Black parents' experiences of genetic testing in pregnancy
Research type
Research Study
Full title
Genetic screening and diagnosis during pregnancy: What are the experiences of Black women and their families?
IRAS ID
336150
Contact name
Michelle Peter
Contact email
Sponsor organisation
Great Ormond Street Hospital NHS Foundation Trust
Duration of Study in the UK
2 years, 6 months, 0 days
Research summary
Black women face greater risks in pregnancy than women from other backgrounds. Research looking at prenatal tests for genetic conditions rarely includes the voices of Black women, so we know little about their experiences. We need to understand the social and cultural needs that might be unique to Black communities so we can improve antenatal care for all women. The aim of this project is to look at Black women’s experiences of prenatal testing and make recommendations to improve care. To do this, we will first compare whether the number of women who are offered and who accept prenatal testing differs across ethnic groups. Then, using interviews, we will explore the attitudes and experiences of Black women and professionals towards prenatal testing. Parents and professionals from parent support charities will be asked to share ideas about how these organisations can best reach out to women and families from Black communities. We will put these findings together to develop training for healthcare professionals around counselling and support so that the needs of all who are offered prenatal testing, including Black women, are addressed. The findings will also be used to create materials that will improve access to parent organisations for parents from this community who might seek support for their prenatal testing decisions. In addition, discussions with Black women about the barriers to taking part in research studies will inform recommendations for researchers on how to reach and include more people from diverse backgrounds. Most importantly, this project will amplify the voices of a group often unheard. By listening to those who experience ethnic health inequalities, this project will offer ways to ensure that Black women and their families are offered culturally sensitive maternity care.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
24/PR/0558
Date of REC Opinion
22 May 2024
REC opinion
Further Information Favourable Opinion