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

Soo Jung Hong, Bettina Drake, Melody Goodman, Kimberly A. Kaphingst

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalHealth Communication
DOIs
StatePublished - Jan 1 2019

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Privacy
privacy
African Americans
Linear Models
Precision Medicine
Linear regression
Medicine
Informed Consent
Research
Health
Communication
medicine
regression
communication
interaction
health
management

ASJC Scopus subject areas

  • Health(social science)
  • Communication

Cite this

Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks. / Hong, Soo Jung; Drake, Bettina; Goodman, Melody; Kaphingst, Kimberly A.

In: Health Communication, 01.01.2019.

Research output: Contribution to journalArticle

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