Community Participation
Tuesday 24 July 2012, 2:00pm - 4:00pm

This track also considered how to strengthen community advocacy and participation with communities of color, indigenous groups, and racial justice leaders. We began discussing the success and challenges some Tarrytown Meetings participants have had with community participation and organization and leadership outreach, and then focus the conversation on strategies for moving forward, in particular, for the translation and messaging of the social implications of some genetic technologies and practices. Key questions that were explored included:

  • How do we shift the conversation past demands for access and inclusion and towards a critical understanding of the racial justice implications created by these technologies?
  • What is the aim of community collaboration and advocacy? Is it the provision of information? Or for two-way learning?
  • How do we avoid tokenism in participatory activities?
  • How might community advocacy and/or participation help us overcome the “knowledge gap”?
  • What tools and infrastructure allow us to promote collaborative activities—leaflets, information about ongoing research/activities of interest? How do we adjust these based on participatory outcomes? How should our strategies for collaboration vary according to what technology or practice is at hand (i.e. Race-based medicine, DNA forensics, etc.)?
  • How must we adjust our strategies depending on the communities being targeted, e.g. indigenous vs African American communities?
  • How might we create new structures for community participation in regulatory processes, eg through “Race Impact Assessments”?
  • How can we collect and dissipate narrative experiences of community members who have been affected by one or more of these technologies?

Click here to see a full description of the Genetic Technologies and Racial Justice track.

Hartley Room