Genetic Technologies and Racial Justice

Genetic Technologies and Racial Justice

TOPICS

  • DNA forensics
  • DNA ancestry tests
  • Race-based medicine
  • Race-based databases

 

WHAT WE’D DONE AT PREVIOUS TARRYTOWN MEETINGS

Participants in this track have made many important contributions that show how population genetic research and related policy – along with the biotech products, applications and marketing – perpetuate discredited notions of race as a biological category. Previous working sessions at Tarrytown 2010 and 2011 carried the field forward and generated important discussion. At the third Tarrytown Meeting, we began with the assumption that we want to shift the conversation toward what can be done to challenge genetic misunderstandings of race and promote better research.

 

I. WORKING SESSION 1: BUILDING A WORKING GROUP - Monday afternoon

One of the biggest challenges before us is the lack of opportunities for useful and long-term engagement with scientists. We need to strengthen our collaboration with those who want to promote the responsible use of race in scientific research, and work towards better listening on both sides.

One proposal, developed at the 2010 Tarrytown Meeting, calls for the establishment of an interdisciplinary working group that could meet for a longer period to consider:

  • how/why racial categories and continental groupings are currently used in genetic and biomedical research (including mandates by funding agencies), varying with national contexts
  • the impact of their use, and
  • how we might develop new and innovative ways to approach these research questions, so that we can move towards more nuanced and accurate categories and thereby achieve better social and health outcomes. 

At the 2012 Tarrytown Meeting, this session worked to generate a proposal for an ongoing working group on race and genetics. We considered questions including: What would an infrastructure look like in order to allow for effective collaboration, across different disciplines, backgrounds, etc.? How can we better communicate our concerns about the use of race as a proxy to people who are not yet aware of its consequences (or those who have considered the concerns, and are disregarding them)? What parts of our work could be strengthened by the background and expertise of scientists, and how might we use this to encourage participation? How might an ongoing working group generate recommendations for regulatory agencies to prevent the careless uses of race we see circulating in our institutions today?

This session began with a brief discussion on the need for such a working group, focusing on developing a funding proposal that can articulate what it might look like, and the pitfalls to anticipate, as seen from past efforts. Then, we will have a moderated discussion with the aim of generating a proposal.

 

II. WORKING SESSION 2: COMMUNITY ADVOCACY AND COMMUNITY PARTICIPATION - Tuesday afternoon

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 focused 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 to be explored include:

  • 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, e.g. 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?

 

III. WORKING SESSION 3: Wednesday morning

We used this third, one-hour session to continue the development of a proposal for a “genetic technologies and racial justice” working group.  Our goals were to leave with an outline of a draft (at a minimum), as well as specific goals and a timeline for the ongoing work to be completed after the Tarrytown Meetings. We also used this time to prepare final comments for the closing plenary by asking the question: “Where have we been, where are we now, and where are we going?”