Abstract
Calls have been made for researchers prospectively and continuously to engage study communities. If done, this typically occurs through a specific research study or collaboration. Rarely are community mores examined in-depth with an eye towards understanding implications for research ethics policy processes. We describe a qualitative study designed to understand local community values, beliefs and practices that relate to research ethics in Botswana and explore how communities would want their interests represented. Through focus group discussions across two different selected ethnic communities and in-depth interviews with paramount chiefs, we highlight a range of community values and expectations that represent concrete behavioral representations of respect and trustworthiness. Communities are willing to engage in the process of enhancing research and research ethics policies and procedures. We invite future research and training that seeks to connect local conceptualizations of substantive and procedural aspects of research ethics.
Keywords: research ethics, community values, respect, trust, community engagement, Botswana
INTRODUCTION
The past decades have seen a growth in volume and complexity of biomedical research in many less-resourced countries, including several in Africa (Glickman et al., 2006). This in part reflects the emphasis of the international response to an ever-growing burden of disease on the continent. For instance, countries in Sub-Saharan Africa have continued to battle with high HIV prevalence rates; Botswana has a particularly high rate (17.4%) (UNAIDS, 2018). However, development of local ethics and regulatory frameworks and capabilities to effectively oversee such research has, in many countries, not matched this growth. Research ethics in Africa is often informed by three core ethics principles of beneficence, justice and respect for persons, which are reinforced in international guidelines and declarations that specify these principles and articulate other requirements for the ethical conduct and review of research (Belmont Report, 1979; Council for International Organizations of Medical Sciences (CIOMS), 2016; Declaration of Helsinki, 2013).
Dependence on international guidelines, however, has raised concern amongst some that local contextual and cultural factors that can impact the ethics of research may not adequately be accounted for in research conducted in many African communities (Ndebele, 2011). For example, some including Mkhinze (2011), have argued that one common representation of respect for persons, individual informed consent, “…is based on the concept of independent or individualistic personhood. This may be problematic in societies with a communitarian view of personhood as is often the case in Africa” (p.1). Consequently, some scholars have proposed that ‘Western’ informed bioethics should be replaced on the continent by an ‘African bioethics’ informed by African philosophies (Andoh, 2011; Bhrens, 2013; Fayemi & Akintunde, 2012; Feyemi & Macaulay-Adeyelura, 2016; Tangwa,1996). At the same time, other scholars have argued for a harmonization of ‘African’ and ‘Western’ constructs, with a goal of strengthening the conceptual underpinnings of both traditions. For example, Ssebunnya (2017) suggested that “rather than pursuing a distinct African bioethics, African bioethicists and philosophers would do well to elucidate the universalizability of communitarian traditional African thought - and thus enrich the content- thin concept of the common morality - for the benefit of bioethics as a whole” (p.30). Barugahare has also argued that thoughtful analysis should be provided to determine how well-suited existing international principles of ethics are to the African context, suggesting that merely a superficial focus on how they were generated is short-sighted (Barugahare, 2018).
The recognition and integration of ‘African’ values into bioethics and research can only be possible if researchers and other stakeholders are aware of and willing to respect the cultural norms, beliefs, and practices of the diverse range of African communities with which they interact (Onnouba, 2007). As Emmanuel, Wendler, Killen & Grady (2004) argued, cultural norms, beliefs, and systems of governance present in local communities must inform the application of ethical principles. While these debates are relevant, they are limited in their influence as there remain underlying empirical gaps in understanding related to the degree to which community and cultural values and beliefs about health research in Africa are unique to different contexts and settings. There remains interest in systematic engagement with local communities to generate a better understanding of community values, which might inform local tailoring of ethics guidelines (Castelano, 2004; Fregonese, 2018; South African San Institute, 2017).
To ensure culturally sensitive research, consultations and engagement with individuals who are well informed about local cultural norms and beliefs remains integral and is supported by several international guidelines (Council for International Organizations of Medical Sciences (CIOMS), 2016; Fitzpatrick at al, 2017; Kamuya et al, 2013). In Botswana, some empirical, conceptual and practical contributions have been made in this regard; notably, Barchi et al (2015) explored Institutional Review Board (IRB) members’ perspectives on the collection, use and storage of biospecimens. One issue that surfaced in their study “was the consensus across groups that there was a general lack of trust in research and, by extension, in researchers themselves. Foreign researchers were viewed with greater distrust than local researchers” (p.4). Scholarly literature has also identified moral concepts in Botswana that may have broad application in research (Gaie & Mmolai, 2007; Steyn, 2012). These scholarly pursuits could benefit from additional research that directly identifies the values, beliefs, and practices of a diverse range of individuals from communities in Botswana. Their perspectives on how particular ‘ways of being’ could be aligned with the practice and oversight of research in the country is highly valuable to the goal of ensuring culturally sensitive and ethically appropriate conduct of research. Finally, some efforts have been made in Botswana to integrate community voices in research and health policy processes. For example, the Ministry of Health and Wellnesses has emphasized the importance of social accountability mechanisms and people-centered services in its recent National Guideline for Implementation of Integrated Community-Based Health Services (2020). It has introduced community advisory boards in many health Districts and has required inclusion of community representatives on IRBs in the country, including the National Health Research Development Committee (HRDC) the body that oversees all health-related research in the country. While these procedural developments are important, they could be even further enhanced by attempts to identify and describe substantive values and practices that are perceived to be important among diverse groups of community members in the country.
This study seeks to identify cultural traditions and mores in Botswana that are relevant to research, in part, to support community-oriented ethical conduct of research. To the best of our knowledge, this is the first qualitative study conducted with members of communities in Botswana to understand local community values, beliefs and practices that relate to research ethics, and explore how to facilitate incorporation of such views into research ethics policy processes.
METHODS
Research design
This study adopted a qualitative approach, employing a multiple case study design to explore local community values, norms, and beliefs within real-life context (Yin, 2003) and to allow analysis of data within and across different study communities (Baxter, 2008). Data were collected through focus group discussions involving two different ethnic communities in Botswana, and through in-depth interviews with a single paramount chief from each.
Description of study participants and sampling
To ensure some representation of both predominant Setswana and non-Tswana speaking tribal groups, this study sampled one ethnic community group from the nine Tswana speaking groups, and one from the seven non-Tswana speaking groups in the country. The two groups were the predominant Setswana-speaking Bakwena ethnic group from Molepolole, situated in the Southern part of Botswana (population of 67,598), and the predominant non-Tswana speaking Bakalaka ethnic group from Masunga, situated in the North Eastern part of the country (population of 5,696) (Statistics Botswana, 2011).
Ethnic community groups are led by paramount chiefs viewed as the main custodians of cultural norms and traditions. A purposeful sampling method was used to recruit the two paramount chiefs of the selected ethnic community groups to participate in semi-structured in-depth interviews. We also sought to identify four groups of village representatives for focus group discussions. Individuals who reside in villages or wards in Botswana are led by “headmen” who report to the paramount chief on behalf of their communities. A purposeful sampling method was used to recruit groups of headmen from each village for participation in discussions. Headmen helped to identify initial contacts within each of the three other study groups, who were then contacted for further snowball sampling within each group. This approach facilitated recruitment for groups of elderly persons, traditional healers, and young adults. Elderly persons were sampled as they were considered to possess a wealth of knowledge related to their community’s long-standing cultural values, norms, and belief systems; traditional healers were included as they continue to practice traditional healing in many communities in Botswana and were thought to possess a unique perspective on health research; young adults were included as they often find it necessary to bridge multiple value systems. Each groups discussion was homogenous according to the sampled community role. See figure 1 for depiction of study participant groups according to data collection methods.
Figure 1.
Study participant groups and data collection methods
Instruments
There were two main data collection instruments. The first was a demographic sheet that collected basic participant information such as gender, ethnicity, age and whether they have prior research participation. The second was a semi-structured discussion guide that was developed to facilitate data collection during in-depth-interviews and focus group discussions (the guide was identical for both modalities). The guide was informed by literature and developed by the research team (SK-K, JA, and GG). Domains relevant to this analysis included: community values, beliefs, and practices perceived important to the ethical conduct of research in Botswana; and the implications of these values and beliefs for research ethics policy processes. Several questions, probes and examples were developed for each domain. The guide was improved through practice interviews, which resulted in a few adjustments, including changes to some items to clarify meaning and addition of some examples.
Data collection
Data for the main study were collected in the villages of Molepolole in August and September 2019, and Masunga in December 2019. Following informed consent, demographic information was collected using information sheets. Focus group discussions lasted approximately 1 hour 30 minutes and were conducted in meeting rooms within the villages; in-depth interviews with chiefs took up to 1 hour each and were conducted in their offices. Using the semi-structured guide, a study team member (SK-K) asked open-ended questions that promoted dialogue and allowed participants to share their views. Simple yes/no questions were avoided. Participants were encouraged to share and discuss related issues of importance to them even if it departed from the guide. Probes were used to refocus participants responses to the guides where necessary. Impressions from early focus group discussions informed subsequent discussions, especially in terms of areas in need of further probing or confirmation. This was also the case for the two interviews. The data collector maintained a neutral stance and avoided expressing her own views to allow participants to share theirs. A research assistant helped with taking notes. All interviews and group discussions were audio recorded to facilitate data analysis. They were conducted in Setswana as all participants, after being asked, preferred to converse in this language. Participants were each given 30 Botswana Pula (~$3 USD) as token of appreciation for participation and were provided with light refreshments.
Data analysis
With the help of the research assistant, SK-K initially transcribed the audio recordings in Setswana to preserve semantic meaning as much as possible. Initial thematic analysis was conducted by two Batswana project team members (SK-K & DJ) in the local language to search for underlying themes emerging from the data (Bryman, 2004). Two Batswana project team members independently read transcripts in Setswana then generated themes and a list of potential codes to support the themes. Most were derived inductively. They then compared the themes and potential codes and discussed to reach a consensus. Once themes and codes were manually identified and assigned to content in Setswana, several direct quotes for each theme and subtheme were translated from Setswana to English to facilitate further discussion and analysis within the full study team. Two other non-Setswana speaking project team members (JA & GG) read the translated thematic codes and quotations in English and shared their impressions. Following this, the full data set in Setswana was reviewed again, and some themes and codes were adjusted and re-associated with content to achieve a coding consensus within the full study team. Themes that emerged from focus group discussions and in-depth interviews within each community were compared to identify any striking similarities and differences between the two selected ethnic groups. Similar emerging themes across ethnic groups were treated as common values, norms, and beliefs. Data collected during the pilot phase were not included in the final analysis.
Ethics considerations
The study was approved by the Institutional Review Boards (IRBs) of the Johns Hopkins University Bloomberg School of Public Health (USA) and the University of Botswana. Permission to collect data from local communities was also obtained from the Botswana Ministry of Local Government and Rural Development. Permission to conduct the focus group discussions and in-depth interviews were sought and obtained from paramount chiefs in Molepolole and Masunga as required. Individual informed consent was obtained from each participant as well as permission to audio record the discussions.
RESULTS
Participant characteristics
A total of eight focus group discussions (four in Molepolole; four in Masunga) and two in-depth interviews (one with the paramount chief of each village) were conducted. Of the 48 participants, three-quarters were male and two-thirds had not previously participated in research. Slightly more headmen and young adults participated, compared to other groups in both Molepolole and Masunga (Table 1).
Table 1.
Demographic characteristics of focus group discussion and in-depth interview participants
Variable | Frequency | Participation by ethnic group and community role | Frequency |
---|---|---|---|
Gender | Bakwena | ||
Male | 32 | Headmen (FGD) | 9 |
Female | 16 | Elderly Persons (FGD) | 5 |
Age Category | Traditional Healers (FGD) | 4 | |
18–29 | 9 | Young Persons (FDG) | 7 |
30–39 | 6 | Paramount Chief (IDI) | 1 |
40–59 | 10 | Bakalaka | |
60–69 | 12 | Headmen (FDG) | 7 |
70–79 | 6 | Elderly Persons (FDG) | 4 |
80 and over | 5 | Traditional Healers (FDG) | 3 |
Previous Research | Young Persons (FDG) | 7 | |
Participation | Paramount Chief (IDI) | 1 | |
Yes | 12 | ||
No | 36 |
NB: N = 48; FGD =Focus Group Discussion; IDI= In depth Interview
Values, beliefs and practices local communities perceived important for researchers to adhere to in Botswana
Focus group discussion and in-depth interview participants identified several ethical values, beliefs and practices as important for researchers to address when they conduct research within communities in Botswana. These can generally be viewed as expressions of how to demonstrate respect and trustworthiness. Participants also identified some implications for research oversight systems in the country.
Respect
Focus group discussions and in-depth interviews participants from both ethnic community groups spent a significant amount of time discussing the importance of showing respect towards their communities, as a unit, and how researchers can demonstrate respect. This took several forms, including respect for decision-making practices (e.g., gatekeeping) and respect for other widely followed cultural practices.
Respect for gatekeeping as a cultural norm
Participants from the two ethnic community groups referenced the gatekeeping process as an important aspect of their culture, and the roles of paramount chiefs (dikgosikgolo) as gatekeepers in their communities. Participants were of the view that researchers must seek consent from paramount chiefs prior to engaging community members in the research process. This entails initially consulting someone who will introduce the researcher to paramount chief who will facilitate community participation in the research if s/he considers it worthy or beneficial to the community. The view was shared by older and younger adults alike.
The first thing that researchers must do is to show respect for Setswana culture by presenting themselves to the chief… they are supposed to seek permission from the chief before they conduct any form of research in the community. Doing this will be to respect the chief and his community (Elderly Person, Masunga).
However, directly approaching the Chief with research requests was considered a violation of norms. The local term for consultation (therisanyo) was used regularly by participants from the two ethnic community groups to characterize a process through which stepwise engagement ought to occur. A considerable amount of time was spent discussing the need for researchers to go through headmen (dikgosana) when individuals want to consult with the Paramount Chief, a Setswana cultural practice meant to protect the chief from external harm.
In the Setswana culture it is a standing procedure that whenever a person wants to come and consult with the chief for whatever reason, even for research, that person present themselves first to the village headmen who must present the person before the chief. This is done to protect the chief (Elderly Person, Molepolole).
Several participants stated that community consultation is also essential to protect researchers, as ‘outsiders’, from the communities they are approaching. For instance, they may lack knowledge on taboos (meila) associated with cultural practices and processes which may lead them to some unexpected harm. Consultations were therefore viewed as mutually beneficial.
It is imperative for researchers to know and understand our cultural practices for sometimes lack of knowledge of what to do, to avoid, when and how to do it sometimes can lead them to problems they did not expect, sometimes even not being able to conduct their research because they did not adhere to certain cultural practices (Traditional Healer, Masunga).
Respect for other cultural beliefs/practices
Participants from the two selected ethnic communities elaborated the need for researchers to be aware of, understand, and respect community beliefs and practices. Participants perceived their beliefs and practices to be symbolic of their culture and indicated that observing them would promote good working relations with researchers. Paramount chiefs characterized this in general terms.
It is important for researchers to understand community ways of living and their belief systems to promote good and sustainable relations with the community (Paramount Chief 1).
Taboos
Traditional healers from the two groups also expressed the need for researchers to know and understand some of the Setswana cultural taboos and gave specific examples of such.
There are several things that researchers must know of and respect when they enter communities. First, researchers must respect Setswana taboos. For example, when they visit homes with new nursing mothers for research purposes, they must respect our culture and wait outside for some time to ‘cool their feet’. This is done as a cultural practice to safeguard the life of a newly born baby from harm (Traditional Healer, Masunga).
Participants also expressed concern for using body parts or specimens for research purposes. The need to return them back to the owner after research remained a predominant preference amongst participants. It was recommended that if taken for research purposes they must be given back to the owner or relatives for proper cultural burial or disposal. Traditional healers from both groups shared these sentiments.
I am of the view that some things are hidden taboos. For example, when a human body part has been taken from the owner for whatever reason, even research, such part must be returned to the owner or their relatives for proper burial/disposal. This will prevent the dangers that may occur because of not burying the specimen in accordance with the Setswana taboos, beliefs, and culture (Traditional Healer, Molepolole).
We hear that in the Western medicine specimen are collected to determine the cause of the disease. For example, when a patient has cancer their specimens such as breasts are removed to assess the level of the cancer. But in traditional healing it is a taboo to take specimen from patients. We only use our traditional “bones” to talk to the “gods” to ascertain what could be the problem and are able to detect the problem and heal without collecting specimens as it is a taboo to do that. Therefore, specimens collected must be returned to their owner (Traditional Healer Masunga).
Proper dress code
Almost all participants voiced their concerns about cultural disrespect by individuals who dress inappropriately, especially when they come to the traditional court/meeting place (Kgotla). Some youth also indicated that proper dress code must be adhered to even in the community in general. Many were concerned about women wearing trousers and short dresses that expose their knees and regard such a practice as disrespectful.
Dress code must be acceptable across all members of the community. Trousers that women wear are a sign of disrespect, unless if they are worn by uniformed women officers like police/army. Women must wear dresses and cover their heads with head scarfs and cover their shoulders with light scarf, men must wear a jacket and must not put on a hat/cap. These types of conduct symbolize respect for Setswana culture (Elderly Person, Masunga).
Acceptable greeting practices
Almost all participants from the two ethnic community groups attested that culturally acceptable greetings (go dumedisa) symbolize good conduct. These greetings must be done in ways that are acceptable at the community and family level and are required to show respect. However, there were slight procedural differences in greetings between the two ethic community groups. Mostly the difference was based on the language and process. For instance, the Bakwena emphasized the need for young people to bend their bodies when greeting the elderly, and to use the word sir/madam (rra/mma) referring to men/women. The Bakalaka on the other hand indicated that for them, respect is shown by a person who does not greet them while standing up. When the visitor enters a home he/she must wait to be given a chair if it is a man, or a mat if it is a woman, to sit down and that is when they can proceed with their greetings. If they do not wait to be seated they will appear to be combative.
The main way of showing respect according to Sekwena is to greet other people. To greet elderly persons is a sign of respect. The greeting must be done well. You say good morning sir/madam with a bent body, especially younger person to the elderly or those in authority like Chiefs. This type of conduct will make it possible for communities to realize that researchers recognize and respect the community. A man must take off his hat when greeting. This in turn will make the community cooperate with researchers more easily when they receive this type of respect (Elderly Person, Molepolole).
Polite language
Participants indicated they are most likely to participate in health research in an environment where there is a display of good manners particularly when there is use of ‘polite language’. In Setswana culture, polite language is that which is considered acceptable, accommodative, and non-judgmental in discourse between community members and researchers. It implies that respectful language should be used and maintained even in instances where differing viewpoints are expressed. Participants viewed the use of polite language as an important ethical community value meant to show respect.
Researchers must understand the language of the community. Language shows how people think, it gives people their identity and how they want to be respected; therefore, researchers must use polite language that will not hurt the community, let them use language that will bring goodwill (Paramount Chief 2).
Trustworthiness
There was considerable discussion amongst participants from the two ethnic groups regarding the need for trustworthy and honest researchers who would share with community members the focus of the research as well as any benefits that might accrue. Some were concerned whether research might focus on sensitive issues which would demand more trust. Many participants were concerned about whether researchers could be trusted with handling body parts or specimens in a manner that respected cultural beliefs. Others were of the view that trust can only be attained if it is conveyed through the chief.
Honesty is a very difficult thing, but we still value an honest person. A researcher can show honesty in many ways. Like we have said, we can trust a researcher who first presents himself to the chief. We will trust a researcher who shows respect to our cultural norms and adheres to community way of doing things (Elderly Person, Masunga).
Although participants were not directly asked how they want researchers to inform them of study findings, some focus group and in-depth interview participants identified reciprocity an important community value. Participants were of the view that researchers must be aware of and understand that reciprocity has cultural significance. For these reasons, it was expected that if communities share information with researchers, in return researchers would be trusted to do the same by sharing findings or giving something back that will benefit the community.
Health research can be of value to the community only on condition that results are shared with the community to inform them on how the research can improve their lives (Young Person, Molepolole).
Participation in research ethics policy processes
Participants were asked to highlight some of the measures that can be put in place to help ensure the community values, norms and beliefs raised are reflected in research and research ethics policy processes in Botswana. Focus group and in-depth interview participants, especially those in leadership and the elderly, highlighted two factors they considered important.
Culturally informed research regulatory systems
Participants indicated that there is need to generate culturally informed regulations that can guide research in the country. This, according to participants, can be achieved by inviting customary leaders such as paramount chiefs and headmen, as well as the community at large, to make inputs into the process of generating research governance requirements. Participants expressed the need for the Kgotla system to be involved in the generation of research regulations and that chiefs be allowed to take a leading role in the process.
It is very important to ensure representation of chiefs when [creating] laws that inform research process within communities. This will help protect communities from any form of abuse from researchers as well as help preserve community norms (Headman, Masusnga).
Let there be regulations that guide research processes. These must be written and implemented. Let community leaders like chiefs take a leading role in generating culturally sensitive research regularly laws (Headman, Moleplole).
Community education
Participants reached consensus in identifying the need for educating communities on the nature of research and ethical research processes in order to support their agency in relation to research and research ethics policy engagement. The consensus was based on the realization that some community members may not be well informed about what research is, and how it ought to be conducted in accordance with cultural norms. Some also indicated that even though they are conversant with their values, they have never thought of considering them in the context of researcher conduct, hence the need for community training in research.
This discussion has shown me that as communities we are not well informed on procedures researchers must follow that are informed by our culture. This is because we do not have a clear understanding of what research is and which one is acceptable for communities. We need to be trained in research (Headman, Masunga).
DISCUSSION
We expected views meaningfully to diverge across the two different ethnic groups sampled for this study; however, the opposite was largely the case. Some of the core value-laden expectations that emerged in this study across both communities included gatekeeping by paramount chiefs (Dikgosikgolo), the need for community consultation (to protect both communities and researchers), and the importance of showing respect for a range of cultural beliefs and practices. Signs of respect included being sensitive to community taboos (meila), using acceptable language, making appropriate greetings, following dress code, meeting expectations for trustworthiness, conforming to procedural requirements for accessing the community, and appropriately handling (and returning) biological samples (dirwe tsa batho).
We also noted a widely held belief amongst study participants that the research regulatory and policy environment in Botswana should itself be culturally sensitive and informed by traditional deliberative processes. For example, it was thought important that community leaders play a central role, through the Kgotla (a traditional system for community court-like meetings that are meant to support social harmony and solidarity) in capturing and sharing local cultural recommendations for ethical research conduct. These recommendations could presumably be shared with those who have power within and control over the country’s current research ethics systems and policies. More generally, a clear desire was expressed for increased efforts to help educate communities on research and research ethics to support community empowerment and engagement.
Our findings converge with the literature in several ways. Viewing paramount chiefs as important gatekeepers and custodians of cultural values, and the Kgotla as a flexible mechanism to realize community representation, resonates with Moumakwa (2010) who described chieftainship (bogosi) as being enshrined within the traditional value system that contributes to peace and democracy in Botswana. Moumakwa (2010) also notes that consultation (therisanyo), which is mostly done at the Kgotla level within villages, continues to be an important feature of public administration in Botswana. Related notions are also supported in literature from other contexts; for example, several authors and well-known guidelines have suggested that consultation and engagement with local individuals who are well informed about cultural norms and beliefs is integral to demonstrating respect for local communities, particularly indigenous communities. (Council for International Organizations of Medical Sciences (CIOMS), 2016; Fitzpatrick et al., 2017; Jones, Bush & Macauly 2014; Trust, 2018). We note, however, participants in our study did not raise concerns about the potential for community gatekeepers to influence decisions made by individuals in ways that may be problematic, as has been noted in some of the literature from other countries (Tindana, Kass & Akweongo, 2006).
The identified need to respect community beliefs including by being sensitive to taboos, such as understanding traditional child birthing beliefs, echoes research by others in countries, for instance Nepal (Kaphle, 2013), and Northern Iran (Roudsari et al., 2015). Similarly, the need to return specimen and body parts to donors after research, which was viewed as culturally important, has been noted in another research from Botswana (Barchi, et al., 2015). The importance of “donors” retaining an interest in specimen and body parts was similarly voiced by study participants in neighboring South Africa (Moodley et al., 2014). Indeed, the need to consult communities to understand their cultural beliefs as they relate to their use in research has been raised in many countries around the world (Abukhaizaran et al., 2017). There is also an emphasis in the literature on communicating with participants to give feedback on study findings and how specimen and body parts are being used in research (Tindana et al., 2020).There is evidence to suggest that failure to identify and observe behavioral manifestations of respect during the conduct of research can be perceived as research misconduct, and result in significant disputes. For instance, the San Community in South Africa has directly challenged researchers who have used terms like “Bushman” to characterize members of their community, or who show arrogance towards community leaders, these concerns led to the development of the San Code of Research Ethics (Callaway, 2017).
Early conceptualizations of respect for communities emphasized the need for researchers to respect community culture, knowledge, and experience. These conceptualizations can be informed by studies, such as this, which seek to capture the voice of communities and their recommendations for how that voice can be amplified. We identified a range of community values and expectations that represent concrete, largely behavioral representations of respect and trustworthiness. We also identified a willingness of communities in Botswana to engage, through traditional Kgotlas, in the process of enhancing research and research ethics policies and procedures. Finally, we found study communities to welcome the opportunity to engage in activities that could enhance their research and research ethics literacy. We invite future research that seeks to connect local conceptualizations of substantive and procedural aspects of research ethics.
BEST PRACTICES
Findings from this study can inform efforts to enhance research oversight systems and approaches in Botswana and elsewhere. They may be particularly relevant to National research oversight committees such as the Health Research Development Committee (HRDC) which oversee, review, and approve research conducted within the country. Institutional Review Boards (IRBs) across Botswana can also benefit as, to date, they have largely had to depend on their own internal understanding of ethics-related values and procedures as they work to apply and specify international guidelines, such as the Declaration of Helsinki (2013) and the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects (2016). Like many other countries, Botswana faces challenges with maintaining informed and engaged community representatives on its IRBs. Globally, even committees with reliable community representatives acknowledge limitations on the ability of those members to represent the range of community values and interests that exist in diverse societies. While somewhat limited in its scope, our study found a relatively high degree of homogeneity of views across two ethnically distinct communities in Botswana and identified an opportunity and strong willingness to use traditional mechanisms for community deliberation and engagement to inform the localization of research ethics policies and procedures in the country. We believe this to be an important insight that speaks to the potential for Botswana to play a central role in advancing global understanding of how to meet the numerous calls for incorporating principles of respect for communities and processes for community engagement in research (Emmanuel et al., 2004; Fitzpatrick et al., 2017; Jacquez et al., 2013; Jones et al., 2014; Kamuya et al., 2013; Molyneux et al., 2005; Weijer & Miller, 2004). This could be done proximal to the implementation of a large study (as is often the case), or, as we would recommend, as part of a continuous and ongoing process of discovery and feedback into a local research ethics system.
RESEARCH AGENDA
Early conceptualizations of “respect for communities” emphasized the need for researchers to respect community culture, knowledge, and experience. These conceptualizations can be informed by studies, such as this, which seek to directly capture the voice of communities and their recommendations for how that voice can be amplified. Our findings demonstrate the importance of qualitative inquiry to engage local communities in the process of thinking about ethics- and research-related concepts and expectations. Future research might include further probing of local community perspectives on issues related to the collection, use, and storage of specimen and body parts for research purposes. There is also need for research investigating how local communities would want to see their values and interests incorporated into research ethics review processes in Botswana. This would benefit from parallel data collection with other key stakeholders such as IRB members, policy makers, community health leaders and others to further examine how local community values and beliefs can be effectively integrated into research ethics processes. Finally, further exploration of the extent to which community values across various parts of Africa align with international principles of research ethics is encouraged. This work could help to ground the ongoing largely theoretical debate on the need for a distinct "African Bioethics" (Barugahare, 2018).
EDUCATIONAL IMPLICATIONS
Local communities want to be empowered on matters relating to research and research ethics so they can more effectively contribute to local and national systems for research governance. Efforts are needed to guide the co-development of community-level activities that help further inform members of the nature of research and research ethics. Lessons from the field of community-based participatory research (CBPR) can be examined and perhaps generalized to support development of educational materials and approaches that lend themselves to application across diverse sets of learners outside of a particular research context or traditional educational setting. Reference can also be made to research ethics guidelines that promote respect for indigenous communities when conducting research, such as the San Code of Research Ethics (2017) and the Ethical Conduct in Research with Aboriginal and Torres Strait Islander Peoples and Communities: Guidelines for Researchers and Stakeholders (2018). Training modules for researchers and IRBs could also be developed, at a country or community level, to support sensitization of researchers and others to local mores. These modules can be incorporated into existing research ethics training requirements or be recommended by institutions responsible for issuing research ethics approvals, when relevant and applicable.
LIMITATIONS
Data for this study were collected from two selected ethnic communities, and specifically from community leaders, elderly persons, traditional healers, and young persons. Future research seeking to deploy a similar approach might consider inclusion of religious leaders, who often play an important role in the establishment, interpretation, and maintenance of ethical values. Further, although our findings showed more similarities than differences across two different and well-known ethnic groups, more research could be pursued in Botswana to understand the perspectives of other ethnic groups in the country to provide a more comprehensive perspective. In addition, participants did not share their perspectives on the role and function of IRBs, and we did not probe specifically on this topic. As such, we are limited in what we are able to recommend from our findings for IRB practice. Future research could potential focus on this area, exploring existing and perhaps new models for integration of community perspectives into the ethical review process. Lastly, we had hoped to be able to recruit members of Village Extension Teams (VETs) from both communities as they represent a broad cross-section of the population. VETs serve to represent community interests in their interactions with local and national institutions in Botswana and consist of a diverse group of members, including Village Development Committee members, heads of schools, parent-teacher association members, police officers, social workers, and village clinic nurses/doctors. Their inclusion would have been valuable to capture additional aspects of implementation with respect to translation of local values into research ethics systems, however given the diversity of the group and demands of their daily lives, recruitment for this study, which was attempted, proved to be too difficult.
ACKNOWLEDGEMENTS
We greatly appreciate and thank community members and leaders who participated in this study. We also extend our thanks to Nancy Kass, Adnan Hyder, Diana Mendoza-Cervantes, Victor Zulu, John Barugahare and Mary Kasule for their support.
FUNDING
This study was conducted with support from the Fogarty International Center of the U.S. National Institutes of Health under award number D43TW010512. The views expressed are those of the authors and do not necessarily represent the U.S. National Institutes of Health
Footnotes
DECLARATION OF CONFLICTS
The authors declare no conflicts of interest.
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