Browsing by Author "de Vries, Jantina"

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    African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study
    (2016) Munung, Nchangwi Syntia; de Vries, Jantina; Mayosi, Bongani M
    Introduction: Genomics research raises a number of ethical, legal and social issues (ELSI), one of which is the concept of benefit sharing. While benefits and benefit sharing are difficult to discuss because of questions on what needs to be shared, with whom and by whom, it cannot be pushed to the side-lines especially as it is a way of promoting justice in health research and of ensuring that research is of social value to study communities. In this study, we explored the perceptions and expectations of African genomics scientists on the benefits of genomics research to Africa. Method: This was a qualitative study and we adopted a grounded theory approach. I conducted 17 in-depth interviews with genomics researchers in Africa to explore their perceptions of benefits and benefit sharing in genomics research in Africa. Transcripts of interviews were imported into QSR-NVivo 10 for thematic analysis. A thematic analysis of informed consent documents used in 13 genomics studies in Africa was also done to explore how research benefits are documented. Results: Research collaboration, research capacity building and access to genomics medicine were perceived to be the main benefits of African genomics science (AGS). In terms of research collaboration, there were perceived fears of exploitation of African researchers and research participants, and the non-sustainability of AGS. To address the problem of exploitation, African researchers expressed the need for fairness in AGS through transparency and equity in research collaborations, enhancing research oversight, African ownership and leadership of AGS, community engagement and research capacity building. In terms of genomics medicine, African genomics researchers perceived that AGS would have an impact on healthcare in Africa in the area of diagnosis, pharmacogenomics and public health. However, there were concerns around access to genomics medicine by African populations, lack of capacity for genomics medicine in Africa and the need for AGS to focus on Africa's healthcare priorities. There was however limited awareness of the concept of benefit sharing among African genomics researchers though they perceived it is as an important concept for AGS. Interviewees suggested that benefit sharing could be in the form of research capacity building, feedback of study findings, science education, community projects and the sharing of profits.
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    Community engagement strategies for genomic studies in Africa: a review of the literature
    (2015-04-12) Tindana, Paulina; de Vries, Jantina; Campbell, Megan; Littler, Katherine; Seeley, Janet; Marshall, Patricia; Troyer, Jennifer; Ogundipe, Morisola; Alibu, Vincent P; Yakubu, Aminu; Parker, Michael
    Background: Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa. Methods: We conducted a review of the published literature to identify the community engagement strategies that can support the successful implementation of genomic studies in Africa. Our search strategy involved using online databases, Pubmed (National Library of Medicine), Medline and Google scholar. Search terms included a combination of the following: community engagement, community advisory boards, community consultation, community participation, effectiveness, genetic and genomic research, Africa, developing countries. Results: A total of 44 articles and 1 thesis were retrieved of which 38 met the selection criteria. Of these, 21 were primary studies on community engagement, while the rest were secondary reports on community engagement efforts in biomedical research studies. 34 related to biomedical research generally, while 4 were specific to genetic and genomic research in Africa. Conclusion: We concluded that there were several community engagement strategies that could support genomic studies in Africa. While many of the strategies could support the early stages of a research project such as the recruitment of research participants, further research is needed to identify effective strategies to engage research participants and their communities beyond the participant recruitment stage. Research is also needed to address how the views of local communities should be incorporated into future uses of human biological samples. Finally, studies evaluating the impact of CE on genetic research are lacking. Systematic evaluation of CE strategies is essential to determine the most effective models of CE for genetic and genomic research conducted in African settings.
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    Engaging research ethics committees to develop an ethics and governance framework for best practices in genomic research and biobanking in Africa: the H3Africa model
    (2019-10-18) Tindana, Paulina; Yakubu, Aminu; Staunton, Ciara; Matimba, Alice; Littler, Katherine; Madden, Ebony; Munung, Nchangwi S; de Vries, Jantina
    Abstract In the past decade, there has been an increase in genomic research and biobanking activities in Africa. Research initiatives such as the Human Heredity and Health in Africa (H3Africa) Consortium are contributing to the development of scientific capacity and infrastructure to support these studies on the continent. Despite this growth, genomic research and biobanking have raised important ethical challenges for key research stakeholders, including members of research ethics committees. One of these is the limited ethical and regulatory frameworks to guide the review and conduct of genomic studies, particularly in Africa. This paper is a reflection on a series of consultative activities with research ethics committees in Africa which informed the development of an ethics and governance framework for best practices in genomic research and biobanking in Africa. The paper highlights the engagement process and the lessoned learned.
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    Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa
    (BioMed Central, 2017-11-29) Heathfield, Laura J; Maistry, Sairita; Martin, Lorna J; Ramesar, Raj; de Vries, Jantina
    Background: The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. Main body: This article discusses some of the ethical challenges that were encountered in these research projects. Among these challenges was the adaptation of research workflows to fit in with an exceptionally busy service delivery that is operating with limited resources. Whilst seeking guidance from the literature regarding research on deceased populations, it was noted that next of kin of decedents are not formally recognised as a vulnerable group in the existing ethical and legal frameworks in South Africa. The authors recommend that research in the forensic mortuary setting is approached using guidance for vulnerable groups, and the benefit to risk standard needs to be strongly justified. Lastly, when planning forensic genetics research, consideration must be given to the potential of uncovering incidental findings, funding to validate these findings and the feedback of results to family members; the latter of which is recommended to occur through a genetic counsellor. Conclusion: It is hoped that these experiences will contribute towards a formal framework for conducting forensic genetic research in medico-legal mortuaries in South Africa.
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    Ethical issues in genomic research on the African continent: experiences and challenges to ethics review committees
    (2014-08-21) Ramsay, Michèle; de Vries, Jantina; Soodyall, Himla; Norris, Shane A; Sankoh, Osman
    Abstract This is a report on a workshop titled ‘Ethics for genomic research across five African countries: Guidelines, experiences and challenges’, University of the Witwatersrand, Johannesburg, South Africa, 10 and 11 December 2012. The workshop was hosted by the Wits-INDEPTH partnership, AWI-Gen, as part of the H3Africa Consortium.
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    “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa
    (BioMed Central, 2017-02-15) Masiye, Francis; Mayosi, Bongani; de Vries, Jantina
    Background: Advances in genetic and genomic research have introduced challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for an H3Africa genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand ethical challenges in obtaining informed consent in the RHDGen study. Methods: We used a qualitative study methodology involving in-depth interviews and participant observations. Our study participants were RHDGen cases (patients), healthy controls and research staff involved in the recruitment of RHDGen cases and controls. In total, we conducted 32 in-depth interviews with RHDGen cases and controls, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen cases and controls. The interviews were conducted in English, audio-recorded and transcribed verbatim. Data were analyzed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa. Results: Most healthy controls joined the RHDGen study in order to be screened for rheumatic heart disease (diagnostic misconception). A majority of RHDGen cases decided to join the RHDGen study because of therapeutic misconception. Conclusion: The ethical challenges that impacted on obtaining informed consent in the RHDGen study were complex. In this study, the main challenges were diagnostic misconception among RHDGen controls and therapeutic misconception among RHDGen cases.
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    "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use
    (BioMed Central Ltd, 2012) van Schalkwyk, Gerrit; de Vries, Jantina; Moodley, Keymanthri
    BACKGROUND: The banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and Europe, hardly any studies have been reported in Africa. This is problematic in particular in light of the growing amount of research taking place in Africa, and with the rise of biobanking practices also on the African continent. In order to investigate the perspectives of African research participants, we conducted a study with research participants in a TB study in the Western Cape, South Africa. METHODS: Semi-structured interviews were conducted using an interview guide which drew on the most prominent themes expressed in current literature on sample storage, re-use and exportation. Interviews were conducted in Afrikaans and subsequently translated into English by the same interviewer. Interviews were transcribed verbatim and analysed qualitatively. RESULTS: The results of our study indicate that the majority of participants were supportive of giving one-time consent to the storage and re-use of their samples. The concept of research being for a "good cause" was a central prerequisite. Additionally, a significant minority requested that they be re-contacted if a future use was not stipulated on the original consent. There was also considerable variation in how participants understood the concept of a 'good cause', with participants describing three distinct categories of research, of which two were generally thought to constitute 'good cause' research. Research that was for-profit was considered to fall outside the spectrum of 'good cause' research. Participants displayed confidence in the abilities of the researchers to make future decisions regarding sample use, but seemed unaware of the role of ethics committees in either this process or more generally. CONCLUSIONS: Participants expressed a wide and complex range of views about issues of sample storage and re-use, and they showed a great deal of trust in researchers. Participants' willingness to have their samples stored and re-used is consistent with findings from existing studies. However, in contrast to existing literature, participants were generally not in favour of for-profit research. Further research needs to be done to explore these ideas in other communities, both in South Africa and other countries.
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    Knowing who to trust: exploring the role of ‘ethical metadata’ in mediating risk of harm in collaborative genomics research in Africa
    (BioMed Central, 2014-08-13) de Vries, Jantina; Williams, Thomas N; Bojang, Kalifa; Kwiatkowski, Dominic P; Fitzpatrick, Raymond; Parker, Michael
    Background The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN Consortium, one of the first international collaborative genomics research projects in Africa. Methods We conducted a study in three MalariaGEN project sites in Kenya, the Gambia, and the United Kingdom. The study entailed analysis of project documents and 49 semi-structured interviews with fieldworkers, researchers and ethics committee members. Results Concerns about how best to address the potential for harm to ethnic groups in MalariaGEN crystallised in discussions about the development of a data sharing policy. Particularly concerning for researchers was how best to manage the sharing of genomic data outside of the original collaboration. Within MalariaGEN, genomic data is accompanied by information about the locations of sample collection, the limitations of consent and ethics approval, and the values and relations that accompanied sample collection. For interviewees, this information and context were of important ethical value in safeguarding against harmful uses of data, but is not customarily shared with secondary data users. This challenged the ability of primary researchers to protect against harmful uses of ‘their’ data. Conclusion We identified three protective mechanisms – trust, the existence of a shared morality, and detailed contextual understanding – which together might play an important role in preventing the use of genomic data in ways that could harm the ethnic groups included in the study. We suggest that the current practice of sharing of datasets as isolated objects rather than as embedded within a particular scientific culture, without regard for the normative context within which samples were collected, may cause ethical tensions to emerge that could have been prevented or addressed had the ‘ethical metadata’ that accompanies genomic data also been shared.
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    Knowledge and experiences of parents with children affected by Sickle Cell Disease in Cape Town
    (2015) Van Niekerk, Katryn; Wonkam, Ambroise; de Vries, Jantina
    Sickle Cell Disease (SCD) is an autosomal recessively inherited blood disorder that leads to a debilitating systemic illness. Although the disease was initially found predominantly in tropical and subtropical regions, SCD has now become a global health problem, due to migration of people from various countries with a high burden thereof. Consequently, the incidence of SCD in South Africa has increased dramatically over the last decade. This study, which constitutes a minor dissertation in fulfilment of an MSc (Med) Genetic Counselling degree, aimed to explore the knowledge and understanding of SCD among parents of affected children in Cape Town as well as identify burdens associated with caring for a child with SCD. Furthermore, the study assessed opportunities to improve genetic counselling services available to parents and explored their attitude to preventive policies. A phenomenological approach was used to conduct this research. Seventeen semi-structured interviews were conducted with the biological parent of a child attending the Red Cross War Memorial Children's Hospital Haematology Clinic. Participants were selected using both purposive and convenience sampling methods. Data collected during these interviews were analysed using thematic content analysis. Themes and relevant sub-themes were identified and grouped into three categories: knowledge and understanding; experiences and burdens; and attitude toward preventative policies. While the majority of participants had some knowledge of SCD, several misconceptions were discovered, often relating to participants' prior knowledge of the disease. A number of burdens experienced by participants were revealed, with both practical and psychosocial implications. Finally, it was found that the majority of participants supported all methods of screening for SCD, regardless of whether they would make use of the screening services themselves. Findings of this study provide valuable insights on the subject of experiences of parents of children affected with SCD as well as the potential role of genetic counselling services. This study contributes towards improving understanding and subsequent services provided to individuals raising a child affected with Sickle Cell Disease.
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    A perpetual source of DNA or something really different: ethical issues in the creation of cell lines for African genomics research
    (BioMed Central, 2014-08-07) de Vries, Jantina; Abayomi, Akin; Brandful, James; Littler, Katherine; Madden, Ebony; Marshall, Patricia; Ouwe Missi Oukem-Boyer, Odile; Seeley, Janet
    Background: The rise of genomic studies in Africa – not least due to projects funded under H3Africa – is associated with the development of a small number of biorepositories across Africa. For the ultimate success of these biorepositories, the creation of cell lines including those from selected H3Africa samples would be beneficial. In this paper, we map ethical challenges in the creation of cell lines. Discussion: The first challenge we identified relates to the moral status of cells living in culture. There is no doubt that cells in culture are alive, and the question is how this characteristic is relevant to ethical decision-making. The second challenge relates to the fact that cells in culture are a source of cell products and mitochondrial DNA. In combination with other technologies, cells in culture could also be used to grow human tissue. Whilst on the one hand, this feature increases the potential utility of the sample and promotes science, on the other it also enables further scientific work that may not have been specifically consented to or approved. The third challenge relates to ownership over samples, particularly in cases where cell lines are created by a biobank, and in a different country than where samples were collected. Relevant questions here concern the export of samples, approval of secondary use and the acceptability of commercialisation. A fourth challenge relates to perceptions of blood and bodily integrity, which may be particularly relevant for African research participants from certain cultures or backgrounds. Finally, we discuss challenges around informed consent and ethical review. Summary: In this paper, we sought to map the myriad of ethical challenges that need to be considered prior to making cell line creation a reality in the H3Africa project. Considering the relative novelty of this practice in Africa, such challenges will need to be considered, discussed and potentially be resolved before cell line creation in Africa becomes financially feasible and sustainable. We suggest that discussions need to be undertaken between stakeholders internationally, considering the international character of the H3Africa project. We also map out avenues for empirical research.
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    Predictors of consent to cell line creation and immortalisation in a South African schizophrenia genomics study
    (BioMed Central, 2018-07-11) Campbell, Megan M; de Vries, Jantina; Mqulwana, Sibonile G; Mndini, Michael M; Ntola, Odwa A; Jonker, Deborah; Malan, Megan; Pretorius, Adele; Zingela, Zukiswa; Van Wyk, Stephanus; Stein, Dan J; Susser, Ezra
    Background Cell line immortalisation is a growing component of African genomics research and biobanking. However, little is known about the factors influencing consent to cell line creation and immortalisation in African research settings. We contribute to addressing this gap by exploring three questions in a sample of Xhosa participants recruited for a South African psychiatric genomics study: First, what proportion of participants consented to cell line storage? Second, what were predictors of this consent? Third, what questions were raised by participants during this consent process? Methods 760 Xhose people with schizophrenia and 760 controls were matched to sex, age, level of education and recruitment region. We used descriptive statistics to determine the proportion of participants who consented to cell line creation and immortalization. Logistic regression methods were used to examine the predictors of consent. Reflections from study recruiters were elicited and discussed to identify key questions raised by participants about consent. Results Approximately 40% of participants consented to cell line storage. The recruiter who sought consent was a strong predictor of participant’s consent. Participants recruited from the South African Eastern Cape (as opposed to the Western Cape), and older participants (aged between 40 and 59 years), were more likely to consent; both these groups were more likely to hold traditional Xhosa values. Neither illness (schizophrenia vs control) nor education (primary vs secondary school) were significant predictors of consent. Key questions raised by participants included two broad themes: clarification of what cell immortalisation means, and issues around individual and community benefit. Conclusions These findings provide guidance on the proportion of participants likely to consent to cell line immortalisation in genomics research in Africa, and reinforce the important and influential role that study recruiters play during seeking of this consent. Our results reinforce the cultural and contextual factors underpinning consent choices, particularly around sharing and reciprocity. Finally, these results provide support for the growing literature challenging the stigmatizing perception that people with severe mental illness are overly vulnerable as a target group for heath research and specifically genomics studies.
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    Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries
    (BioMed Central, 2017-02-02) de Vries, Jantina; Munung, Syntia N; Matimba, Alice; McCurdy, Sheryl; Ouwe Missi Oukem-Boyer, Odile; Staunton, Ciara; Yakubu, Aminu; Tindana, Paulina; H3Africa Consortium
    Background: The introduction of genomics and biobanking methodologies to the African research context has also introduced novel ways of doing science, based on values of sharing and reuse of data and samples. This shift raises ethical challenges that need to be considered when research is reviewed by ethics committees, relating for instance to broad consent, the feedback of individual genetic findings, and regulation of secondary sample access and use. Yet existing ethics guidelines and regulations in Africa do not successfully regulate research based on sharing, causing confusion about what is allowed, where and when. Methods: In order to understand better the ethics regulatory landscape around genomic research and biobanking, we conducted a comprehensive analysis of existing ethics guidelines, policies and other similar sources. We sourced 30 ethics regulatory documents from 22 African countries. We used software that assists with qualitative data analysis to conduct a thematic analysis of these documents. Results: Surprisingly considering how contentious broad consent is in Africa, we found that most countries allow the use of this consent model, with its use banned in only three of the countries we investigated. In a likely response to fears about exploitation, the export of samples outside of the continent is strictly regulated, sometimes in conjunction with regulations around international collaboration. We also found that whilst an essential and critical component of ensuring ethical best practice in genomics research relates to the governance framework that accompanies sample and data sharing, this was most sparingly covered in the guidelines. Conclusions: There is a need for ethics guidelines in African countries to be adapted to the changing science policy landscape, which increasingly supports principles of openness, storage, sharing and secondary use. Current guidelines are not pertinent to the ethical challenges that such a new orientation raises, and therefore fail to provide accurate guidance to ethics committees and researchers.
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    Return of a Fragile X Syndrome Genetic Result: Exploring the feedback of Individual genetic findings and their relation to traditional knowledge in a village in Cameroon
    (2021) Karen, Kengne Kamga; Wonkam, Ambroise; de Vries, Jantina
    Introduction: Fragile X Syndrome (FXS) is the most common genetic cause of intellectual disability (ID) and Autism Spectrum Disorder (ASD). It is caused by the expansion of CGG (Cytosine, Guanine, Guanine) repeats at the 5' untranslated region (UTR) of the Fragile X Mental Retardation gene 1 (FMR1). This gene codes for the Fragile X Mental retardation protein, which is responsible for healthy brain development. This condition is transmitted through an X-linked dominant pattern and is known to affect approximately 1 in 2500–4000 males and 1 in 7000–8000 females. In 2011, two siblings received a positive diagnosis of FXS at the Child Neurology Unit of the Yaoundé Gynaeco-Obstetric and Paediatric hospital in Cameroon. Informal data from the first consultation with their mother (P0), showed that she related her children's condition to a curse from her maternal grandfather, the village's chief. This prompted us to ask four research questions for this project: What is the transmission pattern for FXS in this family? How do families and communities explain the pattern of FXS and other inherited forms of ID in the village? What is the impact of receiving a genetic diagnosis on individuals, families, and communities? And what are the stigma experiences around FXS in this community? As a first step to gather empirical work, a scoping review of the lived experiences of FXS caretakers was conducted. It was revealed that these experiences could broadly be summarised into four main themes, namely: grief experiences, challenges of living with FXS, coping mechanisms, and the need to plan for the future of children with FXS. From this review, it was noted that healthcare workers had limited knowledge and a lack of expertise regarding FXS, whilst there was an overall lack of African qualitative literature on FXS. This set the precedent for the second and third components of the project. Methodology: An ethnographic approach was used in this study. Snowball sampling was used to recruit 92 participants who were 18 years old and above. A topic guide was used to gather data through 10 focus group discussions and 23 in-depth interviews with NVivo 12 used for data analysis. The questionnaire explored participants' understanding of FXS, their lived experiences, the stigma association with FXS, and the effects of receiving a positive or negative genetic diagnosis. Moreover, cascade counselling and testing for FXS was offered to 46 participants. Data gathered from this component was analysed using Epi-info 7.2. and pedigrees were drawn using Cyrillic 3.0.400. Results & Discussion: Cascade testing included 58% of participants (n = 27/46) that were females. The FXS laboratory diagnosis of females showed 14.81% (n = 4/27) with a full mutation, 37.04% (n = 10) had a premutation and 48.15% (n = 13/27) were normal. On the other hand, 21.05% (n=4/19) males had a full mutation. The analysis of this family's pedigree further revealed that the founder of this family was probably a normal transmitting male carrier. Moreover, people in the community and this family described the causes of FXS or inherited forms of ID in four different explanatory models. The curse model was the primary explanatory model and is based on a curse from the chief who bewitched his daughters and wives because they did not mourn his ID servant. Other explanations were the spiritual model that relates FXS to a punishment from God and the psychosocial model, which attributes FXS to events in the prenatal and perinatal periods. Finally, the genetic model is an emerging explanation resulting from the return of the FXS genetic result. Furthermore, receiving a genetic diagnosis resulted in two main themes which were psychological adaptation and communication of the genetic risk of FXS. Receiving a diagnosis was associated with happiness and relief, while the latter described genetic guilts, survivor guilt, and frustrations associated with a family history of FXS and taking care of developmentally delayed children. Lastly, in this community, we identified public stigma directed towards the royal family and courtesy stigma experienced by the royal family members. Most interviewees believed that people from the royal family should have a unique way of addressing FXS children from the chieftaincy because of their position in society. Due to their social position, the royal family uses their status to negotiate marriages with community members. Conclusion: Early detection of carrier status will increase family planning options through genetic counselling, premarital screening, and prenatal diagnosis. My findings identified specific sociocultural challenges that should be addressed during the development and implementation of genetic counselling services. Returning the result of a genetic test can create feelings of guilt in the patient and their relatives. Over time, these families can develop coping mechanisms that revolve around preparing future generations about the risk of having FXS. Hence, health care workers or people who are comfortable talking about FXS should serve as intermediaries for affected families.
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    Stigma and African genomics research: An exploration of stigma associated with the genetic attribution of rheumatic heart disease
    (2018) Faure, Marlyn Collin; de Vries, Jantina; Engel, Mark E
    There is mixed evidence about how genetic attribution of disease may impact on stigma. One theory, based on essentialism, argues that knowledge of genetic attribution may increase stigma, while attribution theory argues that bio-genetic explanations may result in individuals feeling a decreased sense of personal responsibility about the disease. Most empirical studies shows mixed evidence. These studies however are mostly conducted in Western contexts. This study then is one of the few studies investigating the impact of genetic attribution on stigma in an African context. Specifically, this paper explores the question of genetic attribution with RHD patients in the Western Cape. An important part of this exploration was the use of video content to stimulate discussion in focus groups. Many studies include visual methods and justify the use of visual method based on the assumption that visual methods are more effective at stimulating discussion and generating richer data in qualitative research. In addition to explore the impact of genetic attribution on stigma, this thesis also evaluates the efficacy of visual in qualitative research. Methods: Given that this paper has two components, one investigating the impact of genetic attribution on stigma, and a methodological component, this thesis presents findings of three sub-studies. The primary study (Study 3 in this thesis) related to stigma and genetic attribution, 11 focus group discussions were conducted using vignettes to explore the impact of genetic attribution on stigma with RHD patients. These vignettes were developed into films and used to stimulate discussion in FGDs. Thematic coding analysis was used to analyse data. For the methodological component, one study, presents a systematic review of evidence related to the efficacy of visual methods in qualitative research (Study 1 in this thesis). The final study, is an empirical evaluation of the efficacy of visual methods (Study 2 in this thesis). A before/after study designed was conducted to evaluate the efficacy of visual methods. Six of the FGDs watched the video clips produced from the FGDs, while the other five had the vignettes read to them. Another source of evidence for the evaluation was using the coding density calculated by NVivo 11 software. Results: For the primary study investigating the impact of stigma, the finding show that stigma has a negligible impact of stigma amongst RHD patients in the Western Cape. For the methodological component, the systematic review finds evidence that visual methods are more effective at generating richer data. The evaluation study however finds no difference in results before and after each stimuli, when compared between groups who watched the video or heard the vignettes read. Conclusion: For the primary study investigating the impact of stigma, one of the reasons no evidence was found was because of the low level stigma reported. In instances where stigma is reported, I argue that it is in the context of RHD in this population, the impact of genetic attribution on stigma is displaced given that individuals having multiple explanations models of genetics is just one. Additionally, this population is forced navigate more immediate challenges such as cultural norms, and structural inequality related to the enduring impact of South Africa’s racialised apartheid history. In relation to the methodological component, I argue that results from the systematic review is difficult to generalise given the small number of included studies, and the lack of detail described in the studies, used to evaluate claims that visual methods are more effective. The result of the evaluation finds no difference between the groups which may be there are no differences between these methods, or the questionnaire may have been inappropriate. This study nonetheless is still the first to empirical evaluate such claims.