Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mindset that regards pathogens as enemies to be defeated, terms such as “shock and kill” have become widely accepted idioms within HIV cure research. Such language and symbolism must be critically examined as they may be especially problematic when used to express scientific ideas within emerging health-related fields. In this paper, philosophical analysis and an interdisciplinary literature review utilizing key texts from sociology, anthropology, history, and Chinese and African studies were conducted to investigate the current proliferation of military metaphors. We found the use of these metaphors to be ironic, unfortunate, and unnecessary. To overcome military metaphors we propose to: 1) give them less aggressive meanings, and/or 2) replace them with more peaceful metaphors. Building on previous authors’ work, we argue for the increased use of “journey” (and related) metaphors as meaningful, cross-culturally appropriate alternatives to military metaphors.
Progress in HIV research has led to the development of innovative strategies for HIV cure so that patients can be disease free in the absence of antiretroviral therapy. Consequently research studies are being designed and planned globally. South Africa is no exception. However little is known about stakeholders’ knowledge, understanding and expectations of future cure research. This study aimed to obtain in depth qualitative insights into stakeholder perspectives at this formative stage of HIV cure research in South Africa. We interviewed 15 stakeholders in a busy HIV research clinic in the Western Cape, South Africa. This purposive sample comprised patients, community advisory board (CAB) members, research nurses, doctors, counsellors and a project manager. All participants provided informed consent. Interviews were transcribed verbatim and analysed using thematic content analysis. The study was approved by the Health Research Ethics Committee at Stellenbosch University. Broad themes that emerged included the meaning of cure, awareness of HIV cure research, risks and benefits of such research. General awareness and understanding of HIV cure research was lower than expected. Healthcare workers interpreted “cure” to mean complete eradication of virus from the body including from reservoirs while patients’ perceived cure to be a return to normality with no need for future medication. Some participants expressed a fatalistic attitude to the disease and described HIV as an “end-time illness” with no prospect of cure. In general, HIV cure research was regarded as risky - biologically psychologically and socially. If study designs were to include treatment interruption, participants would comply only if there was a guarantee of success. Given these perceptions of HIV cure research, significant challenges to consent processes and participant recruitment can be anticipated for proposed trials in South Africa. Authentic community engagement and intensive educational interventions will be necessary prior to future cure research in the country.
The South African Traditional Health Practitioners Act 22 of 2007 is now fait accompli. The Act has been promulgated and the Department of Health (DoH) is proceeding with its implementation. An Interim Traditional Health Practitioners Council and a dedicated DoH deputy director have been appointed, the appointment of a registrar is being finalised, and the DoH has conducted a roadshow to introduce the Act and its implications to groups of traditional health practitioners (THPs) countrywide. The objective is eventual formalisation and professionalisation of THP practice to provide appropriate primary healthcare services through co-operation with biomedical service providers. Biomedical practitioners should understand the provisions of Act 22, and how this may affect their own practices. HEALTHCARE DELIVERYThe decolonialisation of medicine in South Africa: Threat or opportunity? M de Roubaix Malcolm de Roubaix is a trained anaesthesiologist who holds a doctorate in Applied Ethics (Bioethics). He is affiliated to the Centre for Medical Ethics and Law, Department of Medicine, Faculty of Medicine and Health
Current informed consent practices conform to the informed consent paradigm (ICP). Our intention is finally to promote patient autonomy through the provision of information intended to remove the information (i.e. power) differential between doctor and patient. ICP is fundamentally flawed, since it is impossible to comprehensively and explicitly inform. A fundamental problem is our reliance on the containerconduit metaphor of informing. As a linguistic act, this metaphor conceptualises the process of informing as passive, when in reality informing and consequent sense-making are parts of an individualised, personal and active process. The difficulties of the ICP are discussed, as are possible alternative strategies (reverting to paternalism, retaining the illusion of autonomy, and de-linking informing/consent, or the moral and legal aspects of consent). Alternative models are also discussed (e.g. Manson and O'Neill's notion of informed consent as a transaction). Concluding suggestions include drawing on an ethics of responsibility, incorporating the notion of informed consent as a transaction, debating the issues raised here and promoting the ethical empowerment of practising doctors.
BackgroundConsent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. HIV cure/eradication research is scientifically more complex and consequently, consent processes for clinical trials in this field are likely to pose a significant challenge. Given that research efforts are now moving toward HIV eradication, stakeholder engagement to inform appropriate ethics oversight of such research is timely. This study sought to establish the perspectives of a wide range of stakeholders in HIV treatment and research to inform consent processes for cure research.MethodsIn total, 68 South African stakeholders participated in two qualitative research modalities. In-depth interviews (IDIs) were conducted with a purposive sample of 42 individuals - audiotaped with consent. Twenty-six stakeholders participated in three focus group discussions (FGDs). Thematic analysis of transcribed IDIs and FGDs was conducted.ResultsThe majority of respondents indicated that there could be unique challenges in HIV cure research requiring special attention. In particular, given the complexity of cure science, translation of concepts into lay language would be critical for potential participants to adequately appreciate risks and benefits in early phase research with experimental interventions. Furthermore, to aid understanding of risks and benefits against a background of desperation for a cure, specially trained facilitators would be required to assist with a psychological assessment prior to consent to avoid curative misconceptions. Long-term participant engagement to assess durability of a cure would mean that the consent process would be prolonged, necessitating annual re-consent. Building trust to maintain such long-term relationships would be critical to retain study participants.ConclusionUnique consent requirements for cure research in South Africa would include significant efforts to maximise understanding of trial procedures, risks and the need for long-term follow-up. However, the psychological dimension of cure must not be underestimated. Beyond an understanding of cure science, the emotional impact of HIV cure advances the discourse from cure to healing. Consequently, the consent process for cure research would need to be enhanced to include psychological support and counselling. This has several important implications for research ethics review requirements for consent in HIV cure research.
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