What type of inclusion does epistemic injustice require?
Bridget Pratt and Jantina de Vries1 have made an insightful contribution to enhancing epistemic justice in global health ethics. Their elaboration details intellectual (external) exclusion—described as non-representation—across three levels, and at its core, proposes inclusion to rectify this. To extend this work, we contend that it is worth probing the nuances and challenges associated with inclusion as a response to epistemic injustice. These include (A) the meaning of inclusion outside binary vocabularies of north and south; (B) the possibility of forms of inclusion that produce exclusion and (C) inclusion a...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Nyamnjoh, A.-N., Ewuoso, C. Tags: Commentary Source Type: research
Intercultural global bioethics
Over the last two decades or so, the need to decolonise bioethics and make it inclusive, equitable and accommodative of voices from the traditionally marginalised global South has received increasing attention in academic scholarship. The recent publication by Pratt and de Vries offers a very comprehensive critical analysis and thoughtful overview of the issue, using global health ethics as its starting point.1 I fundamentally agree with their characterisation of the issue as an ‘epistemic justice’ problem. I further find their recommended conceptual and practical ideas for measuring epistemic injustice and eth...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Frimpong-Mansoh, Y. Tags: Commentary Source Type: research
Knowledge from the global South is in the global South
In social systems or spaces, distance between the centre and the periphery breeds epistemic injustice. There are growing accounts of epistemic injustice in health-related fields, as in the article by Pratt and de Vries.1 The title of the article asks: ‘Where is knowledge from the global South?’ Like me, you may answer by saying: ‘Knowledge from the global South is in the global South’. That answer says a lot about how we right epistemic injustice done to actors in the global South or the periphery, including in health ethics. Pratt and de Vries identified four sets of actors (individuals, institutio...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Abimbola, S. Tags: Commentary Source Type: research
Some barriers to knowledge from the global south: commentary to Pratt and de Vries
Pratt and de Vries1 pose an important and uncomfortable question to all stakeholders in the global bioethics space. If global bioethics as they define it is ‘the ethics of public health and healthcare problems that are characterised by a global level effect or that require action beyond individual countries, and the ethics of research related to such problems’, one would expect justice and inclusivity to be among the ethical priorities. Yet, Pratt and de Vries carefully demonstrate how different forms of epistemic injustice and coloniality are embedded in the structure, generation of knowledge and praxis of glo...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Atuire, C. A. Tags: Commentary Source Type: research
Where is knowledge from the global South? An account of epistemic justice for a global bioethics
The silencing of the epistemologies, theories, principles, values, concepts and experiences of the global South constitutes a particularly egregious epistemic injustice in bioethics. Our shared responsibility to rectify that injustice should be at the top of the ethics agenda. That it is not, or only is in part, is deeply problematic and endangers the credibility of the entire field. As a first step towards reorienting the field, this paper offers a comprehensive account of epistemic justice for global health ethics. We first introduce several different conceptions of justice and decolonisation in relation to knowledge, pu...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Pratt, B., de Vries, J. Tags: Open access Feature article Source Type: research
UK Research Ethics Committees review of the global first SARS-CoV-2 human infection challenge studies
In conclusion, we have tried to make decisions in good faith. We know there is controversy and disagreement and reasonable people may feel we have made the wrong decision. A more detailed analysis, built on the WHO guidance, is provided in online supplemental material. (Source: Journal of Medical Ethics)
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Davies, H., On behalf of the HRA Specialist Research Ethics Committee Tags: COVID-19 Current controversy Source Type: research
Heritable human genome editing is 'currently not permitted, but it is no longer 'prohibited: so says the ISSCR
The Guidelines for Stem Cell Research and Clinical Translation, recently issued by the International Society for Stem Cell Research (ISSCR), include a number of substantive revisions. Significant changes include: (1) the bifurcation of ‘Category 3 Prohibited research activities’ in the 2016 Guidelines into ‘Category 3A Research activities currently not permitted’ and ‘Category 3B Prohibited research activities’ in the 2021 guidelines and (2) the move of heritable human genome editing research out of the ‘prohibited’ category and into the ‘currently not permitted’ ...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Baylis, F. Tags: Current controversy Source Type: research
Ethics of non-therapeutic research on imminently dying patients in the intensive care unit
Non-therapeutic research with imminently dying patients in intensive care presents complex ethical issues. The vulnerabilities of the imminently dying, together with societal disquiet around death and dying, contribute to an intuition that such research is beyond the legitimate scope of scientific inquiry. Yet excluding imminently dying patients from research hinders the advancement of medical science to the detriment of future patients. Building on existing ethical guidelines for research, we propose a framework for the ethical design and conduct of research involving the imminently dying. To enable rapid translation to p...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Murphy, N., Weijer, C., Debicki, D., Laforge, G., Norton, L., Gofton, T., Slessarev, M. Tags: Open access Clinical ethics Source Type: research
Lessons learned from the Last Gift study: ethical and practical challenges faced while conducting HIV cure-related research at the end of life
The Last Gift is an observational HIV cure-related research study conducted with people with HIV at the end of life (EOL) at the University of California San Diego. Participants agree to voluntarily donate blood and other biospecimens while living and their bodies for a rapid research autopsy postmortem to better understand HIV reservoir dynamics throughout the entire body. The Last Gift study was initiated in 2017. Since then, 30 volunteers were enrolled who are either (1) terminally ill with a concomitant condition and have a prognosis of 6 months or less or (2) chronically ill with multiple comorbidities and nearing the...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Kanazawa, J., Rawlings, S. A., Hendrickx, S., Gianella, S., Concha-Garcia, S., Taylor, J., Kaytes, A., Patel, H., Ndukwe, S., Little, S. J., Smith, D., Dube, K. Tags: Open access Clinical ethics Source Type: research
Global health justice: epistemic theory and pandemic practice
What does justice in global health bioethics require, and how might we achieve it? Two important contributions to this issue of the Journal address theoretical and practical aspects of these questions in different but complementary ways. From their careful analysis of ‘epistemic injustice’ in global health ethics (‘injustice as it applies to knowledge’ which in one way or another puts a person at a disadvantage), Pratt and de Vries1 conclude that to achieve justice, much depends on what is meant by ‘we’ (‘the people designing, conducting and using knowledge from research’) as...
Source: Journal of Medical Ethics - April 20, 2023 Category: Medical Ethics Authors: Boyd, K. Tags: Editorial Source Type: research
Ethics briefing
In December 2022, the Office of the National Data Guardian (NDG)1 for health and social care in England published new guidance: What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care.2 Research in the UK consistently demonstrates that for the public to consider a secondary use3 of health and care data appropriate and acceptable, it must deliver a benefit back to the public.4 The aim of the guidance is to help organisations to interpret and demonstrate the public good from their work more comprehensively, accurately, and consistently. T...
Source: Journal of Medical Ethics - March 23, 2023 Category: Medical Ethics Authors: Mussell, R., Brannan, S., English, V., Harrison, C. A., Sheather, J. C. Tags: Ethics briefing Source Type: research
Different approach to medical decision-making in difficult circumstances: Kittays Ethics of Care
The onset of the COVID-19 pandemic has necessitated advances in bioethical approaches to medical decision-making. This paper develops an alternative method for rationing care during periods of resource scarcity. Typical approaches to triaging rely on utilitarian calculations; however, this approach introduces a problematic antihumanist sentiment, inviting the proposition of alternative schemata. As such, we suggest a feminist approach to medical decision-making, founded in and expanding upon the framework of Eva Kittay’s Ethics of Care. We suggest that this new structure addresses the issue of medical decision-making...
Source: Journal of Medical Ethics - March 23, 2023 Category: Medical Ethics Authors: Butchart, L., Krumenacker, K., Baig, A. Tags: Student essay Source Type: research
Epistemic injustice, children and mental illness: reply to comments
I’m grateful to the commentators for their thoughtful and thought-provoking replies. Psychiatric service-users often feel disempowered relative to a profession (psychiatry) and so sometimes enlist the aid of another profession (philosophy) to redress the balance. All well and good, but it is vital in this context not to set one’s critical faculties on one side. Although Dr Kious1 thinks that is just what I have done, what I was trying to do was to call a halt to the uncritical use of a piece of philosophy, the concept of testimonial injustice. It is a fine tool in many contexts, it is the newest tool in the all...
Source: Journal of Medical Ethics - March 23, 2023 Category: Medical Ethics Authors: Harcourt, E. Tags: Response Source Type: research
Against visitor bans: freedom of association, COVID-19 and the hospital ward
To ban or significantly restrict visitors for patients in hospital could seem to be simply a sensible and easy precaution to take during a pandemic: a policy that is unpopular, perhaps, and even unfortunate, but not something that wrongs anyone. However, I argue that in fact such restrictions on visitors infringe upon a fundamental right, to freedom of association. While there may still be permissible restrictions on visitors, making the case for these becomes highly demanding. One common way to understand the purpose of the fundamental liberties is as protecting us from interference in a core set of freedoms, even when su...
Source: Journal of Medical Ethics - March 23, 2023 Category: Medical Ethics Authors: McTernan, E. Tags: COVID-19 Original research Source Type: research
Pandemic justice: fairness, social inequality and COVID-19 healthcare priority-setting
A comprehensive understanding of the ethics of the COVID-19 pandemic priorities must be sensitive to the influence of social inequality. We distinguish between ex-ante and ex-post relevance of social inequality for COVID-19 disadvantage. Ex-ante relevance refers to the distribution of risks of exposure. Ex-post relevance refers to the effect of inequality on how patients respond to infection. In the case of COVID-19, both ex-ante and ex-post effects suggest a distribution which is sensitive to the prevalence social inequality. On this basis, we provide a generic fairness argument for the claim that welfare states ought to ...
Source: Journal of Medical Ethics - March 23, 2023 Category: Medical Ethics Authors: Nielsen, L., Albertsen, A. Tags: COVID-19 Original research Source Type: research
