Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent

Joel E. Pacyna, Jennifer B. McCormick, Janet E. Olson, Erin M. Winkler, Josh T. Bublitz, Matthew A. Hathcock, Richard R. Sharp

Research output: Contribution to journalArticlepeer-review

Abstract

Dynamic consent has been proposed as a strategy for addressing the limitations of traditional, broad consent for biobank participation. Although the argument for dynamic consent has been made on theoretical grounds, empirical studies evaluating the potential utility of dynamic consent are needed to enhance deliberations about the merits of dynamic consent. Few studies have assessed such considerations as whether donor preferences may change over time or if participants would use a dynamic consent mechanism to modify preferences when they change. We administered a 66-item survey to participants in a large DNA biobank. The survey sought to gauge the stability of donor preferences specified at the time of biobank enrollment, specifically the stability of donors’ preference regarding posthumous availability of biospecimens to next-of-kin. We received 1164 completed surveys for a response rate of 72%. Forty percent of respondents indicated a preference regarding sample availability on the survey (T2) that was inconsistent with the preference they had expressed when they enrolled in the biobank (T1). Most (94%) individuals with inconsistent preferences regarding sample availability had initially restricted sample availability at T1 but were comfortable with broader availability when asked at the time of the survey (T2). Our findings demonstrate that preferences regarding sample use expressed at the time of enrollment in a DNA biobank may not be reliable indicators of donor preferences over time. These findings lend empirical support to the case for a dynamic consent model in which biobank participants are approached over time to clarify their views regarding sample use.

Original languageEnglish (US)
Pages (from-to)1168-1177
Number of pages10
JournalEuropean Journal of Human Genetics
Volume28
Issue number9
DOIs
StatePublished - Sep 1 2020

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

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