10_Ethical Variability - Petryna

10_Ethical Variability - Petryna - American Ethnologist n...

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indicators of whole groups, however formed or damaged by social and economic context, are enfolded into regimes of international and local forms of protection, in which ethics becomes a ‘‘workable document.’’ The issue of human-subjects protection, thus, moves beyond scripted procedural issues of informed consent and into questions of legal capacities and the aggregate human conditions of which they are generative (Marks 2000). What alternatives are there to counteract perceived widespread abuse and inadequate protection of research subjects? What work is to be done locally, scientifically, and administratively to link biologies back to regimes of protection? In the Chernobyl context, I documented how, in the newly independent Ukrainian state, radiation re- search clinics and nongovernmental organizations medi- ated an informal economy of illness and claims to what I refer to as a ‘‘biological citizenship’’—a massive demand for but selective access to a form of social welfare based on scientific and legal criteria that both acknowledge injury and compensate for it. Such struggles over a biological citizenship took place in a context of fundamental losses (related to employment and state protections against in- flation, widespread corruption, and a corrosion of legal and political categories). 34 Assaults on health became the coinage through which sufferers staked claims for biomed- ical resources, social equity, and human rights.
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  • Spring '10
  • McGrand
  • Clinical trial, Informed consent, human-subjects research, clinical research data, human-subjects research industry

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