title: Testing an online, dynamic consent portal for large population biobank research.
abstract: BACKGROUND
  Michigan's BioTrust for Health, a public health research biobank comprised of residual dried bloodspot (DBS) cards from newborn screening contains over 4 million samples collected without written consent. Participant-centric initiatives are IT tools that hold great promise to address the consent challenges in biobank research.
  
  
  METHODS
  Working with Private Access Inc., a pioneer in patient-centric web solutions, we created and pilot tested a dynamic informed consent simulation, paired with an educational website, focusing on consent for research utilizing DBSs in Michigan's BioTrust for Health.
  
  
  RESULTS
  Out of 187 pilot testers recruited in 2 groups, 137 completed the consent simulation and exit survey. Over 50% indicated their willingness to set up an account if the simulation went live and to recommend it to others. Participants raised concerns about the process of identity verification and appeared to have little experience with sharing health information online.
  
  
  CONCLUSIONS
  Applying online, dynamic approaches to address the consent challenges raised by biobanks with legacy sample collections should be explored, given the positive reaction to our pilot test and the strong preference for active consent. Balancing security and privacy with accessibility and ease of use will continue to be a challenge.
authors.affiliation: Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, Mich., USA.
authors.forename: Daniel B
authors.initials: DB
authors.lastname: Thiel
authors.forename: Jodyn
authors.initials: J
authors.lastname: Platt
authors.forename: Tevah
authors.initials: T
authors.lastname: Platt
authors.forename: Susan B
authors.initials: SB
authors.lastname: King
authors.forename: Nicole
authors.initials: N
authors.lastname: Fisher
authors.forename: Robert
authors.initials: R
authors.lastname: Shelton
authors.forename: Sharon L R
authors.initials: SL
authors.lastname: Kardia
mesh_terms: D022126:Access to Information / Q000941:ethics*; D000328:Adult; D018070:Biological Specimen Banks / Q000941:ethics / Q000458:organization & administration; D035843:Biomedical Research / Q000941:ethics / Q000458:organization & administration; D003198:Computer Simulation; D003219:Confidentiality / Q000941:ethics*; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D033181:Information Dissemination; D007258:Informed Consent; D008297:Male; D008824:Michigan; D008875:Middle Aged; D015997:Neonatal Screening; D010865:Pilot Projects; D013048:Specimen Handling