Constructing scientific citizenship Challenges for research practice

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Constructing scientific citizenship
Challenges for research practice

• Anne Scott Rosemary Du Plessis
• Technologies, Publics and Power Conference
• Akaroa, February 2004

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Active citizenship is a pervasive discourse in
many contemporary societies, providing the
framework for many discussions about genetic
technologies and their purported benefits, as
well as the rationale for diverse programmes and
practices.

• Alan Petersen and Robin Bunton, The New Genetics
  and Peoples Health, 2002 204

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Constructive Conversations in brief...

• Funded by FRST - Impacts of new technologies
  RFP
• started April 03
• Examines the social, cultural, ethnical
  implications of three emerging health
  biotechnologies
• Initial focus on genetic testing
• Three objectives
• Methodological innovation ? strategies for public
  dialogue
• Knowledge production ? divergent orientations re
  impacts
• Ethical framework analysis ? diverse frameworks
  and policy and regulatory processes
• Group processes derived from tikanga Maori

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Key Questions

• Which practices will facilitate active scientific
  citizenship?
• How to generate community-based discussion about
  technologies like genetic testing? (especially
  when these are not day-to-day concerns)
• How can knowledge generated through such
  discussions inform decision-making about these
  technologies?

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Key principles

• A focus on
• situated knowledges contextual and often
  storied understandings grounded in peoples
  life-worlds
• participation and power enabling strategies
  for public discussion/interaction/decision-making
• dialogue - exchange of ideas and positions that
  challenge expert/non expert divisions

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Challenges of achieving scientific citizenship?

• How to engage members of the public?
• Issues re power, knowledge, time, perceived
  relevance
• How to avoid reconstitution of the deficit
  model?
• Framing of the issues impacts on responses

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A two-year process...

• Recruitment of contact groups
• Contact group processes
• Interviews with key actors
• Feedback sessions with contact groups
• Day-long, dialogic, workshops
• Evaluation

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A first attempt...

• Narrative approach
• Disorder focused
• Huntingtons disease, breast cancer, diabetes...
• Consumer/ individual orientation
• Would you have this test?
• How might this affect you, your family, etc...

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Rather than seeing themselves only as consumers
or potential recipients of new health
technologies, participants need to be presented
with an opportunity to see themselves as citizens
with a collective responsibility for ensuring
that new technologies are developed in a way
which meets collective needs, and has beneficial
social outcomes.

• CC discussion paper, June 2003

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Thematic focus direct-to-consumer marketing of
genetic testing
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... and then back to narrative!

• There is no way to rationality to actually
  existing worlds outside stories, not for our
  species anyway.
• Donna Haraway, Modest Witness 1997 44

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Simplified materials but a more layered process
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gene banking reworked...
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• Having thought about it, I dont think I should
  participate. Im not a scientist I dont know
  much about genetic testing. (comment by
  potential contact group participant)
• Many thanks for the opportunity to partake in
  Constructive Conversations. It was just so good.
  I have only spoken to a couple of people in the
  group since last week and they were blown away
  with the way the conversation flowed and what was
  said. (Email from non-scientist contact
  group participant)

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Cooking up science/society dialogue

• Learning the limits of a recipe is part of what
  is involved in learning to cook. Its a
  self-reflective process, because in order for me
  to determine the spirit in which I should
  receive a set of instructions, I must know what
  kind of operator I am how I tend to work with
  ingredients and so on.
• Lisa Heldke, Recipes for Theory Making,
• Hypatia, vol. 3, no. 2, 1988 25

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References

• Haraway, Donna (1997) Modest Witness. New York
  Routledge.
• Heldke, Lisa (1988) Recipes for Theory Making,
  Hypatia, vol. 3, no. 2, 1988, pp. 15-29.
• Irwin, Alan (2001) Constructing the Scientific
  Citizen, Public Understanding of Science, 10
  1-18.
• Petersen, Alan and Bunton, Robin (2002) The New
  Genetics and Peoples Health, Routledge London
  New York.