title: Attitudes of African-American parents about biobank participation and return of results for themselves and their children.
abstract: BACKGROUND
  Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results.
  
  
  METHODS
  The authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre-engagement and post-engagement surveys.
  
  
  RESULTS
  The authors recruited 45 African-American adults whose children received medical care at two healthcare facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enrol themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre-engagement and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared.
  
  
  CONCLUSIONS
  Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.
authors.affiliation: Department of Anthropology, University of Chicago, Chicago, Illinois, USA.
authors.forename: Colin M E
authors.initials: CM
authors.lastname: Halverson
authors.forename: Lainie Friedman
authors.initials: LF
authors.lastname: Ross
mesh_terms: D000328:Adult; D001741:Black or African American / Q000523:psychology*; D001290:Attitude; D018070:Biological Specimen Banks / Q000458:organization & administration / Q000592:standards*; D035843:Biomedical Research / Q000592:standards*; D002641:Chicago; D002648:Child; D003625:Data Collection / Q000379:methods / Q000592:standards; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent / Q000523:psychology; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods / Q000592:standards