Working Group Recommendations on Community Issues

Recommendations to researchers:

• Whenever possible, do not cite ethnic differences in the title of paper.
• Minimize the citation of ethnic differences in the abstract, and do so in the body of the paper in a manner that is scientifically sound and that avoids hyperbole. The following paper was cited as an example of appropriate discussion of ethnic differences:

  Connie M. Drysdale, Dennis W. McGraw, Catharine B. Stack, J. Claiborne Stephens, Richard S. Judson, Krishnan Nandabalan, Kevin Arnold, Gualberto Ruano, and Stephen B. Liggett. Complex promoter and coding region 2-adrenergic receptor haplotypes alter receptor expression and predict in vivo responsiveness. Proc. Natl. Acad. Sci. USA, Vol. 97, 10483-10488, September 12, 2000.

• In reporting data, make it very clear to which community the results and conclusions are applicable. For example, if a study examined one small sample of a minority group in one location, it should be emphasized that those results may not represent the entire group nationwide, and that further work is needed to investigate the applicability of the findings to the overall minority group.
• Community consultation and community advisory boards should be associated with DNA repositories.
• Community consultation must be separated from recruitment into research studies. The same forum or meeting should not be used to simultaneously consult with the community and to recruit into specific studies.

In addition, there were several suggestions for work in this area:

• Suggested criteria for community consultation:
  • The research targets members of a community by virtue of their membership in that particular group
  • The research selectively impacts members of a community
  • Communities that have an organized form of government or representation
  • Communities that have a history of oppression (and non-inclusion)
• Types of studies:
  • those designed to ask questions about the community
  • stratified sample design - purpose of the study is to look at group differences
  • including representative samples - then in a post hoc manner, factors such as ethnicity will be statistically considered (maybe in this case community consultation is not required prospectively, but consultation following the study may be appropriate if highly provocative results are obtained, in order to educate and prepare the community)
• It is necessary to refine the definitions of ethnic or community groups.
• Multiple, small meetings in different community sites may be more effective than few, large, highly engineered meetings that are biased in terms of location and organizational structure.
• Some of this effort might be coordinated at the institutional level to avoid duplication of effort, particularly for situations that such as genetics in specific communities, HIV research, etc.
• Flexible systems should be developed in conjunction with IRBs. Possibly IRBs could be informed of a planned community consultation process, which will result in a protocol for eventual review and submission to that IRB for approval. Relationships between the community and the IRB should develop.
• Investigators should budget for community consultation, which should be added to the cost of grant applications.

Working Group Members:

• Julio Licinio, UCLA (Chair)
• Anna Di Rienzo, U. Chicago
• Charmaine Royal^*, Howard U
• Charles Weijer, Dalhousie U.
• Pilar Ossorio, U. Wisconsin
• Jeff Long, NIAAA, NIH
• Mark Rothstein, U. KY
• Carmen Navarro^*, UCLA
• Rochelle Long (PGRN and KB Liaison)

Note: ^* indicates member was absent.