Anthropology, Genetic Diversity, and Ethics 
A workshop at the Center for Twentieth Century Studies  
University of Wisconsin-Milwaukee  
Session notes written by Trudy Turner. 
Henry Greely
[Participant Information]

Negotiations about research outcomes should be set out in advance of the research taking place.  If these negotiations are not possible it can lead to not doing the research.  Discussions of research outcomes exist at both the group and the individual levels. 

There are four areas of importance: 

  1. Commercial agreements.  The context is important.  Lots of stuff has a very low probability of having anything of commercial value.  Tell the group what the plans are if something of commercial value is found.  The researchers have an obligation to offer to share benefits with the group.  This can take many forms, including payment or royalties.  The group should be consulted on commercial use.  However, there is a problem of over-compromising -- groups might participate only if they expect some commercial value.
  2. Disposition of materials.  Set out in advance how long material will be kept and how it will be used.
  3. Research outcomes.  Return information back to the group.  The people and the scientists both need to learn more about each other.  At the individual level the question is -- should people have the right to learn results.  At the individual level there are three options, 1) Don't tell, 2) Tell if important, and 3) Let the individual choose.
  4. Naming.  How is the group identified in public?  This also should be negotiated ahead of time.  Discussed and understood in advance.
Message: Keep your promises.