Policy and practices around new genetic technologies, here and there

(part of the Spring 2014 Collaborative Explorations: Science in a Changing World series)

A Collaborative Exploration (CE) in which participants develop research proposals for international collaboration comparing policy and practices around new genetic technologies.
  • In brief, CEs are an extension of Problem- or Project-Based Learning (PBL) and related approaches to education in which participants address a scenario or case in which the problems are not well defined, shaping their own directions of inquiry and developing their skills as investigators and prospective teachers (in the broadest sense of the word). (For more background, read the prospectus.)
  • If you want to know what a CE requires of you, review the expectations and mechanics.
    • on hangout for 1 hour each week in March at 4pm (US EST), Thursday 6, 13, 20, 27. (Note: Summer time starts in USA March 9). The URL for the first hangout will be provided only to those who register (via http://bit.ly/CEApply), which entails making a commitment to attend that 1st session and at least 2 of the other 3 hangouts.
  • If you are wondering how to define a meaningful and useful approach to the topic, let us present a scenario for the CE and hope this stimulates you to apply to participate. We will then let CE participants judge for themselves whether their inquiries are relevant.
  • Intended outcomes for participants of this CE are of two kinds:
    • a) tangible: contribute to a research proposal for international collaboration comparing policy and practices around new genetic technologies; and
    • b) experiential: being impressed at how much can be learned with a small commitment of time using the CE structure to motivate and connect participants.

Scenario
The final meeting of a European Commission project, "Identifying Trends in European Medical Space," is documented in a collection of short articles presenting key terms, questions, methods, and initial results from studies of a wide range of developments in biomedical sciences (Centro de Estudos Sociais 2005). Almost every article presents a case that would be interesting to compare-and-contrast with corresponding developments as they are playing out in the political space of the United States. This has led to an idea of promoting collaboration and comparative studies of policy around research and application of new genetic technologies, where the promise of reshaping life using human genetic information seems to raise more questions than the scientists choose to address.

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 retardation 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.

Possible steps for participants in this case:
  • 1. Identify one or a few cases in the ITEMS book that capture your interest, make notes about how the research was framed and organized. This might serve as a model when you prepare your research prospectus.
  • 2. Identify a European case (from the ITEMS book or one of the other references below) that involves new genetic technologies.
  • 3. Search for a situation in the United States or another country that corresponds to the case in #2 and make whatever contacts and explorations are needed to learn about the situation.
  • 4. Sketch a research proposal, get feedback from participants, revise as if to present to an international panel of researchers.

References and Possible Resources

Atkinson, Paul, Peter Glasner, Margaret Lock (eds) (2009) The Handbook of Genetics and Society Routledge.
Centro de Estudos Sociais (2005) Identifying Trends in European Medical Space: Contribution of European Social and Human Sciences. Coimbra, Portugal: Centro de Estudos Sociais (Pages 30-113, Axis 2, Axis 3, Axis 4, Closing Remarks)
Hackett, Edward, Olga Amsterdamska, et al., Eds. (2008) The Handbook of Science and Technology Studies. Cambridge, MA, MIT Press
Jasanoff, Sheila. (2005) Designs on nature : science and democracy in Europe and the United States Princeton, N.J.: Princeton University Press.
Krimsky, S. and J. Gruber, Eds. (2012). Genetic Explanations: Sense and Nonsense. Cambridge, MA, Harvard University Press.
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.