Effect of health literacy on intentions to donate to a biobank among diverse women

Health literacy has been shown to affect comprehension of informed consent information. Research is needed regarding how health literacy and model of consent impact intention to donate to a biobank.

We conducted a three-arm randomized experiment to analyze how model of consent affected biobank donation intentions among 281 women (age ≥35). We developed plain language brochures providing supplemental consent information for a biobank based on three models of consent: notice (i.e., participants notified that their biospecimens may be used in future research); broad (i.e., participants give blanket permission for biospecimens to be used in future research); and study-specific (i.e., participants give consent for each future research study).  Intention to donate was assessed on a four-point Likert scale. Health literacy was assessed using the Rapid Estimate of Adult Literacy in Medicine-Revised. The association of health literacy with intentions to donate was analyzed using chi-squared test.

The majority of participants were Black (59%) and had household incomes of less than $35,000 (69%); mean age was 54 years.  For the notice model, 40% “definitely” intended to participate, compared with 42% for the broad model and 59% for the study-specific model. Participants with limited health literacy were significantly less likely to definitely intend to donate with the study-specific model (p=0.03). Model preference did not vary by level of health literacy.

 Health literacy affected intention to donate to a biobank based on one model of consent. Educational interventions aimed at improving comprehension of consent information may also affect intentions to donate.