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Potentializing Newborn Screening

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Virtually all 4.25 million babies born annually in the United States are screened for more than 50 rare genetic conditions. In a country plagued with widespread health-service access problems, this remarkable public health achievement depends on policy visions of newborn screening as the linchpin of secondary prevention and saving children's lives. Based on ethnographic research and drawing from a semiotic framework, we illustrate that newborn screening has had a much wider range of effects in the clinic than those anticipated by policy makers. How does the disconnect between policy potential and clinical experience affect the technology? We demonstrate that only some discrepancies are considered in policy circles and that instead, parents, geneticists, and policy makers renew visions of potentiality that preserve the technology's benefits in spite of evidence to the contrary. While rearticulating the potential of technologies may help actors cope with situations that do not measure up to expectations, the inevitable cost of reformulating potentiality once a technology has been implemented is that some accumulated experiences will be rendered invisible. © 2013 by The Wenner-GrenFoundation for Anthropological Research. All rights reserved.

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