Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Phoebe B. Mitchell; Sonja I. Ziniel; Sarah K. Savage; Kurt D. Christensen; Elissa R. Weitzman; Robert C. Green; Noelle L. Huntington; Debra J. Mathews; Ingrid A. Holm

doi:10.1177/1556264617753483

Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Phoebe B. Mitchell, Sonja I. Ziniel, Sarah K. Savage, Kurt D. Christensen, Elissa R. Weitzman, Robert C. Green, Noelle L. Huntington, Debra J. Mathews, Ingrid A. Holm

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3 Scopus citations

Abstract

The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and intent to participate (ITP) in biobank research utilizing their child’s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p <.0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

Original language	English (US)
Pages (from-to)	125-138
Number of pages	14
Journal	Journal of Empirical Research on Human Research Ethics
Volume	13
Issue number	2
DOIs	https://doi.org/10.1177/1556264617753483
State	Published - Apr 1 2018

Keywords

bioethics
biorepositories/biobanks
children and adolescent/pediatrics
genetic research
return of results

ASJC Scopus subject areas

Social Psychology
Education
Communication

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10.1177/1556264617753483

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title = "Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?",

abstract = "The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents{\textquoteright} preferences and intent to participate (ITP) in biobank research utilizing their child{\textquoteright}s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p <.0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.",

keywords = "bioethics, biorepositories/biobanks, children and adolescent/pediatrics, genetic research, return of results",

author = "Mitchell, {Phoebe B.} and Ziniel, {Sonja I.} and Savage, {Sarah K.} and Christensen, {Kurt D.} and Weitzman, {Elissa R.} and Green, {Robert C.} and Huntington, {Noelle L.} and Mathews, {Debra J.} and Holm, {Ingrid A.}",

note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by NIH grants HG006615, HG006500, HD077671, HG006828, and HG006993. Publisher Copyright: {\textcopyright} 2018, {\textcopyright} The Author(s) 2018.",

year = "2018",

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AU - Ziniel, Sonja I.

AU - Savage, Sarah K.

AU - Christensen, Kurt D.

AU - Weitzman, Elissa R.

AU - Green, Robert C.

AU - Huntington, Noelle L.

AU - Mathews, Debra J.

AU - Holm, Ingrid A.

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by NIH grants HG006615, HG006500, HD077671, HG006828, and HG006993. Publisher Copyright: © 2018, © The Author(s) 2018.

PY - 2018/4/1

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N2 - The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and intent to participate (ITP) in biobank research utilizing their child’s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p <.0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

AB - The opportunity to receive individual research results (IRRs) in accordance with personal preferences may incentivize biobank participation and maximize perceived benefit. This trial investigated the relationship between parents’ preferences and intent to participate (ITP) in biobank research utilizing their child’s genetic information. We randomized parents of pediatric patients to four hypothetical biobanks, one of which employed a preference-setting model for return of results regarding their child. ITP was highest among those desiring all types of IRRs (93.3%) and decreased as participants became increasingly selective with their preferences (p <.0001). We demonstrated that most parents would participate in a biobank that allows for preference setting; however, those who set preferences to receive a narrower set of IRRs are less likely to participate.

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Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?

Abstract

Keywords

ASJC Scopus subject areas

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