Relationships of health information orientation and cancer history on preferences for consent and control over biospecimens in a biobank: A race-stratified analysis

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

Research output: Contribution to journalArticle

Abstract

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.

Original languageEnglish (US)
Pages (from-to)479-490
Number of pages12
JournalJournal of Genetic Counseling
Volume29
Issue number3
DOIs
StatePublished - Jun 1 2020

Keywords

  • biobank
  • disparities
  • genetic testing
  • informed consent

ASJC Scopus subject areas

  • Genetics(clinical)

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