Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent
| Autor: | Richard R. Sharp, Matthew A. Hathcock, Janet E. Olson, Josh T. Bublitz, Erin M. Winkler, Jennifer B. McCormick, Joel E. Pacyna |
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| Rok vydání: | 2020 |
| Předmět: |
Adult
Male Value (ethics) Change over time medicine.medical_specialty Stability (learning theory) Sample (statistics) Article 03 medical and health sciences Empirical research Human behaviour Genetics medicine Humans Genetics (clinical) Aged Biological Specimen Banks Ethics Aged 80 and over Response rate (survey) 0303 health sciences Informed Consent 030305 genetics & heredity Patient Preference Middle Aged Biobank Tissue Donors Preference Family medicine Female Psychology |
| Zdroj: | European Journal of Human Genetics |
| ISSN: | 1476-5438 1018-4813 |
| DOI: | 10.1038/s41431-020-0625-9 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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