title: Participant characteristics that influence consent for genetic research in a population-based survey: the Baltimore epidemiologic catchment area follow-up.
abstract: BACKGROUND
  The purpose of this study is to investigate the sociodemographic and health characteristics associated with the willingness to donate a DNA sample, and consent to testing and long-term storage of that sample, among participants in a longitudinal community-based survey.
  
  
  METHODS
  Eighty-three percent of the 1,071 participants interviewed in 2004/5 agreed to donate a biological specimen (blood or buccal).
  
  
  RESULTS
  Age was consistently inversely associated with the willingness to allow genetic testing (OR 0.97; p < 0.05), but was unrelated to the willingness to donate or allow storage. There was no association between race and the consent to donate a specimen, but Blacks were less likely to consent to DNA storage for future research as compared with members of other racial groups (OR 0.50; p < 0.01). Four conditions were listed on the consent form as relevant to the genes targeted for assay. Participants with a family history of 1 or more of these conditions were more likely to donate than those without (OR 1.68; p < 0.01). Participants with a personal history of 1 of the 4 conditions listed were not more or less likely to donate, allow testing or allow storage than respondents without such a history.
  
  
  CONCLUSIONS
  Sociodemographic characteristics were unrelated to the willingness to donate a biological sample. Age, but not race, sex or education, was related to consent to genetic testing. Race, but not age, sex or education, was related to consent to storage. A family history of health conditions listed as relevant to the assays being requested was related to the willingness to donate. Factors that affect the willingness to donate a biological sample in an epidemiologic study are not the same as those associated with the willingness to allow genetic testing or storage of that sample for unspecified future research.
authors: Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Md. 21205, USA. bmezuk@jhsph.edu
authors: Briana
authors: B
authors: Mezuk
authors: William W
authors: WW
authors: Eaton
authors: Peter
authors: P
authors: Zandi
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015142:Baltimore; D018070:Biological Specimen Banks; D002391:Catchment Area, Health; D005260:Female; D005500:Follow-Up Studies; D036281:Genetic Research; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D007258:Informed Consent / Q000523:psychology; D008297:Male; D008875:Middle Aged; D017720:Molecular Epidemiology; D012959:Socioeconomic Factors