Barriers and facilitators to genetic testing for breast and ovarian cancer amongst Black African women in Luton (UK)

Abstract

Evidence suggests that although Black African women have the lowest incidence of breast and ovarian cancer, they have the highest mortality rate and low rates of uptake for cancer screening services for these conditions in the United Kingdom (UK). This study aimed to explore the perceived barriers and facilitators to genetic testing for breast and ovarian cancer amongst Black African women in Luton (UK). We conducted a qualitative study that included one face-to-face and five telephone focus group discussions. Consistent with the health belief model, a focus group discussion guide was developed. A total of 24 participants, aged 23–57 who self-identified as Black African women and who were English speakers residing in Luton, took part in the focus group discussions. Purposive and snowballing sampling were used to recruit the participants for this study. The focus group discussions were recorded, transcribed per verbatim, coded and analyzed using an inductive thematic analysis approach, and the findings were classified. Nine themes emerged from the narratives obtained including six barriers and three facilitators. Barriers to genetic testing included (1) Cost and affordability, (2) Lack of knowledge, awareness, and family health history knowledge, (3) Language barrier, immigration, and distrust in western healthcare services, (4) Fear, (5) Cultural, religious, and intergenerational views and perceptions, and (6) Eligibility for genetic testing for the BRCA1/2 pathogenic variants and a lack of referral to specialist genetic clinics. Facilitators to genetic testing included (7) Availability of tests cost-free under the National Health Service (NHS) (8) Family members' health and (9) Awareness and education on genetic testing. The barriers and facilitators identified could enable policy makers and healthcare services alike to gain a better understanding of the factors influencing Black African women's decision-making process toward genetic testing. Ultimately, this work can inform interventions aiming to increase the uptake of genetic testing among this group.