title: Understanding participation by African Americans in cancer genetics research.
abstract: OBJECTIVE
  Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research.
  
  
  METHODS
  We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research.
  
  
  RESULTS
  Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making.
  
  
  CONCLUSIONS
  African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.
authors.affiliation: Center for Community-Based Research and Health. Disparities, Department of Psychiatry, University of Pennsylvania, Philadelphia, USA.
authors.forename: Jasmine A
authors.initials: JA
authors.lastname: McDonald
authors.forename: Frances K
authors.initials: FK
authors.lastname: Barg
authors.forename: Benita
authors.initials: B
authors.lastname: Weathers
authors.forename: Carmen E
authors.initials: CE
authors.lastname: Guerra
authors.forename: Andrea B
authors.initials: AB
authors.lastname: Troxel
authors.forename: Susan
authors.initials: S
authors.lastname: Domchek
authors.forename: Deborah
authors.initials: D
authors.lastname: Bowen
authors.forename: Judy A
authors.initials: JA
authors.lastname: Shea
authors.forename: Chanita Hughes
authors.initials: CH
authors.lastname: Halbert
mesh_terms: D000328:Adult; D001741:Black or African American; D001290:Attitude; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000208:ethnology* / Q000235:genetics*; D010358:Patient Participation; D036301:Qualitative Research