Notes towards a research proposal for international collaboration comparing policy and practices around new genetic technologies
(developed as part of Collaborative Exploration
Steps in development
1. How do people, past and present, see their agency
(or lack thereof) in relation to genetic information
1a. How is this reflected in and reinforced by visual images
2. How do people not
see their agency in relation to "social experiments"
with possible health consequences, e.g., antibiotic-fed livestock?
3. Review of information visualization
field => No representations of agents embedded in intersecting processes
, Int. Processes
) (in contrast:
4. Exploration of how complexity gets reduced as a result of setbacks in legal and policy arena
- Sellers, C. (1999). "Body, Place and the State: The Makings of an "Environmentalist" Imaginary in the Post-World War II U.S." Radical History Review 74: 31-64. (downloadable from http://bit.ly/1gFJP5l)
- Describes how two law suits around DDT use on Long Island proved very influential.
5. Method of Witness seminars
in social history
- "key members and representatives of different parts of a community to share their memories, recognize and discuss any conflicting recollections, and arrive at a better understanding if not a reconciliation of differences in what they remember."
6. Research proposal
: Witness seminars in which people explore their sense of agency in relation to genetic information and to "social experiments" with possible health consequences
- People drawn from some place with some possibility of continuing to work together after the seminar is over
- People drawn from diverse positions, e.g., parents of DS child, women with positive BRCA gene test, parents who aborted a fetus after prenatal diagnosis, metastatic breast cancer alliance or from Silent Spring Institute, PKU teenagers, social/environmental epidemiologists...
- Discussion primed by straightforward info sheets that convey the multiple voices, drawing, for example, on "what can be reasonably promised regarding genes and the development of a trait in an individual"
- Follow-up historical scan to move witnesses into an Intersecting Processes perspective
6a. No assumption that it is human nature to be concerned when you are affected as individual right now, and not look into changing the preconditions for others
7. Analysis of observations
from witness seminar (TBA)
8. Extensions: Social theorizing