Abstract C12: An examination of intention to donate biospecimen among women considering consent models and health care discrimination
Authors: Stewart Karyn , Brown Katherine , Drake Bettina , Gehlert Sarah , Wolf Leslie , Dubois James , Perkins Hannah , Lyons Sarah , Goodman Melody , Kaphingst Kimberly 
Published: May 2016

The purpose of this study is to examine the influence of different consent models on the intention to donate a biospecimen for use in secondary research, accounting for having experienced racial health care discrimination. Specifically, the influence of the notice, broad consent, and study-specific consent models is explored. Biospecimen donation is important for the advancement of medical cancer research. Discrimination may impede biospecimen donation. The analyses presented offer some indication of the type of consent model that may have the strongest potential to minimize negative effects of health care discrimination on intentions to donate biospecimen. In this study, self-identified non-Hispanic White and non-Hispanic Black women age 35 and older were recruited to complete a survey that was primarily self-administered. The Rapid Estimate of Adult Literacy in Medicine, Revised (REALM-R) component of the survey was administered by trained research staff. In addition to baseline questions, the survey included a randomized component, which involved participants seeing three brochures explaining each of the consent models in a randomized order. Participants were asked to indicate their intentions to donate following exposure to each of the models and asked to pick their preferred model after having viewed all three. Preliminary chi-square analyses suggest discrimination negatively influences willingness to consent to donate. Specifically, there is a significant difference by general intention to donate as well as intention to donate to multiple studies, Washington University studies, and studies in which Protected Health Information (PHI) is attached to the sample. Of note, those having experienced health care discrimination are significantly different regarding general intentions to donate from those who had not experienced health care discrimination in intentions to donate after receiving brochures about both notice (p=0.0101) and broad consent (p=0.0002) models. Also, participants who reported experiencing health care discrimination are significantly different from those who had not reported experiencing health care discrimination for intention to donate to multiple studies and if PHI was attached to the sample across all consent model types - notice, broad, and study-specific. In each case, noticeably smaller percentages of those who reported experiencing at least some health care discrimination indicated intentions to definitely consent to donate. These preliminary findings suggest health care discrimination can negatively affect the potential benefits of cancer research via hindering biospecimen donation. In additional analyses, we will be able to determine the influence of additional sociodemographic factors on the relationship between the experience of health care discrimination and intentions to donate biospecimen. Ultimately, reducing the likelihood and actual occurrences of health care discrimination through addressing the root causes of health care discrimination is an important goal. Examining the influence of consent model types on the relationships between health care discrimination and intentions to donate biospecimen can provide cues as to models of information to provide that can minimize the impact of discrimination on biospecimen donation. Appropriate models of information to provide may vary by study type.

Citation Format: Karyn Stewart, Katherine Brown, Bettina Drake, Sarah Gehlert, Leslie Wolf, James Dubois, Hannah Perkins, Sarah Lyons, Melody Goodman, Kimberly Kaphingst. An examination of intention to donate biospecimen among women considering consent models and health care discrimination. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C12.