Characteristics Of Likely Precision Medicine Initiative Participants Drawn From A Large Blood Donor Population

Abstract

A goal of the Precision Medicine Initiative All of Us Research Program (AoURP) is recruitment of participants who reflect the diversity of the US. Recruitment from among blood bank donors, which may better reflect the demographic makeup of local communities, is one proposed strategy. We evaluated this strategy by analyzing the results of a survey of San Diego Blood Bank donors conducted in November 2015. Whites were more likely than nonwhites to respond to the survey (7.1 percent versus 3.9 percent). However, race was not a significant predictor of interest in participating in precision medicine research. Using census data linked to donors' ZIP codes, we also found that people who indicated interest in research participation were more likely to come from regions with higher educational attainment. Although blood banks represent a viable recruitment strategy for AoURP, our findings indicate that bias toward inclusion of whites and more highly educated people persists.

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies

“…Less favorable views about the value of research predicted a lower willingness to participate in research (Bloss et al, 2018). Importantly, while some studies reported a correlation between being a member of a racial/ethnic minority group (Hispanic, African American, or Asian American) and decreased willingness to participate (n = 5; Aagaard-Tillery et al, 2006;Bloss et al, 2018;Dye et al, 2016;Hensley Alford et al, 2011;Sanderson et al, 2017), other studies found that race and ethnicity were not predictors of consent for research…”

“…Factors that clearly predicted a higher likelihood of participating in research included greater perceived benefits and values to participating in research (Bloss et al, 2018;Halbert et al, 2006;Sanderson et al, 2017), fewer concerns about the limitations and risks of research (Halbert et al, 2006;Sanderson et al, 2017), greater willingness to share personal health information (Bloss et al, 2018), fewer informational needs (Sanderson et al, 2017), and higher satisfaction with healthcare providers (Sheppard et al, 2018). Less favorable views about the value of research predicted a lower willingness to participate in research (Bloss et al, 2018).…”

“…Factors that clearly predicted a higher likelihood of participating in research included greater perceived benefits and values to participating in research (Bloss et al, 2018;Halbert et al, 2006;Sanderson et al, 2017), fewer concerns about the limitations and risks of research (Halbert et al, 2006;Sanderson et al, 2017), greater willingness to share personal health information (Bloss et al, 2018), fewer informational needs (Sanderson et al, 2017), and higher satisfaction with healthcare providers (Sheppard et al, 2018). Less favorable views about the value of research predicted a lower willingness to participate in research (Bloss et al, 2018). Importantly, while some studies reported a correlation between being a member of a racial/ethnic minority group (Hispanic, African American, or Asian American) and decreased willingness to participate (n = 5; Aagaard-Tillery et al, 2006;Bloss et al, 2018;Dye et al, 2016;Hensley Alford et al, 2011;Sanderson et al, 2017), other studies found that race and ethnicity were not predictors of consent for research…”

“…Ten studies included Asian Americans in their study populations (Aagaard-Tillery et al, 2006;Bloss et al, 2018;Culhane-Pera et al, 2017;Hull et al, 2008;Jazwinski et al, 2013;Lakes et al, 2013;Rew et al, 2010;Sanderson et al, 2017;Sheppard et al, 2018;Simon et al, 2017). High consent rates among Asian American participants were reported by Culhane-Pera et al, and no American participants were less likely than other groups to indicate interest in a precision medicine research study.…”

“…Nine studies included Hispanic individuals in their study populations (Aagaard-Tillery et al, 2006;Almeling & Gadarian, 2014;Frazier et al, 2006;Hooper et al, 2013;Hull et al, 2008;Jazwinski et al, 2013;Lakes et al, 2013;Nodora et al, 2016;Rew et al, 2010). Two studies reported a lower willingness to participate in genetic testing and research among Hispanic participants compared with other ethnic groups (Aagaard-Tillery et al, 2006;Bloss et al, 2018). Conversely, Jazwinski et al described similar rates of participation in research between Hispanic participants and other ethnic groups, and Nodora et al reported high rates of consent for research among their all-Hispanic participant population.…”