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.
Keywords: biobank; disparities; genetic testing; informed consent.
© 2020 National Society of Genetic Counselors.