U.S. versus Europe concerning the building of infrastructure built so that to make new genetic knowledge useful

(Third in a series on "Teaching about scientific and political change in times of crisis")

A Collaborative Exploration (CE) in which participants consider the "U.S. versus Europe concerning the building of infrastructure built so that to make new genetic knowledge useful" at the same time as we explore and share emerging theory and research to inform and improve "Teaching about scientific and political change in times of crisis." In particular, we might chew on whether we have working under an outdated progressive imaginary about citizen engagement in science working with developments in social institutions to provide for the welfare of the populace.

Applications are sought from teachers, researchers, graduate students, and activists who want to think more about the CE topic in relation to the theme of the series. Newcomers and return participants are welcome.
(Additional CEs in the series: Jan-Feb, Feb-Mar, Apr-May 2018)
The use of genetic information always requires social infrastructure (Edwards 2003, Taylor 2009). Once attention is given to the actual or implied social infrastructure, the prospect of reshaping life using human genetic information raises more questions than it answers.
For example, consider the case of phenylketonuria (PKU). Until the 1960s people with two PKU genes (i.e., homozygous) always suffered severe mental retardation. But now the brain damage can be averted by a special diet free of the amino acid phenylalanine following detection of those newborns having high phenylalanine levels. Yet, as Paul's (1998) history of PKU screening describes, the certainty of severe cognitive impairment has been replaced by a chronic disease with a new set of problems. Screening of newborns became routine in the United States quite rapidly during the 1960s and 70s, but there remains an ongoing struggle in the USA to secure health insurance coverage for the special diet and to enlist family and peers to support PKU individuals staying on that diet through adolescence and into adulthood. For women who do not maintain the diet well and become pregnant, high phenylalanine levels adversely affect the development of their non-PKU fetuses; such "maternal PKU" is a public health concern that had not previously existed. (See also Panofsky 2011 and Tabor and Lappé 2011.)

Imagine then that we are charged with developing a research prospectus for collaboration with Europeans on comparative studies of policy related to infrastructure development around new genetic technologies. The infrastructure theme invites us to think about a number of issues, such as:


Centro de Estudos Sociais (2005) Identifying Trends in European Medical Space: Contribution of European Social and Human Sciences. Coimbra, Portugal: Centro de Estudos Sociais (copies available from host of CE)
Edwards, P. N. (2003). Infrastructure and modernity: Force, time, and social organization in the history of sociotechnical systems. Modernity and Technology. T. J. Misa, P. Brey and A. Feenberg. Cambridge, MA, MIT Press: 185-225.
Panofsky, A. (2011). Generating sociability to drive science: Patient advocacy organizations and genetics research. Social Studies of Science, 41, 31–57.
Paul, D. (1998). The history of newborn phenylketonuria screening in the U.S. Final Report of the Task on Genetic Testing. Baltimore, Johns Hopkins University Press: 1-13. http://biotech.law.lsu.edu/research/fed/tfgt/appendix5.htm (viewed 14 Jan 2004)
Tabor, H. K., & Lappé, M. D. (2011). The Autism Genetic Resource Exchange: Changing Pace, Priorities, and Roles in Discovery Science. In W. Burke, S. Goering, & S. B. Trinidad (Eds.), Achieving Justice in Genomic Translation: Re-Thinking the Pathway to Benefit pp. 56-71). New York: Oxford University Press.
Taylor, P. J. (2009). "Infrastructure and Scaffolding: Interpretation and Change of Research Involving Human Genetic Information." Science as Culture 18(4): 435-459.
Yearley, S. (2008). Section on GM plants in "Nature and the Environment in Science and Technology Studies." The Handbook of Science and Technology Studies. E. Hackett, O. Amsterdamska, M. Lynch and J. Wajcman. Cambridge, MA, MIT Press: 930-939.