Anthropology, Genetic Diversity, and Ethics  
A workshop at the Center for Twentieth Century Studies   
University of Wisconsin-Milwaukee   
Session Four:
Discussion Group Reports

Transparency Notes: 

1. coercion 
2. outcomes may be unforeseen, inherent in research 
3. process is important 
4. attempt to contact groups that would be impacted (parent community), present 
expatriates that 
5. parent communities disapprove, may be possible 

1. previously covered 

  • respect
  • reciprocity
  • flexibility
  • options for researcher or group to decline participation
  • problemization, who frames important questions
  • Disney World
  • Disseminate information to a broader audience of scientists/community advocates
  • outcome/evidence-based research, review (retrospective) or IRB experiences

Successful Collaboration: 

  • Continuous process
  • (Strive for) equality in power
  • Dissemination of full information between equal partners
  • Willingness to assimilate information on all sides
  • Respect

  1. Equal partnership should be a major goal, including involvement of local experts (knowledgeable people).
  2. Projects should write into their grants, funds for an anthropologist to live in the community to observe daily life and comments.
  3. Benefits should be clearly defined as to immediate vs. long-term outomes, and direct vs. indirect.

  • must engage the population in a process
  • reciprocity built into the research proposal; be explicit
  • group membership is not always optimal: many layers
  • sustained contact over time between the researcher and the population

Collaboration vs. Cooperation 

1. Developing trust within the community 

  • work with local M.D.s, scientists
  • will community benefit from research?
  • immediate concrete beliefs (identified by community, collaboration with scientists, collaboration between scientists and community members)
  • cross-disciplinary exposure/insights
  • explain benefits/goals in clear, understandable terms, engage community, hold community meetings.
2.  Volunteer marrow donors 

  1. Important to distinguish mutual collaboration (same interests) vs. fair transactions (differ interests), both can be acceptable, but second risks forced choices
  2. Impact of population history studies greater where group accepts authority of science -- i.e., in real collaborative situations.
  3. Need to distinguish different collaborations, US and local scientists vs. US plus local scientists and local help (leaders, facilitators, informants, etc.) different issues