black parents in maternity care. A midwife known to the first author further verified knowledge-based items for accuracy with NHS prenatal testing guidelines. The survey was piloted with 10 people (not included in the final analysis) and feedback was incorporated prior to survey launch.The final survey (Supplementary information) included closed-response items addressing: 1) Attitudes towards and willingness to undergo prenatal testing; 2) Factors influencing decision-making around prenatal testing; 3) Medical mistrust; 4) Perceived and objective knowledge of prenatal tests; 5) Demographic characteristics (optional for all participants).MeasuresAttitudes towards prenatal testingParticipants read a description of prenatal screening and invasive diagnostic testing before being asked about their attitudes towards these tests. Attitudes were measured with four Likert-scale items (1 = strongly disagree, 5 = strongly agree), adapted from previous research [28], and summed to create total attitude scores.Medical mistrustThe Group-based Medical Mistrust Scale (GBMMS) [29], a validated 12-item measure, assessed perceptions of race-based inequities in healthcare. The term ‘healthcare professional’ replaced the term ‘doctor’ to reflect UK maternity care, which includes midwives and doctors. Items are rated on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree); higher scores indicate greater medical mistrust. The scale produces a total score and three subscale scores: Suspicion, Group-based Disparities, and Lack of Support from Healthcare Professionals.Knowledge of prenatal testingItems examining perceived knowledge of genetic terminology were informed by previous research [30] and assessed familiarity with and understanding of four words: ‘DNA’, ‘chromosome’, ‘gene’, and ‘genome’. Multiple-choice questions, developed by MP, assessed objective knowledge of prenatal tests, and were scored correct/incorrect. Each set of objective knowledge questions was preceded by a short description of the relevant test and how it is offered within the NHS, followed by a brief hypothetical scenario.Data analysisDescriptive and inferential statistics were reported. Internal consistency of the GBMMS was assessed using Cronbach’s alpha. One-way analysis of variance (ANOVA) and Kruskal–Wallis tests assessed group differences, and post-hoc pairwise tests were conducted when omnibus tests were significant. Spearman’s rank-order correlations assessed associations between ordinal or non-normal variables. Effect sizes were reported as eta squared (η²) for ANOVA and correlation coefficients (ρ) for non-parametric associations. Statistical significance was set at p