Genetic screening and diagnosis during pregnancy: What are the experiences of Black women and their families?
Advances in technology and the embedding of genomics into mainstream care in England’s NHS have given rise to studies exploring parental attitudes towards genetic testing in pregnancy. Few studies, however, have explored views from parents from different cultural and ethnic groups undergoing these tests during pregnancy. Understanding these views is important as there are clinical and psychological implications for parents who receive a prenatal diagnosis, as well as limitations to the tests that need consideration.
The views of Black people especially are underrepresented in this area of research, with little work attempting to understand the acceptability and accessibility of these tests for parents from these communities. This is problematic because Black women and their babies reportedly have poor maternal and neonatal outcomes in the UK, knowing little about their attitudes and decision-making processes at a potentially pivotal stage in pregnancy. Better understanding of the experiences and support needs of Black women and their families who have been offered prenatal testing is required. By focusing on the views and experiences of Black women, it also speaks to the NHS’ long term plan to tackle health inequalities in maternity services and responds to improving the inclusion of Black women in research studies.
Taking a mixed methods approach, this project will use a clinical audit of selected NHS Fetal Medicine Units to examine the offer and uptake of prenatal genetic tests across different ethnic groups, as well as a survey, interviews and focus groups with Black women, healthcare professionals, and those working in relevant parent support organisation to explore experiences of and attitudes towards these tests.
The findings will be used to develop information for parents, training for healthcare professionals, and materials that will improve access to parent organisations for people from Black communities who might seek support for their prenatal testing decisions. Discussions with Black women about the barriers to participating in studies will also inform recommendations for researchers on how to engage Black communities in maternal health and genetics research studies.