How complexities of the social environment shape the ways that society makes use of knowledge about 'genetic' conditions

"How complexities of the social environment shape the ways that society makes use of knowledge about 'genetic' conditions"

Spring 2005 New England Workshop on Science and Social Change, an innovative, interaction-intensive workshop designed to facilitate discussion and longer-term collaboration among college faculty who teach and write about interactions between scientific developments and social change.

See http://www.stv.umb.edu/newssc05.html for background on NewSSC premises and objectives.

Location: Marine Biological Laboratory (MBL), Woods Hole MA, USA
April 21, 9am - April 24, 3pm

Organizer: Peter J. Taylor, University of Massachusetts Boston, Programs in Science, Technology and Values.

See http://www.stv.umb.edu/newsscarrange.html for Costs and Arrangements, including Application Process (deadline 1/15/05)

Preamble to the workshop topic:

Many teachers about biology in its social context invoke the case of phenylketonuria (PKU) to demonstrate that "genetic" does not mean unchangeable. Until the 1960s people with the PKU gene always suffered severe mental retardation. But now the brain damage can be averted through detection of newborns with high levels of the amino acid phenylalanine followed by a special phenylalanine-free diet. Yet, as Diane Paul's (1997) history of PKU screening shows, the certainty of severe retardation has been replaced by a chronic disease with a new set of problems. Although screening of newborns became routine quite rapidly, there remains an ongoing struggle to secure health insurance coverage for the special diet and to enlist family and peers to support PKU individuals staying on that diet. For women who do not maintain the diet well and become pregnant, high levels of phenylalanine adversely affect the development of their non-PKU fetuses. A more complex picture of development in a social environment is needed for anyone to make use of the knowledge that the fate of individuals with the PKU gene is not determined at birth. Moreover, if scholars in Science & Technology Studies and others want to contribute to improving the lives of people affected by PKU, we need to consider where we are prepared to get involved-around insurance policy, ethnic diversity in diet, support groups for PKU individuals, measures to promote dietary compliance in teenagers and fertile women, services for babies affected by their PKU mothers, and so on.

Even in a case (PKU) where the condition has a clear-cut link to a single changed gene, the socially conditioned pathways of change in behavioral or medical conditions over individuals' lifetimes-their biosocial development-have to be taken into account to know the various things different people can do. Bringing more attention to such implications of genomics and related developments in genetics is an important area for science and technology studies.