How acceptable is it for HIV positive African, Caribbean and Black women to provide breast milk/fluid samples for research purposes?

BACKGROUND: The African, Caribbean and Black communities have been found to be reluctant to participate in health research in North America. This is partly attributed to historical experiences as well as their cultural beliefs. Cultural beliefs about the uses of breast milk/fluids could further hinder the participation of African, Caribbean, and Black communities in research involving the collection of breast milk/fluids samples. METHODS: We conducted 17 in-depth interviews and three group interviews (n = 10) with HIV+ African, Caribbean and Black women living in Ontario, Canada to explore their cultural beliefs about breast milk/fluids and their acceptance of participating in research that involves the provision of breast fluid samples. STUDY DESIGN: Qualitative study involving in-depth interviews. RESULTS: Our respondents believed that breast milk/fluids should be used for infant feeding and for curative purposes for a variety of children’s health ailments as well as ailments experienced by other family members. The cultural belief that breast milk/fluids could be used to bewitch the baby and mother and the perception that it is intrusive (equating breast milk/fluids research to DNA testing), could prevent African, Caribbean and Black women from participating in research involving the collection of breast milk/fluids. Despite these fears, some respondents expressed that they would participate if the research results would benefit them directly, for example, by finding a cure for HIV, enabling HIV+ mothers to breastfeed, or contributing to developing new drugs or vaccines for HIV. Women’s recommendations to facilitate successful recruitment included giving incentives to participants, and employing a recruiter who was trustworthy, informed, and culturally sensitive. CONCLUSION: Cultural beliefs could present barriers to recruitment and participation of Africa, Caribbean and Black communities in health research involving breast milk/fluid samples. Successful recruitment for future studies would necessitate researchers to be culturally aware of the beliefs held by African, Caribbean and Black women, to build trust, and use an appropriate recruiter. While the findings relate to breast milk/fluids, the suggested recommendations for facilitating recruitment of research participants from these communities may be useful to consider when recruiting ethnically and culturally similar participants for research involving biological samples. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13104-016-2326-6) contains supplementary material, which is available to authorized users.