Abstract
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.
Highlights
Doron1 was in his 30s when he found out that he had the disease Amyotrophic Lateral Sclerosis (ALS)
It is based on fieldwork conducted between 2013 and 2017, which included a full year of observations at two institutional review boards (IRBs) in hospitals and semi-structured interviews with 62 key players in the field of human clinical trials
It prompts questions concerning tensions between the biomedical industry and healthcare, individuals and collectives. Confronted with these tensions, the patient must defend their rights against competing discourses advanced by the industry and the illness community. This case reveals the broader context of constructed and contested social values, with both economic and medical actors seeking to expand or narrow them according to their vested interests
Summary
Doron was in his 30s when he found out that he had the disease Amyotrophic Lateral Sclerosis (ALS). The practices of the pharmaceutical industry have been described as the ‘pharmaceuticalisation of healthcare’ This has been achieved through the successful reinforcement of global trade rules, in terms defined by the market, shaping the international health agenda (van der Geest, Whyte, and Hardon 1996; Petryna, Lakoff, and Kleinman 2006; Biehl 2007; Sariola et al 2015). As patients/clinical trial subjects constitute themselves as being subject to human rights (Biehl 2006; Wehling 2011; Rabinow 1996) and to the rights of recovery (Petryna 2013), so pharmaceutical companies present themselves as being committed to human rights and social justice Such practices have manifested repeatedly in recent years. The first, the ‘sponsor’s statement of commitment’ (SSC), is an aspect of the regulation of clinical trials, is part of the Israeli Ministry of Health
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