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 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

Humanitarian Aid, Security and Ethics: The Rise of a New Humanitarian Governance at Home

The article examines the relationship between humanitarianism, security, and ethics in the case of the provision of medical humanitarian aid by Israel to casualties from the Syrian civil war, between 2013 and 2018. We argue that this humanitarian project differs from the type of humanitarian intervention commonly seen in conflict zones and can be identified as a new form of humanitarian governance. Our case study deals with humanitarian care provided in the country of origin of the medical and security forces involved, rather than in the country of the injured. In this articulation of humanitarianism at home a new nature of life governance and new subjects of security, emerge. We argue that the politics of life shifts and is subordinated to two different ethical frameworks founded on two different logics: that of the human (as in the type of medical treatment seen in traditional humanitarian aid provision, which is often related to short-term immediate treatment) and that of the citizen (the standard of care provided to all official residents of Israel. The conflict between these two moralities, the shifting standard of medical treatment, and the new medical-security space – together, raise a new set of ethical and political questions

Ethics and regulation of inter-country medically assisted reproduction:A call for action

The proliferation of medically assisted reproduction (MAR) for the treatment of infertility has brought benefit to many individuals around the world. But infertility and its treatment continue to be a cause of suffering, and over the past decade, there has been a steady growth in a new global market of inter-country medically assisted reproduction (IMAR) involving 'third-party' individuals acting as surrogate mothers and gamete donors in reproductive collaborations for the benefit of other individuals and couples who wish to have children. At the same time there is evidence of a double standard of care for third-party women involved in IMAR, violations of human rights of children and women, and extreme abuses that are tantamount to reproductive trafficking. This paper is the report of an inter-disciplinary working group of experts who convened in Israel to discuss the complex issues of IMAR. In Israel too IMAR practices have grown rapidly in recent years, mainly because of restrictions on access to domestic surrogacy for same sex couples and a chronically insufficient supply of egg cells for the treatment of couples and singles in need. Drawing upon local expertise, the paper describes documented practices that are harmful, suggests principles of good practice based on an ethic of care, and calls for action at the international, national and professional levels to establish a human rights based system of international governance for IMAR based on three regulatory models: public health monitoring, inter-country adoption, and trafficking in human beings, organs and tissues.</p