"I'm a Little More Trusting": Components of Trustworthiness in the Decision to Participate in Genomics Research for African Americans.

aimsThis study sought to explore the decision to participate in genomics research for African American individuals. Our overall goal was to explore (1) the attributes that significantly contribute to willingness to participate in genomics research; (2) how these attributes are interpreted (what is their meaning?); (3) how trustworthiness is estimated in the decision to participate in research (i.e., what are the symbolic representations or heuristics of trustworthiness in decision-making?); and (4) how participants see factors to counterweigh each other.

methodsWe sought a methodology that would afford exploration of the compensatory nature of decision-making where some choice attributes may be weighed differently than others as well as the use of heuristics (shortcuts to estimate key concepts in the mentally taxing task of decision-making) for concepts such as trustworthiness. We used a qualitative story deck to create hypothetical research scenarios with variable attributes (i.e., researcher race/ethnicity; institutional affiliation; research goal; and biospecimen requested) to determine how individuals find and interpret information to make decisions about research participation. These semi-structured interviews (n = 82) were conducted in African American barbershops in Baltimore City and Prince George's County, Maryland.

resultsQuantitative and qualitative analysis was completed. Findings include that, even in the absence of interpersonal connection, trustworthiness can be communicated through multiple factors, such as (1) shared values with researchers and (2) familiarity. Conversely, (1) ambiguity, especially regarding the use of biospecimens, (2) negative reputations, and (3) perceptions of "hidden agendas" were associated with a lower willingness to participate. However, the alignment of participant and research goals was weighed more heavily in decisions than other factors.

conclusionThis study finds that negatively assessed characteristics in research design do not result in automatic rejections of participation. Negative assessments can be mitigated by emphasizing the multiple factors that communicate trustworthiness in the consent process, which may improve rates of research participation.