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.
**Lay summary of study results: Black women in the UK experience some of the poorest pregnancy and birth outcomes of any ethnic group. Despite this, very little research has explored Black parents' experiences of prenatal testing. Prenatal testing includes the tests offered during pregnancy to find out whether a baby may have certain genetic conditions. Understanding how Black parents experience these tests is important if maternity services are to provide care that is fair, supportive, and meets the needs of all families.
The aim of this study was to understand Black parents' experiences of prenatal testing in England and identify how maternity and genetic services can better support families.
The study involved five parts: a) previous research was reviewed to see how well Black communities have been represented in studies about prenatal testing; b) analysis of NHS maternity records was carried out to find out whether there were differences in how prenatal testing was offered and taken up; c) a survey involving 110 Black parents was carried out to understand what they knew about prenatal testing and how they felt about the different tests offered during pregnancy; d) 39 Black women were interviewed about their experiences of prenatal testing; and e) 30 healthcare professionals, including midwives, fetal medicine doctors, and genetic counsellors were interviewed to find out their experiences of providing prenatal testing.
The review of previous research showed that very few studies had focused specifically on Black parents' experiences of prenatal testing. Although Black people were included in some research, they were often not represented in proportion to the number of Black families using maternity services. This highlighted an important gap in knowledge and reinforced the need for research focusing on Black parents' experiences.
The review of NHS maternity records found that Black women were more likely than women from other ethnic groups to decline further testing after an initial screening result. They were also more likely to have the later pregnancy screening test rather than the earlier one, which may suggest that some women are accessing maternity care later in pregnancy and therefore have fewer testing options available. The review also showed that hospitals record information in different ways, making it difficult to compare services and identify inequalities consistently.
The survey found that most Black parents supported prenatal testing, but there were gaps in understanding about some of the tests offered during pregnancy and how conditions such as sickle cell disorder are inherited. Parents who had lower levels of trust in healthcare services were also less likely to report accepting prenatal testing, showing how important trust is when supporting families to make decisions.
The interviews with Black women showed that most parents valued prenatal testing because it helped them prepare for the future and make informed decisions during pregnancy. However, many also described feeling unprepared for difficult conversations, unsupported at key moments, or judged because of assumptions made about them. Parents said that being listened to, treated with kindness, and having healthcare professionals who understood their individual needs made a significant difference to their experience.
The interviews with healthcare professionals showed that staff were committed to providing good care for all families. However, many explained that busy clinics, limited appointment times, and the increasing complexity of genetic testing made it difficult to always provide the personalised support that families needed.
Overall, the findings show that improving communication, building trusting relationships, providing culturally sensitive care, and making information about prenatal testing easier to understand could help make services fairer and better support Black families.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