Malcolm De Roubaix

The aim of the article is threefold: to argue and motivate that unnecessary surgery is a worldwide phenomenon, that it exposes patients to unwarranted risks and that patients should actively participate in decision-making and take a shared responsibility to protect their interests. There is a firm belief that the enterprise of medicine is something of value – both intrinsically because being healthy is good and instrumentally since being healthy allows us to do what we wish to, to attain happiness and to live valuable lives. However, this can only hold if treatment is justified in terms of accepted evidence-based criteria. Imperative for all forms of treatment, including costly and invasive investigations, this is particularly true for surgical interventions because no surgery is without risk. Surgery performed outside of the norms of accepted indications constitutes a grave form of assault. Medicine is a noble cause if we stick to the rules and help each other to do so. As professionals, our most fundamental regulation is by ourselves.

Military metaphors are pervasive in biomedicine, including HIV research. Rooted in the mind set 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 article, 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 give them less aggressive meanings, and/or replace them with more peaceful metaphors. Building on previous authors' work, we argue for the increased use of “journey” metaphors as meaningful, cross-culturally app...

Consent 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. In total, 68 South African stakeholders participated in two qualitative research modalities. In-depth interviews were conducted with a purposive sample of 42 individuals - audiotaped with consent. Twenty-six stakeholders participated in three focus group discussions. Thematic analysis of transcribed IDIs and FGDs was conducted. The 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. Unique 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.

Current informed consent practices conform to the informed consent paradigm. Our intention is finally to promote patient autonomy through the provision of information intended to remove the information 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 container-conduit 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. Alternative models are also discussed. 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.