The Program for the Elimination of Cancer Disparities (PECaD)

Washington University, Saint Louis MO

Investigators

Linked publications & trials

Abstract

DESCRIPTION (provided by applicant): Research with stored biospecimens can provide substantial societal benefits, including greater understanding of cancer etiology and discovery of new cancer therapies, but one critical social and ethical issue is the use of samples for research unplanned at the time of biospecimen collection. Various models for consent (i.e., no consent, notice, opt-out, broad consent, study-specific consent) have been proposed for secondary research use of biospecimens, but empirical data on individuals' preferences for different consent models are limited, particularly from those with limited health literacy and from racial and ethnic minority groups. It is critically important to understand the consent preferences of diverse individuals, as participation of all population subgroups in biobanks is essential to reach translational cancer research goals. Based on a social ecological conceptual framework, we will examine preferences for consent models for secondary research uses of biospecimens among a racially and socioeconomically diverse sample of women. Participants will be recruited for all aims through two breast health services mechanisms: (1) participation in a prior study that involved donation of a blood sample for limited cancer research use, and (2) mammography community outreach program. We address the study aims with a sequential mixed-methods design with qualitative interviews followed by a quantitative experiment. The specific aims are to: 1. Investigate preferences for models of consent for secondary research uses of biospecimens among a diverse sample of women. 2. Develop and test brief informed consent documents for three different models of consent for secondary research uses of biospecimens. 3. Compare experimentally the effect of consent model on intentions to donate biospecimens for future research use among a diverse sample of women. These findings will be critical to inform ongoing federal and state policy discussions on models of consent to be used for future research use of human biospecimens. The findings from groups underrepresented in research will be particularly important since the participation of these groups in biobanks is essential to generating findings that will achieve translational research goals of eliminating cancer disparities.