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

There is evidence that racial and ethnic minority groups are sometimes reluctant to be involved in health research. This is partly attributed to historical experiences as well as their cultural beliefs [1, 2]. For example, cultural beliefs among the African, Caribbean and Black (ACB) populations about the uses of biological samples, specifically breast milk/fluids, could hinder recruitment of participants in this kind of research. While blood, urine, saliva and organ tissue samples are collected from participants for research purposes, [3] we hypothesize that ethnicity and cultural beliefs may influence the acceptability of ACB women to provide their breast milk/fluids for research purposes.

The collection of biological samples from people living with HIV has, and continues to contribute to our understanding of the disease and finding a cure. Most of the studies to date have focused on blood, urine and tissue samples. However, since only 15% of infants who are breastfed by HIV-positive mothers become infected with HIV [4], there is now increasing interest in studying breast milk/fluids. Studies suggest that the majority of babies who do not become infected despite repeated, high and consistent exposure to the virus in the breast milk could be protected by immune factors in the milk. Human milk contains a wide variety of relatively uncharacterized innate immune factors and some (e.g. lactoferrin) have been shown to have anti-HIV activity. Characterizing the levels of specific innate factors in human milk or breast milk/fluids may potentially inform HIV vaccine development. Determining whether innate factor levels in human milk correlate with postnatal HIV transmission or account for the protective benefits of exclusive breast feeding would necessitate collecting and studying breast fluid samples from multi-ethnic HIV-positive and negative mothers. The presence of people from different ethnicities within Canada would provide researchers the opportunity to explore how the innate factors within the breast milk/fluids vary (if at all) across different ethnic groups. Understanding these variations could potentially inform the development of a vaccine that would be effective across different ethnicities. However, there might be cultural barriers that might discourage ethnic women’s participation [5, 6].

Findings from studies that have explored the influence of ethnicity and culture on enrollment in any kind of health research are somewhat conflicting. ACB communities in the USA are less likely to participate in health research and clinical trials compared to other ethnicities due to historical experiences of racism and discrimination and unethical research practices [7, 8]. Shavers-Hornady et al. [9] found that distrust, poor access to care, lack of active recruitment, alienation of minority doctors, lack of knowledge and cultural beliefs influence the involvement of African American participants in health research. Sheikh et al. [10], who explored the willingness of South Asians to participate in an Asthma study, found researcher attitude, stereotyping, logistical challenges and poor understanding of the research to be important factors. In addition, Hughes et al. [11] found that cultural beliefs hindered African American women from participating in genetic risk assessment studies, while Corbie-Smith et al. [12] reported mistrust of the medical communities as a barrier for these populations to participate. Contrary to these studies, however, Filippi et al. [13] and Wendler et al. [14] found no statistical significant differences in willingness to participate in health research between different ethnic groups.

While this literature is informative, none of the studies focus on research on breast milk/fluids among HIV+ ACB women [15–20]. We chose to recruit ACB women because according to the literature, they are more likely to breastfeed their children and hence, in cases where they cannot breastfeed (e.g. when infected with HIV), they would stand to benefit most if there was a breakthrough in developing a viable vaccine. A study that explores the acceptability of HIV+ ACB women to provide breast milk/fluid samples would inform researchers who might wish to collect breast milk/fluids, or other biological samples from these populations.

This was a qualitative study involving 17 interviews and three group interviews (n = 10). The group discussions were used to validate the findings from the interviews, and explore some of the related sensitive topics e.g. criminalization, that arose from the interviews. Both the individual and group interviews were conducted by a trained research assistant (RA) and the Principle Investigator (LK) both of whom were female and of ACB background. There was no relationship between the researchers and the participants. This paper is part of a larger project that was informed by a phenomenology theoretical framework. The larger project explored the lived experiences of HIV+ ACB women making infant feeding choices. The themes of women’s acceptance of using breast milk/fluids for research emerged during the interviews and data analysis [21].

All the respondents and group participants, with the exception of three, were immigrants from either Africa or the Caribbean. Their ages ranged from 30–60 years (all with the exception of two, were below the age of 40, and had children within 10 years prior to the study).

The results section is organized in the order of the study objectives. Illustrative quotes from the interviews are provided, where appropriate. Synonyms used include: G: Group Interview (I, II, III); R: Individual interview (numbers were arbitrarily assigned).

ACB communities have been found to be less willing to participate in health research. This study contributes to this literature by examining the cultural beliefs of HIV+ ACB women about the acceptability of providing breast milk/fluids for research. To the best of our knowledge, this is the first study that addresses this issue within Canadian and similar contexts.

The finding that some of the respondents would find it unacceptable to provide breast milk/fluid samples was closely connected to their cultural beliefs that breast milk/fluids should be used to benefit the infant or family members. The belief that breast milk/fluids can be used as a medium for witchcraft could be a potential barrier that researchers might need to address to facilitate ACB women’s involvement in such research. However, within contexts where anonymity is ensured, this belief may have less impact. In contexts where anonymity cannot be assured, trust needs to be established.

Cultural beliefs are not the only potential barriers to HIV+ ACB women’s acceptability of providing breast milk/fluid samples. In high-income countries where HIV+ women are not allowed to breastfeed their babies, women may experience psychological and emotional distress about providing breast fluid samples [24]. The acceptance of these women, in spite of this, to participate could be interpreted in several ways; first women might view the potential benefits of the study (e.g. enabling them to breast feed) to outweigh the potential distress. Additional explanations include women’s awareness of the role that research plays in facilitating the discovery of drugs to treat HIV. The other explanation could be fear. Since the participants were immigrant women, there might be the belief/expectation that they have to participate in research that is hosted in their host country to be considered “good citizens”, or else face consequences [25]. The third explanation could be the possibility of getting money for participating in research. These explanations could be applicable to similar studies even if they may not involve HIV+ women, and raise ethical concerns that are beyond the scope of this paper.

It was surprising that our respondents did not identify historical experiences with research as a reason for their reluctance to participate in research since the literature about research among ACB highlights this as a barrier [2]. It is possible that most of the respondents were immigrants who may not be aware of the negative history of research on ACB populations in North America. Conversely, as the participants reported, they trusted the Canadian system to protect their rights, which is a positive finding.

The practical recommendations that the respondents made to facilitate a culturally sensitive study were realistic and congruent with the current literature—trust between the researcher and the communities involved is very critical to these populations [26]. Successful recruitment of participants from these communities hinges on whether or not they trust the researcher (and the person recruiting the participants). Confidentiality, though relevant in all studies involving human participants, may be more critical to HIV+ ACB populations since revealing their HIV status may result in partner violence, stigmatization and isolation [27].

The respondents’ recommendations for the recruiters’ attributes should be considered when soliciting the participation of these communities. However, the examples of such a person provided, i.e. someone who is sensitive to their cultural and social contexts, and the involvement of health workers, is somewhat contradictory and raises concerns. There was disagreement among women as to whether the culturally similar person should come from their communities—and be known to them; or whether this person should be sensitive to their culture and understanding but not necessarily be from their communities. The dilemma here was balancing the benefits of being culturally understood and remaining anonymous. These findings emphasize the need to observe cultural sensitivity and confidentiality in research. Where peers are used, this should be emphasized. However, for people who may not be comfortable disclosing information they consider to be sensitive such as their HIV status to the immediate peers, it may be useful to consider using peers from other locations; this way, participants can maintain their anonymity.

While discussing culture, the difference between culture and ethnicity should be noted. Just because someone is black does not mean that they hold the same cultural beliefs and practices as all the other black people [28]. As well, it is faulty to assume that just because someone is of a certain ethnicity they understand the cultural beliefs and values held by the group they are researching. In addition to training in the basic principles of research, peer researchers need to be aware of the cultural beliefs that are relevant to their study populations.

This paper identifies the cultural beliefs about the use of breast milk/fluids for research. While participants showed interest in participating in such a study, the cultural beliefs that the mother and baby could potentially be harmed through the fluids and fear of being “exposed” could hinder their participation in such studies. Understanding these cultural beliefs (and the historical context of research in these populations) and using them as a basis to foster common understanding between the communities, researchers and health workers would be useful in reaching these communities.

To the best of our knowledge, this is the first study that explores cultural beliefs with regards to research that uses of breast milk/fluids within the Canadian context. While the focus was breast milk/fluids; the findings of the study shed light on cultural beliefs that may be applicable to research involving collecting other bodily samples such as blood, and body tissue. The practical recommendations for collecting bodily samples, for instance, having a culturally sensitive, knowledgeable and trusted person at the frontline, the need for educating communities about the research, the need for incentives to motivate participants, and the importance of ensuring confidentiality, are useful to any researcher who might want to collect biological samples at the community level. While the current literature is full of the need to have culturally aware health care providers, we argue that cultural sensitivity is equally relevant in the context of health research. Researchers and their research assistants need to have knowledge of the cultural values (relevant to their research topic) of the populations they wish to investigate, before conducting their research.

This is an exploratory study that points to important findings with regards to the participation of one minority group in research. There is need for similar research with representative samples of respondents.

This was a qualitative study, involving a small sample of respondents. While the results may not be generalizable, they provide insight to a specific issue and could be applicable to similar populations. The study findings should also be interpreted with caution since we interviewed people who contacted us and expressed their interest in participating in our study. The sample might represent a biased population that regularly participates and is very knowledgeable about research, and hence, may not be representative. However, the use of posters is one of the standard ways of recruiting study participants. Furthermore, our initial results were presented and validated by a wider group of ACB women living with HIV, some of whom did not participate in the study.