title: Communicating with biobank participants: preferences for receiving and providing updates to researchers.
abstract: BACKGROUND
  Research biobanks collect biologic samples and health information. Previous work shows that biobank participants desire general study updates, but preferences about the method or frequency of these communications have not been explored. Thus, we surveyed participants in a long-standing research biobank.
  
  
  METHODS
  Eligible participants were drawn from a study of patients with personal/family history suggestive of Cowden syndrome, a poorly recognized inherited cancer syndrome. Participants gave blood samples and access to medical records and received individual results but had no other study interactions. The biobank had 3,618 participants at sampling. Survey eligibility included age ≥18 years, enrollment within the biobank's first 5 years, normal PTEN analysis, and contiguous U.S. address. Multivariate logistic regression analyses identified predictors of participant interest in Internet-based versus offline methods and methods allowing participant-researcher interaction versus one-way communication. Independent variables were narrowed by independent Pearson correlations by cutoff P < 0.2, with P < 0.02 considered significant.
  
  
  RESULTS
  Surveys were returned from 840 of 1,267 (66%) eligible subjects. Most (97%) wanted study updates, with 92% wanting updates at least once a year. Participants preferred paper (66%) or emailed (62%) newsletter methods, with 95% selecting one of these. Older, less-educated, and lower-income respondents strongly preferred offline approaches (P < 0.001). Most (93%) had no concerns about receiving updates and 97% were willing to provide health updates to researchers.
  
  
  CONCLUSIONS
  Most participants were comfortable receiving and providing updated information. Demographic factors predicted communication preferences.
  
  
  CONCLUSIONS
  Researchers should make plans for ongoing communication early in study development and funders should support the necessary infrastructure for these efforts.
authors.affiliation: Genomic Medicine Institute, Cleveland Clinic, Cleveland, Ohio. Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio. Taussig Cancer Institute, Cleveland Clinic, Cleveland, Ohio.
authors.forename: Jessica L
authors.initials: JL
authors.lastname: Mester
authors.affiliation: Department of Bioethics, Cleveland Clinic, Cleveland, Ohio.
authors.forename: MaryBeth
authors.initials: M
authors.lastname: Mercer
authors.affiliation: Department of Bioethics, Case Western Reserve University, Cleveland, Ohio. Center for Genetic Research Ethics and Law, Case Western Reserve University, Cleveland, Ohio.
authors.forename: Aaron
authors.initials: A
authors.lastname: Goldenberg
authors.affiliation: Genomic Medicine Institute, Cleveland Clinic, Cleveland, Ohio. Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio. Department of Genetics and Genome Sciences, Case Western Reserve University, Cleveland, Ohio.
authors.forename: Rebekah A
authors.initials: RA
authors.lastname: Moore
authors.affiliation: Genomic Medicine Institute, Cleveland Clinic, Cleveland, Ohio. Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio. Taussig Cancer Institute, Cleveland Clinic, Cleveland, Ohio. Department of Genetics and Genome Sciences, Case Western Reserve University, Cleveland, Ohio. Center for Clinical Investigation, Case Western Reserve University, Cleveland, Ohio. Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, Ohio.
authors.forename: Charis
authors.initials: C
authors.lastname: Eng
authors.affiliation: Genomic Medicine Institute, Cleveland Clinic, Cleveland, Ohio. Department of Bioethics, Cleveland Clinic, Cleveland, Ohio. Department of Bioethics, Case Western Reserve University, Cleveland, Ohio. Center for Clinical Investigation, Case Western Reserve University, Cleveland, Ohio. Biomedical Ethics Program, Mayo Clinic, Rochester, Minnesota. sharp.richard@mayo.edu.
authors.forename: Richard R
authors.initials: RR
authors.lastname: Sharp
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018070:Biological Specimen Banks; D035843:Biomedical Research / Q000706:statistics & numerical data; D003142:Communication; D005260:Female; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D012107:Research Design; D011795:Surveys and Questionnaires; D055815:Young Adult