Indiscretion and other threats to confidentiality

Confidentiality is a central principle of medical ethics. The most common breaches of this principle are not the rare cases in which the principle is overridden by other considerations. Instead, confidentiality is most often breached when it clearly should be respected. In this paper I outline these threats to confidentiality, the most frequent and disturbing of which is indiscretion in its many forms

From medical manners to moral reasoning: an historical overview of bioethics in the University of Cape Town’s Faculty of Health Sciences

The history of bioethics in the Faculty of Health Sciences of the University of Cape Town (UCT) follows a similar pattern to elsewhere. At first, bioethics received little formal attention, but there has been a flowering of interest over the last few decades. There has also been a shift from a professionally insular view of bioethics to one informed by non-medical disciplines. While this pattern is to be found in many parts of the world, there are some distinctive, but not unique, features of bioethics at South Africa’s oldest medical school

A justification for rights

Bibliography: p. 217-224.This thesis provides an argument in favour of there being natural rights. Such rights are rights which creatures necessarily have in virtue of their nature alone. These are to be distinguished from non-natural rights which may or may not be acquired. It is argued that natural rights possess three features: (1) they have correlative duties; (2) they have great strength; and (3) they are exclusively negative. It is argued further that that the strength of some natural rights must be absolute. One chapter is devoted to arguing against the justifications for rights advanced by Immanuel Kant, Alan Gewirth and John Rawls. Another chapter shows that the problem with utilitarianism is that it cannot satisfactorily accommodate rights. This thesis claims that morality must be connected to well-being and that well-being should be understood objectively rather than subjectively. Further, it advances the view that since individuals, rather than societies or temporal stages of individuals, are the morally significant units of existence, morality should be connected to the well-being of individuals. It is then argued that a moral tool possessing the features which absolute natural rights possess is essential to moor morality to individual well-being. Given the great strength of absolute rights, they must protect only the most important objective interests an individual subject has and they must protect against only the most severe violations of these interests. Various scales of harm to the individual are envisaged, including scales of pain, injury and restriction of liberty. The view is advanced that absolute rights come into existence at a particular threshold on these scales, absolutely protecting the individual from having to make a sacrifice of that degree or greater. Although absolute natural rights have this important function they I are not seen as being the only principles on the moral landscape or even the only nonderivative ones. A few chapters are devoted to applying the theory to a number of questions, including what absolute rights there are and what creatures have rights. The thesis also answers a number of common criticisms of natural rights

Just admissions: South African universities and the question of racial preference

South African universities and other institutions of higher education currently give preference to student applicants from designated ‘races’. This paper argues that such a policy is morally indefensible. Although the imperative to redress injustice is endorsed, this, it is argued, does not entail that applicants may be favoured on the basis of their (purported) ‘race’. Nor can the pursuit of diversity be used to defend racial preference. Next, it is argued that any policy on racial preference must have both a racial taxonomy and a method of assigning individuals to different taxonomic categories. It is argued that both competing methods of categorizing individuals – one subjective and the other objective – are unacceptable. Finally, the paper highlights a number of fallacious responses to criticisms of racial preference

Taking Humour (Ethics) Seriously, But Not Too Seriously

Humour is worthy of serious ethical consideration. However, it is often taken far too seriously. In this paper, it is argued that while humour is sometimes unethical, it is wrong much less often than many people think. Non-contextual criticisms, which claim that certain kinds of humour are always wrong, are rejected. Contextual criticisms, which take issue with particular instances of humour rather than types of humour, are more promising. However, it is common to overstate the number of contexts in which humour is wrong. Various mistakes of this kind are highlighted and cautioned against

Urinary p75(ECD): A prognostic, disease progression, and pharmacodynamic biomarker in ALS.

OBJECTIVE: To evaluate urinary neurotrophin receptor p75 extracellular domain (p75(ECD)) levels as disease progression and prognostic biomarkers in amyotrophic lateral sclerosis (ALS). METHODS: The population in this study comprised 45 healthy controls and 54 people with ALS, 31 of whom were sampled longitudinally. Urinary p75(ECD) was measured using an enzyme-linked immunoassay and validation included intra-assay and inter-assay coefficients of variation, effect of circadian rhythm, and stability over time at room temperature, 4°C, and repeated freeze-thaw cycles. Longitudinal changes in urinary p75(ECD) were examined by mixed model analysis, and the prognostic value of baseline p75(ECD) was explored by survival analysis. RESULTS: Confirming our previous findings, p75(ECD) was higher in patients with ALS (5.6 ± 2.2 ng/mg creatinine) compared to controls (3.6 ± 1.4 ng/mg creatinine, p < 0.0001). Assay reproducibility was high, with p75(ECD) showing stability across repeated freeze-thaw cycles, at room temperature and 4°C for 2 days, and no diurnal variation. Urinary p75(ECD) correlated with the revised ALS Functional Rating Scale at first evaluation (r = -0.44, p = 0.008) and across all study visits (r = -0.36, p < 0.0001). p75(ECD) also increased as disease progressed at an average rate of 0.19 ng/mg creatinine per month (p < 0.0001). In multivariate prognostic analysis, bulbar onset (hazard ratio [HR] 3.0, p = 0.0035), rate of disease progression from onset to baseline (HR 4.4, p < 0.0001), and baseline p75(ECD) (HR 1.3, p = 0.0004) were predictors of survival. CONCLUSIONS: The assay for urinary p75(ECD) is analytically robust and shows promise as an ALS biomarker with prognostic, disease progression, and potential pharmacodynamic application. Baseline urinary p75(ECD) provides prognostic information and is currently the only biological fluid-based biomarker of disease progression

Use of the 'Accountability for Reasonableness' Approach to Improve Fairness in Accessing Dialysis in a Middle-Income Country

Universal access to renal replacement therapy is beyond the economic capability of most low and middle-income countries due to large patient numbers and the high recurrent cost of treating end stage kidney disease. In countries where limited access is available, no systems exist that allow for optimal use of the scarce dialysis facilities. We previously reported that using national guidelines to select patients for renal replacement therapy resulted in biased allocation. We reengineered selection guidelines using the 'Accountability for Reasonableness' (procedural fairness) framework in collaboration with relevant stakeholders, applying these in a novel way to categorize and prioritize patients in a unique hierarchical fashion. The guidelines were primarily premised on patients being transplantable. We examined whether the revised guidelines enhanced fairness of dialysis resource allocation. This is a descriptive study of 1101 end stage kidney failure patients presenting to a tertiary renal unit in a middle-income country, evaluated for dialysis treatment over a seven-year period. The Assessment Committee used the accountability for reasonableness-based guidelines to allocate patients to one of three assessment groups. Category 1 patients were guaranteed renal replacement therapy, Category 3 patients were palliated, and Category 2 were offered treatment if resources allowed. Only 25.2% of all end stage kidney disease patients assessed were accepted for renal replacement treatment. The majority of patients (48%) were allocated to Category 2. Of 134 Category 1 patients, 98% were accepted for treatment while 438 (99.5%) Category 3 patients were excluded. Compared with those palliated, patients accepted for dialysis treatment were almost 10 years younger, employed, married with children and not diabetic. Compared with our previous selection process our current method of priority setting based on procedural fairness arguably resulted in more equitable allocation of treatment but, more importantly, it is a model that is morally, legally and ethically more defensible

Randomized, double-blind, placebo-controlled trial of arimoclomol in rapidly progressive SOD1 ALS

Objective: To examine the safety and tolerability as well as the preliminary efficacy of arimoclomol, a heat shock protein co-inducer that promotes nascent protein folding, in patients with rapidly progressive SOD1 amyotrophic lateral sclerosis (ALS). Methods: This was a double-blind, placebo-controlled trial in which patients with rapidly progressive SOD1-mutant ALS were randomized 1:1 to receive arimoclomol 200 mg tid or matching placebo for up to 12 months. Study procedures were performed using a mix of in-person and remote assessments. Primary outcome was safety and tolerability. Secondary outcome was efficacy, with survival as the principal measure. Additional efficacy measures were the rates of decline of the Revised ALS Functional Rating Scale (ALSFRS-R) and percent predicted forced expiratory volume in 6 seconds (FEV6), and the Combined Assessment of Function and Survival (CAFS). Results: Thirty-eight participants were randomized. Thirty-six (19 placebo, 17 arimoclomol) were included in the prespecified intent-to-treat analysis. Apart from respiratory function, groups were generally well-balanced at baseline. Adverse events occurred infrequently, and were usually mild and deemed unlikely or not related to study drug. Adjusting for riluzole and baseline ALSFRS-R, survival favored arimoclomol with a hazard ratio of 0.77 (95% confidence interval [CI] 0.32–1.80). ALSFRS-R and FEV6 declined more slowly in the arimoclomol group, with treatment differences of 0.5 point/month (95% CI −0.63 to 1.63) and 1.24 percent predicted/month (95% CI −2.77 to 5.25), respectively, and the CAFS similarly favored arimoclomol. Conclusions: This study provides Class II evidence that arimoclomol is safe and well-tolerated at a dosage of 200 mg tid for up to 12 months. Although not powered for therapeutic effect, the consistency of results across the range of prespecified efficacy outcome measures suggests a possible therapeutic benefit of arimoclomol. Clinicaltrials.gov identifier NCT00706147. Classification of evidence This study provides Class II evidence that arimoclomol is safe and well-tolerated at a dosage of 200 mg tid for up to 12 months. The study lacked the precision to conclude, or to exclude, an important therapeutic benefit of arimoclomol

Misalignment between perceptions and actual global burden of disease: evidence from the US population

Significant funding of health programs in low-income countries comes from external sources, mainly private donors and national development agencies of high-income countries. How these external funds are allocated remains a subject of ongoing debate, as studies have revealed that external funding may misalign with the underlying disease burden. One determinant of the priorities set by both private donors and development agencies is the perceptions of populations living in high-income countries about which diseases are legitimate for global health intervention. While research has been conducted on the priorities expressed by recipient communities, relatively less has been done to assess those of the donating country. To investigate people's beliefs about the disease burden in high-income countries, we compared publicly available data from U.S. surveys of people's perceptions of the leading causes of death in developing countries against measures of the actual disease burden from the World Health Organization. We found little correlation between the U.S. public's perception and the actual disease burden, measured as either mortality or disability-adjusted life years. While there is potential for reverse causality, so that donor programs drive public perceptions, these findings suggest that increasing the general population's awareness of the true global disease burden could help better align global health funding with population health needs