Are People From Black Communities Proportionately Represented in UK and US Studies Examining Views on Screening and Diagnostic Genetic Testing in Pregnancy? A Scoping Review.

Abstract

Several studies have explored parent and public perspectives on screening and diagnostic genetic testing during pregnancy (prenatal testing). Little is known about how much people from Black communities have contributed to this research. To examine whether Black people's views on prenatal testing are proportionately represented in UK and US studies. Searches were conducted in Medline (Ovid), PsycINFO (Ovid), CINAHL Complete (EBSCOhost), and Emcare (Ovid). Primary experimental UK and US studies examining parental and public perspectives on prenatal testing, published between 2014 and 2024. After duplicate removal, titles and abstracts were independently screened by two reviewers. Full texts were then obtained, and data were extracted for analysis. Seventy-six studies were included. 83% (n = 63) included Black participants; only 39% (n = 30) reported a sample meeting the respective national Black population. More studies in which Black participants met the population were from the UK (UK: 69% vs. US: 42%), though this difference did not reach significance (OR = 1.53; 95% CI: 0.52, 4.48; p = 0.431). Black participants were better represented in studies exploring views on prenatal testing for sickle cell than those on non-invasive prenatal testing and genomic technologies. Whilst important for our understanding, efforts to include Black participants in studies examining views on prenatal testing should not be limited to those where the condition primarily impacts this population. Improved representation of Black people across a wider range of studies is essential for supporting health equity and minimising health disparities.