Attitudes of African-American parents about biobank participation and return of results for themselves and their children

Abstract

Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results. Methods We used a mixed-method approach in order to study parents' attitudes toward the return of research results regarding themselves and their children. Participants attended four two-hour, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre- and post-engagement surveys. Results We recruited 45 African-American adults whose children received medical care at two health care facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enroll themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre- and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared. Discussion Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes.

Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study

“…This differs from the findings of previous research in which non-Hispanic Whites were significantly more likely than ethnic minorities to enroll in a biobank (Ridgeway et al 2013), and African Americans have expressed significant distrust when discussing biobank participation (Halverson and Ross 2012). This could perhaps be due to the setting of the present study: participants for the present interviews were recruited from a hospital outpatient clinic which accepts patients with no insurance, Medicaid and self co-pay as well as those with insurance.…”

“…Although many altruistic and personal reasons for participating were expressed by primarily African American and Hispanic biobank participants in one focus group study (Streicher et al 2011), distrust was found to be a major theme expressed by African Americans when discussing biobank participation in another focus group study (Halverson and Ross 2012). Non-Hispanic Whites were more likely than individuals of other racial and ethnic groups to enroll in a clinicbased biobank (Ridgeway et al 2013).…”

Genetic research participation in a young adult community sample

“…Strong relationships have been found to be important for involving minorities in genetic research (Yancey et al 2006). A history with a project requesting samples may contribute to the participants' level of trust or comfort in providing biological samples and willingness to agree to a procedure that is more invasive (CorbieSmith et al 1999(CorbieSmith et al , 2002Cox et al 2007;Halverson and Ross 2012). Our collection procedure also optimized building rapport, trust, and personalization.…”

Attitudes of parents toward the return of targeted and incidental genomic research findings in children

“…2,23,24 We believe our findings will help researchers across disciplines as they grapple with the inevitability of uncovering genomic research findings potentially relevant to the child and the extended family.…”