Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study

Abstract

In order for DNA biobanks to be a valuable reservoir of genetic information, large numbers of participants from all racial and ethnic backgrounds need to be recruited. This study explored reasons for participating in a new biobank among primarily Hispanic and African American individuals, as well as their general attitudes towards genetic research, and their views on obtaining genetic tests. Focus groups were conducted with Mount Sinai Biobank participants recruited from predominantly lower income, minority communities. The topic guide included questions on The Mount Sinai Biobank, genetic research, and genetic testing. All focus groups were audio recorded, transcribed, and analyzed using thematic analysis. The six focus groups comprised 43 participants: 39 females and four males, aged 27-76 years, with a median household income category of $20,000-$39,999. Twenty-one participants were Hispanic, 20 African American, one Asian, and one White. Participants' reasons for participating in the biobank included altruism, personal and family benefit, and general curiosity. Although there was evidence of conflation between genetic research and genetic testing, most participants held positive views of genetic research and expressed interest in receiving personal genetic test results. Participants wanted to learn more about genetic research and suggested various venues such as health fairs for disseminating information. Participation in biobanks by racial and ethnic minorities is apparently driven by altruism, and desire for personal or collective health benefits. genetics and genetic research, and made useful suggestions regarding information dissemination mechanisms.

Engaging diverse populations about biospecimen donation for cancer research

“…Participants from all groups offered specific ideas about improving education, communication, and processes for engaging their community members, overcoming impediments, and providing culturally acceptable methods to collect and use biospecimens. These findings reflect the need for researchers to identify the inherent value of new innovations by community members regarding research goals (Streicher et al 2011). As such, one then wonders how researchers can harness this keen public interest in biobanking in a way that supports the participation of diverse groups in biobanking.…”

“…To address these needs, institutions with biobank repositories have conducted deliberative engagement with participants to increase the community's knowledge of biobanking and inform institutional policies Lemke et al 2012;O'Doherty and Hawkins 2010). The findings from these studies suggest that such practices increase public support for biobanking, engender trust among participants, and translate public input into policy (O'Doherty et al 2012;Streicher et al 2011).…”

“…In recognizing the increasing utilization of biospecimens in cancer research, community-based approaches are increasingly important to develop new ways (i.e., biobanking tours, community forums, etc.) to reach communities and generate discussions and shared understandings about this topic (Lemke et al 2012;Streicher et al 2011). As such, it became evident that little was known about community members' knowledge, attitudes, beliefs, and informational needs about biospecimen research and biobanking.…”

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

“…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

“…Many reports offer suggestions as to what people require in order to make a decision to donate a DNA sample (Jenkins et al 2011;Streicher et al 2011). Ethical oversight, language preference, clarity of communications (Kozlowski et al 2002), beliefs about benefits of participation (Halbert et al 2006), and trust between participants and investigators (Corbie-Smith et al 2002) should not be ignored.…”