Managing the unimaginable: Biobank participant views on reconsent for whole genome sequencing of stored biospecimens

Erica J. Sutton, Joel E. Pacyna, Matthew Hathcock, Jennifer McCormick, Katherine Nowakowski, Janet E. Olson, Richard R. Sharp

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Background: DNA biobanks frequently obtain broad permissions from sample donors, who agree to allow their biospecimens to be used for a variety of future purposes. A limitation of this approach is that it may not be possible to discuss or anticipate all potential uses of biospecimens at the time patient consent is obtained. We surveyed biobank participants to clarify their views regarding the need to be informed about research involving whole genome sequencing (WGS). Methods: We invited 1200 participants in the Mayo Clinic Biobank to complete a survey inquiring about their support for WGS; their interest in being recontacted before WGS of their biospecimens; whether they would consent to WGS if asked; and the acceptability of proceeding with WGS if sample donors could not be reached. Results: Six hundred eighty-seven biobank participants returned completed surveys (57% response). More than 96% of biobank participants were supportive of WGS and would give permission for WGS of their sample, if asked. Nonetheless, 61% of biobank participants felt they should be recontacted before WGS was done. Participants were divided regarding the permissibility of conducting WGS if efforts to recontact sample donors were unsuccessful. Discussion: Our findings highlight a potential discrepancy between the broad permissions granted by biobank participants at the time they donated biospecimens and their views about the application of WGS to their samples. Biobank participants appear to value the ability to confirm their commitment to genetic research when the studies in question involve WGS, a technological capacity they may not have anticipated at the time they donated their biospecimens. Efforts to reevaluate biobank participants' views about the acceptability of new technologies may help to ensure alignment of participants' current beliefs and research applications that would have been difficult to anticipate at the time biospecimens were collected.

Original languageEnglish (US)
Pages (from-to)296-302
Number of pages7
JournalBiopreservation and Biobanking
Volume17
Issue number4
DOIs
StatePublished - Aug 1 2019

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Genes
Genome
Tissue Donors
Duty to Recontact
Genetic Research
Aptitude
Research
Technology
DNA

All Science Journal Classification (ASJC) codes

  • Medicine (miscellaneous)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Cell Biology

Cite this

Sutton, Erica J. ; Pacyna, Joel E. ; Hathcock, Matthew ; McCormick, Jennifer ; Nowakowski, Katherine ; Olson, Janet E. ; Sharp, Richard R. / Managing the unimaginable : Biobank participant views on reconsent for whole genome sequencing of stored biospecimens. In: Biopreservation and Biobanking. 2019 ; Vol. 17, No. 4. pp. 296-302.
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title = "Managing the unimaginable: Biobank participant views on reconsent for whole genome sequencing of stored biospecimens",
abstract = "Background: DNA biobanks frequently obtain broad permissions from sample donors, who agree to allow their biospecimens to be used for a variety of future purposes. A limitation of this approach is that it may not be possible to discuss or anticipate all potential uses of biospecimens at the time patient consent is obtained. We surveyed biobank participants to clarify their views regarding the need to be informed about research involving whole genome sequencing (WGS). Methods: We invited 1200 participants in the Mayo Clinic Biobank to complete a survey inquiring about their support for WGS; their interest in being recontacted before WGS of their biospecimens; whether they would consent to WGS if asked; and the acceptability of proceeding with WGS if sample donors could not be reached. Results: Six hundred eighty-seven biobank participants returned completed surveys (57{\%} response). More than 96{\%} of biobank participants were supportive of WGS and would give permission for WGS of their sample, if asked. Nonetheless, 61{\%} of biobank participants felt they should be recontacted before WGS was done. Participants were divided regarding the permissibility of conducting WGS if efforts to recontact sample donors were unsuccessful. Discussion: Our findings highlight a potential discrepancy between the broad permissions granted by biobank participants at the time they donated biospecimens and their views about the application of WGS to their samples. Biobank participants appear to value the ability to confirm their commitment to genetic research when the studies in question involve WGS, a technological capacity they may not have anticipated at the time they donated their biospecimens. Efforts to reevaluate biobank participants' views about the acceptability of new technologies may help to ensure alignment of participants' current beliefs and research applications that would have been difficult to anticipate at the time biospecimens were collected.",
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Managing the unimaginable : Biobank participant views on reconsent for whole genome sequencing of stored biospecimens. / Sutton, Erica J.; Pacyna, Joel E.; Hathcock, Matthew; McCormick, Jennifer; Nowakowski, Katherine; Olson, Janet E.; Sharp, Richard R.

In: Biopreservation and Biobanking, Vol. 17, No. 4, 01.08.2019, p. 296-302.

Research output: Contribution to journalArticle

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T2 - Biobank participant views on reconsent for whole genome sequencing of stored biospecimens

AU - Sutton, Erica J.

AU - Pacyna, Joel E.

AU - Hathcock, Matthew

AU - McCormick, Jennifer

AU - Nowakowski, Katherine

AU - Olson, Janet E.

AU - Sharp, Richard R.

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N2 - Background: DNA biobanks frequently obtain broad permissions from sample donors, who agree to allow their biospecimens to be used for a variety of future purposes. A limitation of this approach is that it may not be possible to discuss or anticipate all potential uses of biospecimens at the time patient consent is obtained. We surveyed biobank participants to clarify their views regarding the need to be informed about research involving whole genome sequencing (WGS). Methods: We invited 1200 participants in the Mayo Clinic Biobank to complete a survey inquiring about their support for WGS; their interest in being recontacted before WGS of their biospecimens; whether they would consent to WGS if asked; and the acceptability of proceeding with WGS if sample donors could not be reached. Results: Six hundred eighty-seven biobank participants returned completed surveys (57% response). More than 96% of biobank participants were supportive of WGS and would give permission for WGS of their sample, if asked. Nonetheless, 61% of biobank participants felt they should be recontacted before WGS was done. Participants were divided regarding the permissibility of conducting WGS if efforts to recontact sample donors were unsuccessful. Discussion: Our findings highlight a potential discrepancy between the broad permissions granted by biobank participants at the time they donated biospecimens and their views about the application of WGS to their samples. Biobank participants appear to value the ability to confirm their commitment to genetic research when the studies in question involve WGS, a technological capacity they may not have anticipated at the time they donated their biospecimens. Efforts to reevaluate biobank participants' views about the acceptability of new technologies may help to ensure alignment of participants' current beliefs and research applications that would have been difficult to anticipate at the time biospecimens were collected.

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