Browsing by Author "Moodley, Keymanthri"

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    Health Research Ethics Committees in South Africa 12 years into democracy
    (BioMed Central Ltd, 2007) Moodley, Keymanthri; Myer, Landon
    BACKGROUND: Despite the growth of biomedical research in South Africa, there are few insights into the operation of Research Ethics Committees (RECs) in this setting. We investigated the composition, operations and training needs of health RECs in South Africa against the backdrop of national and international guidelines. METHODS: The 12 major health RECs in South Africa were surveyed using semi-structured questionnaires that investigated the composition and functions of each REC as well as the operational issues facing committees. RESULTS: Health RECs in SA have an average of 16 members and REC members are predominantly male and white. Overall, there was a large discrepancy in findings between under-resourced RECs and well resourced RECs. The majority of members (56%) are scientists or clinicians who are typically affiliated to the same institution as the health REC. Community representatives account for only 8% of membership. Training needs for health REC members varied widely. CONCLUSION: Most major health RECs in South Africa are well organized given the resource constraints that exist in relation to research ethics in developing countries. However, the gender, racial and occupational diversity of most of these RECs is suboptimal, and most RECs are not constituted in accordance with South African guidelines. Variability in the operations and training needs of RECs is a reflection of apartheid-entrenched influences in tertiary education in SA. While legislation now exists to enforce standardization of research ethics review systems, no provision has been made for resources or capacity development, especially to support historically-disadvantaged institutions. Perpetuation of this legacy of apartheid represents a violation of the principles of justice and equity.
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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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    Paediatric HIV disclosure in South Africa - caregivers' perspectives on discussing HIV with infected children
    (2006) Moodley, Keymanthri; Myer, Landon; Michaels, Desiree; Cotton, Mark
    Most paediatric HIV infections in South Africa are transmitted perinatally. Lack of widely available HIV treatment means that most children do not survive to an age at which disclosure becomes a relevant concern. However, with the expansion of HIV treatment programmes the proportion of HIV-infected children surviving to an advanced age is likely to increase substantially during the next 5 - 10 years. A similar phenomenon was observed in Europe and North America with the advent of antiretroviral therapy (ART) in the mid-1990s, and in resource-rich settings approximately half of perinatally infected children are expected to survive beyond 13 years of age.1
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    Participant remuneration for research - how much is enough
    (2003) Moodley, Keymanthri; Myer, Landon
    Most international and national guidelines on health research ethics vaguely warn against unfair inducement of individuals to participate in research but are otherwise silent on this issue. The most comprehensive guideline referring to participant remuneration is that of the Council for International Organisations of Medical Sciences (CIOMS). 1 This document has been developed in conjunction with the World Health Organisation (WHO) and refers specifically to research in developing countries. Guidelines 4 (1993 version) and 11 (2002 revised draft) refer to ‘inducement to participate’. Guideline 4 states, inter alia, that ‘subjects may be paid for inconvenience and time spent, and should be reimbursed for expenses incurred, in connection with their participation in research’. Guideline 11 states, inter alia, that ‘subjects may be paid or otherwise rewarded for inconvenience and time spent’. The guideline also details acceptable and unacceptable recompense, remuneration of guardians of incompetent participants and remuneration in the event of withdrawal from a study.