Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial

This article examines the intersection of compassion and rights, and how the two concepts are constituted and wielded in the context of human clinical trials. Doron, an ALS patient who was recruited to a clinical trial, believed that he had the right to post-trial treatment according to the wording...

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Autor principal:	Hedva Eyal
Formato:	article
Lenguaje:	EN
Publicado:	University of Edinburgh Library 2021
Materias:	clinical trials compassion biotechnology industry rights israel Anthropology GN1-890 Medicine (General) R5-920
Acceso en línea:	https://doaj.org/article/996f0c2c28e047a692f34ac6670f8b70
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id	oai:doaj.org-article:996f0c2c28e047a692f34ac6670f8b70
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spelling	oai:doaj.org-article:996f0c2c28e047a692f34ac6670f8b702021-11-08T12:34:28ZOut of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial2405-691X10.17157/mat.8.3.5102https://doaj.org/article/996f0c2c28e047a692f34ac6670f8b702021-09-01T00:00:00Zhttp://www.medanthrotheory.org/article/view/5102https://doaj.org/toc/2405-691XThis article examines the intersection of compassion and rights, and how the two concepts are constituted and wielded in the context of human clinical trials. Doron, an ALS patient who was recruited to a clinical trial, believed that he had the right to post-trial treatment according to the wording of an informed consent form he signed before joining the trial. However, the biotech company sponsoring the trial instead offered him ‘compassionate use’ access, i.e., access at its discretion rather than as a legal obligation on its part. I argue that under a ‘bioeconomy of value’, the human clinical trial regime has been subordinated to two competing discourses: that of compassion and that of patients’ rights. Both are interpreted and deployed differently by the different stakeholders, namely the patient, the biotech company, and the medical establishment. I argue that the adoption, by bioeconomy actors, of a social value discourse of compassion is designed to preserve a hierarchy that deprives the patient of their power and their rights. Simultaneously, this practice highlights the power of the biotech industry as a moral partner and ‘saviour’ in its relationship with patient organisations and its role as a medical–scientific actor in the Israeli healthcare system.Hedva EyalUniversity of Edinburgh Libraryarticleclinical trialscompassionbiotechnology industryrightsisraelAnthropologyGN1-890Medicine (General)R5-920ENMedicine Anthropology Theory, Vol 8, Iss 3, Pp 1-23 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	clinical trials compassion biotechnology industry rights israel Anthropology GN1-890 Medicine (General) R5-920
spellingShingle	clinical trials compassion biotechnology industry rights israel Anthropology GN1-890 Medicine (General) R5-920 Hedva Eyal Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
description	This article examines the intersection of compassion and rights, and how the two concepts are constituted and wielded in the context of human clinical trials. Doron, an ALS patient who was recruited to a clinical trial, believed that he had the right to post-trial treatment according to the wording of an informed consent form he signed before joining the trial. However, the biotech company sponsoring the trial instead offered him ‘compassionate use’ access, i.e., access at its discretion rather than as a legal obligation on its part. I argue that under a ‘bioeconomy of value’, the human clinical trial regime has been subordinated to two competing discourses: that of compassion and that of patients’ rights. Both are interpreted and deployed differently by the different stakeholders, namely the patient, the biotech company, and the medical establishment. I argue that the adoption, by bioeconomy actors, of a social value discourse of compassion is designed to preserve a hierarchy that deprives the patient of their power and their rights. Simultaneously, this practice highlights the power of the biotech industry as a moral partner and ‘saviour’ in its relationship with patient organisations and its role as a medical–scientific actor in the Israeli healthcare system.
format	article
author	Hedva Eyal
author_facet	Hedva Eyal
author_sort	Hedva Eyal
title	Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
title_short	Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
title_full	Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
title_fullStr	Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
title_full_unstemmed	Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial
title_sort	out of compassion or out of rights? a story about an amyotrophic lateral sclerosis (als) human clinical trial
publisher	University of Edinburgh Library
publishDate	2021
url	https://doaj.org/article/996f0c2c28e047a692f34ac6670f8b70
work_keys_str_mv	AT hedvaeyal outofcompassionoroutofrightsastoryaboutanamyotrophiclateralsclerosisalshumanclinicaltrial
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Out of Compassion or Out of Rights? A Story about an Amyotrophic Lateral Sclerosis (ALS) Human Clinical Trial

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