Between Past and Future: An Exercise in Politics and DTCGT Open Access

Edwards, Aric E (2013)

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Between Past and Future: An Exercise in Politics and DTCGT

By Aric Edwards

Until recently, the US had a "wild west" scenario regarding Direct to Consumer Genetic Testing quality control and consumer protection: anything goes. Yet the bioethical community has started to help create guidance for various governmental agencies about DTCGT. Right now, consumers can purchase DTCGT, but the FDA has begun to have "private" dialogues with DCTGT's various manufacturers. This may mean that DTCGT is susceptible to the FDA's oversight and will result in removing DTCGT from the market with no consumer input.

Hannah Arendt has been praised as a purveyor of political philosophy since her text "Origins of Totalitarianism" was published in 1951. Arendt's perspective and philosophy can help shed light into new regions for bioethical thought. Within the context of "institutionalized" bioethics, or the field of biomedical ethics, there is a link between what occurs in the political realm and the course of biomedical conversations. Arendt allows us to maneuver fluidly between the two; and, in particular, her work can be applied to the topic of DTCGT.

In this paper, I will show how several key points in Arendt's system can be used when discussing DTCGT. Experts and their aforementioned "private" dialogues have removed citizens from the DTCGT discussion. Forcing individuals to the masses category hinders them by not allowing access to the polis -- the forum where active citizens convene to discuss the issues. With many individuals being made superfluous, experts make up the majority of those consorting in the polis but non-experts are most affected by DTCGT.

Arendt's development of an "active citizenry," would help to facilitate an open dialogue about these tests. Rather than allowing bureaucratic systems control the gates of the access, a group of individuals who bring this discussion to their fellow citizens would be ideal. An active citizenry is needed to determine its own choices and preferences about accessing DTCGT. With an active citizenry, individuals determine their genetic information's meaning and creating standards and precedents for how to handle the management/regulation of these new tests.

Table of Contents

Chapter 1: Introducing the Complexity of DTCGT...Page 1

Chapter 2: Arendt's Biopolitics...Page 22

Chapter 3: Exploring the New Human Condition...Page 50

Bibliography...Page 78

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