title: Traditional and electronic informed consent for biobanking: a survey of U.S. biobanks.
abstract: Biobanks face unique challenges obtaining consent from biospecimen contributors. Electronic consent (e-consent) presents one option for streamlining the biobank consent process, and improving contributor understanding of consent information. An e-mail survey was conducted to establish the extent of current biobank e-consent and interest in future use of e-consent. A total of 235 biobanks were surveyed and 65 (28%) responded with a fully completed survey. Few of these 65 biobanks (8%) reported using e-consent; however, the majority (75%) were interested in e-consent. Many (48%) biobanks were in discussions with institutional stakeholders about using e-consent in the future. Anticipated benefits of e-consent included improved efficiency and increased enrollment. Perceived barriers to e-consent adoption included lack of funding, issues with human subjects approval, and factors affecting user uptake (e.g., computer literacy). Biobanks using e-consent reported cost, technology issues, and difficulty training staff as barriers to e-consent adoption. Traditional consenting methods (e.g., face-to-face, phone, and mail) continued to be used at biobanks reporting use of e-consent. The survey results suggest strong interest in e-consent among U.S. biobanks, and a need to consider a range of implementation issues, including user preferences and receptivity; institutional and technical support; integration with clinical data networks; electronic signature capture; and what type of e-consent to implement. Biobanks will need evidence-based guidance for purposes of addressing these issues, so that e-consent processes enhance efficiency, as well as contributor receptivity, understanding, and trust.
authors.affiliation: 1 Program in Bioethics and Humanities, The University of Iowa , Iowa City, Iowa.
authors.forename: Christian M
authors.initials: CM
authors.lastname: Simon
authors.forename: David W
authors.initials: DW
authors.lastname: Klein
authors.forename: Helen A
authors.initials: HA
authors.lastname: Schartz
mesh_terms: D018070:Biological Specimen Banks; D003625:Data Collection; D006801:Humans; D007258:Informed Consent / Q000706:statistics & numerical data*; D014481:United States