TY - JOUR
T1 - Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank
T2 - A race-stratified analysis
AU - Hong, Soo Jung
AU - Drake, Bettina
AU - Goodman, Melody
AU - Kaphingst, Kimberly A.
N1 - Funding Information:
The authors would like to thank the research participants. This study was funded by National Cancer Institute (U54CA153460). The Washington University School of Medicine, the Barnes‐Jewish Hospital Foundation, and Siteman Cancer Center supported this research.
Funding Information:
The authors would like to thank the research participants. This study was funded by National Cancer Institute (U54CA153460). The Washington University School of Medicine, the Barnes-Jewish Hospital Foundation, and Siteman Cancer Center supported this research. Funding information This study was funded by U54CA153460. The Washington University School of Medicine, the Barnes-Jewish Hospital Foundation, and Siteman Cancer Center supported this research. In addition, this project was supported, in part, by funds from the St. Louis Men's Group Against Cancer.
Publisher Copyright:
© 2020 National Society of Genetic Counselors
PY - 2020/6/1
Y1 - 2020/6/1
N2 - In this study, we investigated how patients’ self-reported health information efficacy, relationship with health providers, and cancer history are associated with their preferences for informed consent and need for control over biobank biospecimens. We recruited 358 women aged 40 and older (56% African American; 44% European American) and analyzed the data using multivariable regression models. Results show that African American participants’ health information efficacy was significantly and negatively associated with their need for control over biospecimens and preference for a study-specific model. European American participants’ dependency on doctors was a significant and negative predictor of their preference for a study-specific model. Several significant interaction effects, which varied across races, were found with regard to health information efficacy, personal cancer history, need for control, and preference for a study-specific model. The study findings suggest it is important to consider health information efficacy, relationship with providers, and need for control when developing large diverse biobanks.
AB - In this study, we investigated how patients’ self-reported health information efficacy, relationship with health providers, and cancer history are associated with their preferences for informed consent and need for control over biobank biospecimens. We recruited 358 women aged 40 and older (56% African American; 44% European American) and analyzed the data using multivariable regression models. Results show that African American participants’ health information efficacy was significantly and negatively associated with their need for control over biospecimens and preference for a study-specific model. European American participants’ dependency on doctors was a significant and negative predictor of their preference for a study-specific model. Several significant interaction effects, which varied across races, were found with regard to health information efficacy, personal cancer history, need for control, and preference for a study-specific model. The study findings suggest it is important to consider health information efficacy, relationship with providers, and need for control when developing large diverse biobanks.
KW - biobank
KW - disparities
KW - genetic testing
KW - informed consent
UR - http://www.scopus.com/inward/record.url?scp=85078676188&partnerID=8YFLogxK
U2 - 10.1002/jgc4.1217
DO - 10.1002/jgc4.1217
M3 - Article
C2 - 31990114
AN - SCOPUS:85078676188
SN - 1059-7700
VL - 29
SP - 479
EP - 490
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 3
ER -