[Sci-tech-public] Fwd: Workshop on "How complexities of the social environment shape the ways that society makes use of knowledge about 'genetic' conditions"

[Debbie Meinbresse]

Apologies if you have already received this notice from another source.


>Date: Fri, 18 Mar 2005 11:49:56 -0500
>To: events-hs at fas.harvard.edu, all-hs at fas.harvard.edu
>From: Liza Zwiebach <lzwiebac at fas.harvard.edu>
>Subject: [events-hs] Fwd: Workshop on "How complexities of the social
>  environment
>  shape the ways that society makes use of knowledge about 'genetic'
>  conditions"
>>
>>Dear colleagues,
>>
>>Some spaces have opened up in this workshop if you are interested or can 
>>think of people I could invite -- suggestions welcome.
>>
>>Yours,
>>Peter Taylor
>>Director, Program in Science, Technology, and Values
>>Univ. of Massachusetts, Boston
>>--------
>>
>>"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
>>
>>Preamble to the workshop topic:
>>Even in a case where a condition has a clear-cut link to a single changed 
>>gene [see below], 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 history, philosophy, sociology, and politics of 
>>biology.  Such discussion might well be informed by historical cases, 
>>especially in agriculture where 'genetic' knowledge has a long history.
>>
>>Consider the case of phenylketonuria (PKU).  Many teachers about biology 
>>in its social context invoke the case of 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.
>
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Debbie Meinbresse
STS Program, MIT
617-253-4062 
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