Ciently understand the nature of experiments

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ciently understand the nature of experiments conducted on them to provide genuine informed consent. The term ‘fourth-world’ refers therefore to any disenfranchised groups that lack agency. Even subpopulations can be reduced to fourth-world status when social infrastructures deteriorate. Hurricane Katrina, for example, made clear that once human agency is lost, people can no longer empower themselves. After all, members of poor communities cannot advocate for services when the level of social capital necessary to get a so-called needs designation—a formal petition for help—does not exist. Viewed this way, health rights apply to cultures as well as individuals. When fourth-world people are thus disadvantaged, they might not only lack agency, they might also be unknowingly victimised. Many clinical trials, for instance, are done in isolated groups that are thought to provide genetically pure samples. 174 Therefore, when data (blood samples, DNA, or experimental cell lines) are collected from such groups, the question of who owns that biological and intellectual property can be hotly contested. Indeed, one of the most important public debates about indigenous rights focused specifically on the possible abuse of rights of a certain culture versus the possible benefits gained from its indigenous biological knowledge by scientists. 175 Here, the question of agency becomes crucial to understanding the extent to which the right to self-determination can exist for groups. Who does and does not have agency extends not just to the right to individual self- determination, but also to the recognition that groups also can have or lack agency.
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The Lancet Commissions Vol 384 November 1, 2014 1625 the socially disadvantaged? Writing on the state of refugees in contemporary France, Fassin cites a startling disjunction between humanitarian law and actual practice: “In 2004, with 58,550 applications submitted, France became the industrialized country with the highest recorded number of requests for asylum, ahead of the United States, the United Kingdom, and Germany, which until then had been the top three countries for refugees. Yet, in the same year, the rate of acceptance of applications…reached its lowest level at 9·3%. Thus, if we count not the applications submitted but the actually granted refugee status, France…was far behind not only Pakistan, Iran, Tanzania, and Chad…but also Germany, the United States, and the United Kingdom.” 122 Fassin is acerbic in his criticism: “as with other nations, France is more generous the less it has to bear the cost of its generosity”. 122 Here, Bourdieu’s idea of symbolic violence moves the discussion beyond inequality to a consideration of how violence inadvert- ently occurs when disadvantaged people are wholly disempowered. Allowing for variation in both degrees and forms of agency, Bourdieu 176 shows how an individual’s so-called habitus, or mindset, extends to or limits the predisposition to act—how violence, therefore, takes place, even if passively.
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  • Summer '18
  • Jeanne Hughes
  • Lancet

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