TY - JOUR
T1 - Race, Trust in Doctors, Privacy Concerns, and Consent Preferences for Biobanks
AU - Hong, Soo Jung
AU - Drake, Bettina
AU - Goodman, Melody
AU - Kaphingst, Kimberly A.
N1 - Publisher Copyright:
© 2019 Taylor & Francis Group, LLC.
PY - 2020/8/23
Y1 - 2020/8/23
N2 - 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.
AB - 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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U2 - 10.1080/10410236.2019.1623644
DO - 10.1080/10410236.2019.1623644
M3 - Article
C2 - 31167570
AN - SCOPUS:85067581030
SN - 1041-0236
VL - 35
SP - 1219
EP - 1228
JO - Health Communication
JF - Health Communication
IS - 10
ER -