Both biomedical and life style approaches to the search for new treatments of HIV and AIDS could benefit from at least two of the contemporary ‘omics’ technologies: genomics and metabolomics. Genomics is concerned with the study of the genomes of organisms. Metabolomics entails the investigation of the metabolome of organisms, which represents the collection of the low molecular weight metabolites of the biochemical processes in a cell, tissue, organ or organism. Metabolomics has been shown to be a new and promising approach to the study of inherited metabolic (Reinecke et al. 2012) and infectious pathological disorders (Parida & Kaufmann 2010). Metabolomics and genomics research on HIV and AIDS would be aimed at the development of new techniques for early diagnosis and therapeutic interventions, for example through a healthy diet, nutritional supplements or other applicable approaches, including monitoring of treatment (Fawzi et al. 2004). Such research can contribute to defining a strategy for personalised medicine (Van der Greef, Hankemeyer & McBurney 2006), amongst others for those suffering from serious conditions such as HIV infection.

However, the application of the fundamental genomics and metabolomics research in clinical practice would require clinical research involving human subjects from whom samples of bio-fluids such as blood saliva or urine should be obtained, as well as detailed personal and clinical information from the participants. Such investigations with human subjects raise several concerns about ethical and scientific issues, especially in dealing with communities with wide disparities in education, economic and social standing, as well as diversities in national policies and practices in health care and human rights systems (Glickman et al. 2009).

In our view, the application of metabolomics research on HIV faces at least two critical issues related to the attitudes and perceptions of the people supposed to benefit from such research, including semi-rural black communities. Firstly, many people in South Africa are reluctant to have themselves tested for HIV and to give consent to the gathering of information and sampling required for this category of investigations (Mills 2006; Pretorius, Goldstein & Stuart 2005; Williams et al. 2012). Research amongst certain populations thus clearly underscores the importance of participants’ perceptions for the possible benefits of research and projected interventions (Corbie-Smith et al. 1999; Garber et al. 2007). An important question, therefore, is this: How can it be communicated to prospective participants that the research really intends to benefit them, thereby furthering their participation?

Secondly, the introduction of new modern technologies will provide information to the participants about their genetic vulnerability to the development of AIDS after HIV infection, as the genetic predisposition of responders and non-responders to HIV infection and therapy is well established (Piconi et al. 2011). Such personal insights could negatively affect the individuals’ self-perception and their social position, for example through a process of stigmatisation (Gordon et al. 2005:1047; Michie, Bobrow & Marteau 2001:519; Stempsey 2006).

Against this background, it is imperative that possible genomics and metabolomics investigations into HIV are carried out in a way that embodies the ethical obligation to prevent possible deleterious experiences and social consequences of such research and its results. How can this be done?

This article seeks to attain insight into possible ways of applying advanced biomedical techniques in semi-urban black communities in an effective and ethically sound way.

The investigation of those attitudes and perceptions requires at least the beginning of a model of the relationships between personal and socio-cultural factors and communal and individual behaviour. Such a theoretical model was developed from philosophical and natural science perspectives (Jochemsen & Reinecke 2011) and improved with interaction in a multi-disciplinary group of participants at a conference on Philosophy, Technology and Society (Maarssen, the Netherlands 2010), as well as through anonymous peer reviews. The model is outlined in Figure 1, on the next page.

The model in Figure 1 was adopted by the authors since they adhere to some of its implicit philosophical views, especially with respect to the view of humankind. The human being is considered to be religious, relational and responsible. The first attribute pertains to the idea that human beings invariably understand themselves in relation to what they consider to be ‘unconditionally non-dependent reality’ (Clouser 2005); for many people, this is their religious belief. In this view, behaviour is, in some way, always influenced by the person’s religious and worldview beliefs that inform their perception and understanding of reality and make sense of life. This behaviour also concerns the acceptance of new techniques and the adoption of scientific models as correct representations of reality (Clouser 2005; Van der Walt 2001:43–62). The human being is considered to be a relational being, meaning that life is lived in communities, not just as a precondition for survival, but as a necessary context for becoming human and flourishing as a human. Thirdly, in our view, human beings are responsible. Although individual human life and behaviour is influenced and shaped to a large extent by the community and its culture and customs, these do not fully determine the individual’s life. People, created in the image of God, have an undeniable responsibility for their own life and for their close relations and their community at large. History shows that, time and again, people have been able to break through the conventions of their community and deal with situations considered to be unjust or undesirable. The social research reported in this article starts from the presupposition that people’s behaviour, both in established customs and in actions that challenge those customs, is influenced by their fundamental beliefs and their spiritual and moral attitudes, and sees this confirmed in the results.

The investigation reported in this article was informed by the model of Figure 1 in the sense that this model helped to formulate the kind of questions we had to ask in order to get the type of answers we sought. The model should not be read in a deterministic way as if the factors indicated in the model fully determine the behaviour of each individual of a certain community. Circumstances do differ and are valued differently by different people, and values are also generally shared in the community. Hence, this research does not aim to predict individual behaviour but to understand the kinds of factors and motives that influence the behaviour of people from a certain community.

FIGURE 1: A model of external and internal influences on individual behaviour.

The first contact with the participants took place at the Top City Clinic in Ikageng through the intermediation of the manager, who confidentially asked possible participants whether they were willing to participate. HIV-negative participants were selected from the people who came in for voluntary counselling and testing (VCT) on the days the interviewer was at the clinic. Before giving their consent to being introduced to the interviewer, the post-testing negative participants were informed by the manager what the study entailed. As a result of the selection, interviewees represented a diversity of involvement with HIV and AIDS. Amongst the participants were HIV-positive and HIV-negative individuals, a community leader, nurses, counsellors and traditional healers from a clinic in the black township of Ikageng in Potchefstroom, South Africa. Some participants were interviewed in a private room at a health clinic, others in their homes. The interviews generally took one hour each.

To enhance the quality of the data collection, the interviews were recorded (by tape recorder and subsequently transcribed) to ensure precise recollection of data and to provide the researcher with an objective document with which to analyse the gathered information.

In the process of the interpretation of the data, we first tried to obtain an understanding of the different factors that influenced the attitudes and perceptions of the target group regarding their possible involvement in genomics and metabolomics research. In addition, we related the observations to the model (Figure 1) that informed the questions with the intention of validating and possibly revising the model. Although a validation or a revision of the model was not a direct goal of this research, the results could possibly be used also to realise that.

To the question about what cultural values or customs with respect to health were maintained in their community, the responses varied from traditional healing (6 responses), ancestors (4 responses), curses, and witchcraft, to God and spiritual powers. In general, the participants held a positive view of traditional healers. Ten participants indicated that they play an important and positive role, 3 participants pointed out the role of traditional leaders in giving training with regard to HIV and AIDS, but a few participants indicated they would not personally consult a traditional healer, partly due to their churches’ teaching. The medical doctor had a negative view of their role and said, ‘The role that I have seen them play is that people first go to them and, by the time they get to the hospital, they are about to die.’

Two healthcare professionals asserted that HIV-positive people should start taking antiretroviral (ART) drugs. The traditional healers’ view differed from established medical opinion; one mentioned curses as a cause of HIV and the other that AIDS was a consequence of having sex with a widow who was not cleansed after her husband’s death. To them, the ritual of cleansing the woman would be the best prevention.

Some participants and the traditional healers viewed traditional healers as the best fighters of AIDS. This appeared to have a cultural background. One participant answered to the question of whom he would consult about health issues: ‘Traditional healers, because this thing is mostly amongst black people, and we know our people’. Somebody else stated, ‘Traditional healers, especially amongst black people; white people do not know black medicine’. Others opted for medical doctors as the best AIDS fighters, ‘… because they came up with ARTs, whereas traditional healers have not come up with anything’.

The view that traditional healers and medical doctors should collaborate was widespread amongst the participants, if only for strategic reasons: ‘Because it is obvious that our people consult with them [traditional healers]’. However, the traditional healers and the medical doctor did not favour collaboration, although one traditional healer would do so conditionally: ‘But there shouldn’t be others who are superior to others’.

All the participants considered that their cultural traditions did not allow the use of condoms, but half of them rejected their tradition in this respect: ‘Condoms are Western things, and it changes our tradition, and we use them as we get urbanised’. Others wanted to uphold tradition: ‘Our tradition does not stand for adultery so, if you respect that part of tradition, you should not have a problem with condom use and tradition’.

It is generally understood that consistent use of condoms protects against HIV and AIDS. People found condoms easily accessible (at clinics, pubs or public toilets), also for young people. Some participants remarked: ’You even find young children playing with them as balloons’. However, feelings of shame as well as cultural customs might prevent them from actually getting the condoms (Pithey & Morojele 2002). A participant said:

‘… it is very difficult for a grown man like me to go and fetch a condom while people are looking. … I think that something should be done to create easy access’.

It was generally known that confidential HIV tests are possible at a clinic or at VCT mobiles. A majority of the participants (9 participants) had had an HIV test, some of them because of feeling ill.

The ideas about their community’s willingness to donate blood samples for research differed; some thought only half of the people would participate whereas others opined that most would do so because they were desperate for a cure for AIDS. It was also mentioned that some people might not donate blood because of their fear of witchcraft. However, some argued that a good explanation of the procedure and the research goal were important requirements for requesting blood samples. Almost all of the participants, in principle, would be willing to donate blood for research, although some had some reservations: ‘Yes, but I do not want to be a guinea pig’.

Participants indicated a preference for black, female or elderly people to inform them about their HIV (status). Most important was that it would be done with respect and professionalism. All but one participant said they would be willing to disclose their HIV status for research purposes under circumstances of confidentiality and a professional context.

All the participants considered more research on HIV and AIDS necessary; some thought that the presentation of research sometimes gave false hope. One traditional healer wanted ‘his profession’ to be involved.

Most of the participants thought it was not necessary or even ethical to reimburse research participants for their participation, but some opined that remuneration would enhance the participation, especially of poor people.

The participants reported knowing about the following ‘genetic’ diseases or disorders: haemophilia, diabetes, albinism, hypertension, cancer, HIV, schizophrenia, and Down syndrome. It is noteworthy that some of these disorders (hypertension, HIV susceptibility) are only slightly genetically determined or, only in particular cases (cancers), genetically determined.

The majority of the participants knew of relatives with a genetic disorder. They opined that, in their community, many people would relate genetic disorders to witchcraft (5 participants), curses (4 participants) or ancestors (3 participants). Most of the participants mentioned the people’s culture as reason for these responses. A lack of education and not being acquainted with the clinics in the community were also mentioned. Examples of responses are: ‘Our culture teaches us that if we do not give to our ancestors, they will punish us with a curse’ and:

’… if you listen to the symptoms of how they [their ancestors] were like before they died, you find out that it is a genetic disease that has been passed on to you’.

Five participants did not know what causes genetic disorders. Others gave reasons of natural and biological factors, culture and spirits. The participants stated that they were interested in information on genetic diseases in their family. They also reported an interest in knowing about their vulnerability to AIDS once infected with HIV. As one said, ‘I think it would be better if we all knew’.

2. This discussion was primarily structured according to the main themes (categories) that surfaced during the analysis and interpretation of the interviews (see section 3). These categories are: religion and culture, medicine (modern and traditional), sexual relations, family and context (race, gender, respect, education or information). However, from the answers of the interviewees, some of these themes appear to be closely related. Therefore, they are discussed under the following headings: religion, culture and medicine; sexual relations; family and gender; race; information and education.

Many black South Africans value and trust the values and opinions of traditional healers and strongly believe that certain diseases can be healed only by traditional healers (Mulaudzi 2005:324). Further, ‘approximately 80% of black patients visit traditional healers before or after they consult a biomedical doctor’ (Abdool Karim, Ziqubu-Page & Arendse 1994:1; Kalichman & Simbayi 2004). For this reason Peltzer, Mngqundaniso & Petros (2006) have argued that traditional healers could play an important role in the prevention and treatment of HIV and AIDS. The consultation of traditional healers is also important, since tradition and traditional healers do not support condom use, a widely accepted measure of protection against HIV infection. On the other hand, some researchers argue that the traditional religious customs such as widow inheritance and virginity inspection, initiation schools, premarital counselling and sexual cleansing have their own protective effects (Mulaudzi 2005:323). This latter view is, however, debated in the literature (Albertyn 2000). The involvement of traditional healers should include some training on HIV and AIDS and agreement about their role in the provision of healthcare as a whole. For instance, keeping to diets and using herbs can play a role in the resistance against AIDS (The Dr. Rath Health Foundation 2012). One traditional healer reported that traditional healers cannot cure AIDS but that, like the biomedical professional, they could also boost the immune system (Pasi 2007:4). However, some natural scientists have discovered dangers connected to the use of traditional medicine on HIV-positive people (Govender et al. 2006).

Our results indicate that, amongst traditional healers, there is some openness toward considering a role for them in HIV and AIDS care, but they want to be treated equally with other healthcare workers. The Traditional Health Practitioners Act allows traditional healers to treat patients for HIV and AIDS and recognises them as doctors in a traditional sense so that the government can give them the rights that medical doctors have (Republic of South Africa 2008). Therefore, for the involvement of traditional healers in dealing with HIV and AIDS, relationships of trust and respect should be built. At the same time, their possible role and contribution should be made clear. They should not reject the contribution of modern medicine. If they are permitted a role in the national health care system, their willingness to accept the contribution of modern medicine could increase. It is important for them to understand that metabolomic research, for example, can be beneficial for people so that they do not counsel against participation.

With respect to genetic disorders, it seems that (some) people in the target population hold traditional beliefs about the causal role of ancestors. This means that research on genetic influences on the vulnerability for AIDS should be communicated in a way that enables people to adopt certain new insights without disturbing (too rashly) their own religious and cultural beliefs.

We believe that from a healthcare point of view it is wise to involve traditional healers in HIV and AIDS care. But it would be desirable if they were to concentrate on diagnosis and lifestyle advice and refer clients to clinics. The issue of spiritual healing is too complex to deal with here; it clearly presents a challenge to churches.²

This and the previous subsection underline the need for helping (young) people to acquire life skills that, with respect to sexuality, go beyond explaining how to use a condom, but focuses on relationality, gender equality, mutual respect and responsibility.

The research reported in this article implies the introduction of an intervention from outside – a new technology that entails a novel way of dealing with a disease. Before introducing genomics/metabolomics research, the anticipated reaction of individuals to the intervention stemming from a different cultural or value system must be taken into account.

This is indicated in Figure 2, an expanded version of the model shown in Figure 1. The intervention embodies concepts and values from the culture from which it stems. Those concepts and values may, initially, not be clearly understood by those who will make use of that technology. However, when individuals within the community start making use of the technology for reasons of perceived personal benefit, a change of behaviour is constituted that will gradually begin to modify the norms and customs of the community and, in the long run, also their underlying views and values (the influence from the upper circle at the right-hand side of the figure down to the lower circles). Through those individuals, the existing socio-cultural system will be influenced (the feedback arrow from individual behaviour to the ‘shared cultural beliefs and values’). For example, a knowledge of modern medical opinion on HIV and AIDS and the use of VCT will contribute to a shift in ideas about the cause of the disease: not so much a curse from someone else but a (biological) consequence of certain events or actions.

From the expanded model of influences on individual behaviour, it is clear that the introduction of new research such as that on metabolomics in a community should be preceded by an inquiry into the individual behaviour system as indicated in the original model. In the first place, insight is needed into how to present the new technology in a way that will, at least, convince a number of individuals to make use of it (cf. Airhihenbuwa & Obregon 2000). In the second place, it should be understood how to inform and counsel individuals from the target population in such a way that they can handle the intervention and the embodied concepts and values in a way that prevents a deleterious disturbance of the socio-cultural system.

We see that this expanded model clearly illustrates the rationale behind this qualitative research and provides a better interpretative framework than the first model for the introduction of new technologies into a community to which it is alien.

FIGURE 2: Expanded model of influences on individual behaviour.

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