This comment on Chalgoumi et al.’s article “Information Privacy for Technology Users with Intellectual and Developmental Disabilities: Why Does It Matter?” focuses on the concept of autonomy in order to expand the scope of the ethical discussion. First we explore the conceptual and practical relations between privacy and autonomy. Following this, we address the issue of underfunding of information technology for persons with intellectual and developmental disabilities in terms of distributive justice and provide some potential policy solutions.

Task shifting is increasingly used to address human resource shortages impacting HIV service delivery in low- and middle-income countries. By shifting basic tasks from higher- to lower-trained cadres, such as Community Health Workers, task shifting can reduce overhead costs, improve community outreach, and provide efficient scale-up of essential treatments like antiretroviral therapies. Although there is rich evidence outlining positive outcomes that CHWs bring into HIV programs, important questions remain over their place in service delivery. These challenges often reflect concerns over (...) whether CHWs can mitigate HIV through a means that does not overlook the ethical and practical constraints that undergird their work. Ethical and practical guidance thus needs to become the cornerstone of CHW deployment. This paper analyzes such challenges through the lens of Ethical Principlism. We examined papers identifying substantive and ethical challenges impacting CHWs as they provide HIV services in low- and middle-income contexts. To do this, we analyzed papers written in English and published from year 2000 or later. These articles were identified using MEDLINE, Cochrane Database of Systematic Reviews, and Google Scholar databases. In total, 465 articles were identified, 78 of which met our inclusion criteria. Article reference lists and grey literature were also examined. CHWs experience specific challenges while carrying out their duties, such as conducting emotionally- and physically-demanding tasks with often inadequate training, supervision and compensation. CHWs have also been poorly integrated into health systems, which not only impacts quality of care, but can hinder their prospects for promotion and lead to CHW disempowerment. As we argue, these challenges can be addressed if a set of ethical principles is prioritized, which specifically entail the principles of respect for persons, justice, beneficence, proportionality and cultural humility. CHWs play a crucial role in HIV service delivery, yet the ethical challenges that can accompany their work cannot be overlooked. By prioritizing ethical principles, policymakers and program implementers can better ensure that CHWs are combatting HIV through a means that does not exploit or take their critical role within service delivery for granted. (shrink)

For years now, autonomy has been discussed as one of the central values in health care. Understood as self-realization, it is opposed to paternalism which is conceived as an intolerable occurrence of heteronomy. Although different concepts have been developed to nuance this opposition, when it comes to health care discourse, heteronomy is still the enemy of autonomy. In our article, we defend the thesis that autonomy is only achievable as heteronomy. We are not arguing for an expansion of the meaning (...) of autonomy, but are attempting to conduct an analysis which lays bare the ‘disrupting’ attendance of heteronomy within the principle of autonomy. Autonomy does not begin where heteronomy ends, but can only begin if heteronomy is already involved. To emphasize this, we prefer to elaborate a new concept: ‘oughtonomy’. This concept is inspired by Jacques Derrida’s distinction between ‘difference’ and ‘differance’. We will develop the concept of oughtonomy from a deconstructive reading of Kant’s idea of autonomy, inspired by philosophers such as Jacob Rogozinski, Jean-Luc Nancy and others. In addition to a first exploration of this concept, this article also discusses the possible consequences of oughtonomy for current debates concerning health care. Our quest for a new understanding of autonomy is motivated by the concern that, although the accent on autonomy as self-realization and independence has many advantages, we should also bear in mind the countless disadvantages. (shrink)

Jean-Luc Nancy has not written a single work dedicated entirely to the problem of justice or related themes, but nevertheless, topics such as right, justice, judgement or law appear in various places in Nancy’s work. Besides ‘Lapsus judicii’ and ‘Dies irae’, the theme of justice particularly comes up and in two small texts: ‘Cosmos Basileus’ and ‘Human Excess’. These texts are crucial to understand Nancy’s point of view in juridical matters but are largely left aside in secondary literature, probably because (...) of their enigmatic character. In this article we explore the cluster of juridical questions in ‘Cosmos Basileus’ and ‘Human Excess’ and argue why today, for Nancy, an ontological perspective is needed to cope with juridical questions. For him, justice is in the first place bound up with the fact of our co-existence, with what is unique about every existence in its co-existence with other creations. He claims, first, that freedom is responsibility and the act of doing justice to existence and, second, that sharing the world is the law of the world. We will discuss these two claims and conclude with Nancy’s plead for ontological reflection within juridical topics. (shrink)

some 20 years. Yet the ethical issues surrounding the disclosure of positive HIV status have not been examined comprehensively. This report examines the ethics behind the disclosure of HIV-positive status primarily or individuals to their sex partners, and for health care practitioners to a patient’s sex partner when the patient is unwilling to disclose. Relevant rights and ethical principles are analysed, including the rights to: self-preservation; privacy and confidentiality; and the bioethical principles of respect for autonomy, beneficence, non-maleficence, and justice. (...) Historic and contemporary individual rights that people living with HIV have regarding disclosure are emphasised, especially in adverse circumstances, where ethics can support non-disclosure based on the right to self-preservation. Rights declarations and current disclosure guidelines for health care practitioners from several international and South African medical organisations also are reviewed. Of key importance to disclosure decisions are the specific situations of individuals in climates rife with stigma toward, and discrimination against, PLHIV, existing more or less worldwide. The potential negative impacts of disclosure are the basis for disclosure decisions of PLHIV. Research study results show that the negative impacts of disclosure can be severe for individuals, ranging from divorce or abandonment to community ostracism and even to murder. Relevant current theories of social justice related to HIV disclosure also are discussed. A conclusion is reached that, by decreasing stigma and discrimination against PLHIV and protecting individual rights related to HIV disclosure, prevention behaviours will be practised more widely, including ‘positive prevention’ by PLHIV and higher rates of disclosure. The eventual result will be the long-term public health goal of decreased spread of HIV. (shrink)