Susan Racine Passmore1, Amelia M Jamison2, Gregory R Hancock3, Moaz Abdelwadoud4, C Daniel Mullins4, Taylor B Rogers5, Stephen B Thomas6. 1. Collaborative Center for Health Equity, University of Wisconsin, Madison, Wisconsin, USA, passmore2@wisc.edu. 2. Center for Health Equity, University of Maryland, College Park, Maryland, USA. 3. Department of Human Development and Quantitative Methodology, University of Maryland, College Park, Maryland, USA. 4. Department of Pharmaceutical Health Services Research, University of Maryland, Baltimore, Maryland, USA. 5. Department of Health Policy and Management, University of California, Los Angeles, California, USA. 6. Department of Health Policy and Management, University of Maryland, College Park, Maryland, USA.
Abstract
AIMS: This 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. METHODS: We 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. RESULTS: Quantitative 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. CONCLUSION: This 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.
AIMS: This 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. METHODS: We 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. RESULTS: Quantitative 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. CONCLUSION: This 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.
Authors: Craig S Fryer; Susan R Passmore; Raymond C Maietta; Jeff Petruzzelli; Erica Casper; Natasha A Brown; James Butler; Mary A Garza; Stephen B Thomas; Sandra C Quinn Journal: Qual Health Res Date: 2015-03-13
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Authors: Richard Milne; Katherine I Morley; Mohamed A Almarri; Shamim Anwer; Jerome Atutornu; Elena E Baranova; Paul Bevan; Maria Cerezo; Yali Cong; Alessia Costa; Christine Critchley; Josepine Fernow; Peter Goodhand; Qurratulain Hasan; Aiko Hibino; Gry Houeland; Heidi C Howard; S Zakir Hussain; Charlotta Ingvoldstad Malmgren; Vera L Izhevskaya; Aleksandra Jędrzejak; Cao Jinhong; Megumi Kimura; Erika Kleiderman; Brandi Leach; Keying Liu; Deborah Mascalzoni; Álvaro Mendes; Jusaku Minari; Dianne Nicol; Emilia Niemiec; Christine Patch; Jack Pollard; Barbara Prainsack; Marie Rivière; Lauren Robarts; Jonathan Roberts; Virginia Romano; Haytham A Sheerah; James Smith; Alexandra Soulier; Claire Steed; Vigdis Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H Voigt; Nan Wang; Anne V West; Go Yoshizawa; Anna Middleton Journal: Genome Med Date: 2021-05-25 Impact factor: 11.117