Abstract
Biobanks are essential resources for advancing cancer research. Research conducted with stored biospecimens can provide critical societal benefits, including advancements in oncogenomics, pharmacogenetics, and enhanced medical treatments and improved health outcomes. In order for biobanks to provide broad societal benefits and address health disparities, participation by individuals from diverse groups is needed. Various models of informed consent have been proposed for future research use of biobanked specimens, differing in level of donor control and amount of information received. Data are needed regarding how different consent models might affect participation in biobanks, particularly for individuals from racial and ethnic minority groups. We therefore conducted semi-structured interviews with 60 women to examine their attitudes and preferences for different models of informed consent for secondary research uses of biospecimens. Recruitment was stratified by race (Black/White) and prior biobank participation (yes/no). Two coders independently coded all interview transcripts; analysis was based on consensus codes. The qualitative thematic analysis was conducted using NVivo. The results showed that the majority of Black and White participants preferred “broad” consent, which requires separate blanket permission for biospecimens to be used in multiple future research studies and provides participants with general information about possible future studies. More Black participants than White participants preferred “study specific” consent, which requires separate consent for each future research study and provides specific information about that study. We found that reasons for preferring a particular model of consent often differed by race. For example, Black participants more often spoke of the importance of being informed of what was happening with their sample, of research study activities, or being informed or notified if their sample was used. In reference to “study specific” consent, one Black participant said, “[Study-specific] continuously keeps you updated which is… you know you gotta be happy with constantly getting the updates.” In contrast, White participants often felt that giving permission once for their sample to be used in multiple future research studies (broad consent), rather than before each future study (study specific consent), was sufficient. In reference to why she liked “broad” consent, one White participant noted, “Well because they ask me once and then they have my permission to use my sample in multiple future studies.” Feeling respected was also an important factor affecting preferences among Black participants. One Black participant spoke about “broad” consent, “[Y]ou're being courteous, and you're asking me, 'Will you also say yes to this?' ” There were some common themes across racial groups. Both Black and White participants felt that the notice model, in which participants are notified that their biospecimens may be used in research, violated their rights. One White participant commented, “I don't think it respects the… individual and what right they have to do with their body or their own tissue.” These findings are essential to develop informed consent processes for biobanks that address the information most important to individuals from various racial and ethnic minority groups and allow them to make informed decisions about biobank participation.
Citation Format: Katherine Brown, Bettina Drake, Hannah Perkins, Leslie Wolf, James DuBois, Sarah Gehlert, Melody Goodman, Kimberly Kaphingst. Differences in preferences for models of informed consent may affect racial composition of biobanks. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A04.
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