title: Potential bias in the bank: what distinguishes refusers, nonresponders and participants in a clinic-based biobank?
abstract: BACKGROUND
  Biobanks are an important resource for genetic and epidemiologic research, but bias may be introduced if those who accept the recruitment invitation differ systematically from those who do not in terms of attributes important to health-related investigations. To understand potential bias in a clinic-based biobank of biological samples, including genetic data linked to electronic health record information, we compared patient characteristics and self-reported information among participants, nonresponders and refusers. We also compared reasons for nonparticipation between refusers and nonresponders to elucidate potential pathways to reduce nonparticipation and any uncovered bias.
  
  
  METHODS
  We mailed recruitment packets to 1,600 adult patients with upcoming appointments at Mayo Clinic (Rochester, Minn., USA) and recorded their participation status. Administrative data were used to compare characteristics across groups. We used phone interviews with 26 nonresponders and 26 refusers to collect self-reported information, including reasons for nonparticipation. Participants were asked to complete a mailed questionnaire.
  
  
  RESULTS
  We achieved 26.2% participation (n=419) with 12.1% refusing (n=193) and 61.8% nonresponse (n=988). In multivariate analyses, sex, age, region of residence, and race/ethnicity were significantly associated with participation. The groups differed in information-seeking behaviors and research experience. Refusers more often cited privacy concerns, while nonresponders more often identified time constraints as the reason for nonparticipation.
  
  
  CONCLUSIONS
  For genomic medicine to advance, large, representative biobanks are required. Significant associations between patient characteristics and nonresponse, as well as systematic differences between refusers and nonresponders, could introduce bias. Oversampling or recruitment changes, including heightened attention to privacy protection and participation burden, may be necessary to increase participation among less-represented groups.
authors.affiliation: Division of Health Care Policy and Research, Mayo Clinic, Rochester, MN 55905, USA. ridgeway.jennifer@mayo.edu
authors.forename: J L
authors.initials: JL
authors.lastname: Ridgeway
authors.forename: L C
authors.initials: LC
authors.lastname: Han
authors.forename: J E
authors.initials: JE
authors.lastname: Olson
authors.forename: K A
authors.initials: KA
authors.lastname: Lackore
authors.forename: B A
authors.initials: BA
authors.lastname: Koenig
authors.forename: T J
authors.initials: TJ
authors.lastname: Beebe
authors.forename: J Y
authors.initials: JY
authors.lastname: Ziegenfuss
mesh_terms: D000328:Adult; D000368:Aged; D000554:Ambulatory Care Facilities; D018070:Biological Specimen Banks; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D008910:Minnesota; D010358:Patient Participation; D055815:Young Adult