Literature DB >> 31167570

Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks.

Soo Jung Hong1, Bettina Drake2, Melody Goodman3, Kimberly A Kaphingst4,5.   

Abstract

This study investigates how patients' privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals' privacy concerns and trust in doctors were significantly associated with their need for control. Although participants' privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.

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Year:  2019        PMID: 31167570      PMCID: PMC6893100          DOI: 10.1080/10410236.2019.1623644

Source DB:  PubMed          Journal:  Health Commun        ISSN: 1041-0236


  40 in total

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Journal:  Health Commun       Date:  2010-06

6.  Understanding public reactions to commercialization of biobanks and use of biobank resources.

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7.  Secondary consent to biospecimen use in a prostate cancer biorepository.

Authors:  Bettina F Drake; Katherine Brown; Lucy D'Agostino McGowan; Jennifer Haslag-Minoff; Kimberly Kaphingst
Journal:  BMC Res Notes       Date:  2016-07-18

8.  Active choice but not too active: public perspectives on biobank consent models.

Authors:  Christian M Simon; Jamie L'heureux; Jeffrey C Murray; Patricia Winokur; George Weiner; Elizabeth Newbury; Laura Shinkunas; Bridget Zimmerman
Journal:  Genet Med       Date:  2011-09       Impact factor: 8.822

9.  Subjects matter: a survey of public opinions about a large genetic cohort study.

Authors:  David Kaufman; Juli Murphy; Joan Scott; Kathy Hudson
Journal:  Genet Med       Date:  2008-11       Impact factor: 8.822

10.  Public preferences regarding informed consent models for participation in population-based genomic research.

Authors:  Jodyn Platt; Juli Bollinger; Rachel Dvoskin; Sharon L R Kardia; David Kaufman
Journal:  Genet Med       Date:  2013-05-09       Impact factor: 8.822

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  1 in total

1.  User-focused data sharing agreements: a foundation for the genomic future.

Authors:  Carolyn Petersen
Journal:  JAMIA Open       Date:  2019-10-01
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