Eliciting Willingness and Beliefs towards Participation in Genetic Psychiatric Testing in Black/African American Mothers at Risk for Depression

Abstract

Black/African American women are at high risk for depression, yet are underrepresented in psychiatric genetic research for depression prevention and treatment. Little is known about the factors that influence participation in genetic testing for Black/African American women at risk. The purpose of this study was to elicit the beliefs that underlie participation in genetic testing for depression in Black/African American mothers, a subgroup at high risk. Willingness to participate in genetic testing procedures was also determined. A qualitative, descriptive design was employed. Exactly 19 mothers aged 21–42 completed open-ended questionnaires. Directed content and descriptive analyses of the text were conducted based on the Theory of Planned Behavior. Salient beliefs included: behavioral advantages—diagnosing/detecting depression (31.6%), finding cure/treatment (21.1%); disadvantages—not finding follow-up treatment/help (21.1%); salient referents, who approves—family members (47.4%), agencies/organizations (26.3%); who disapproves—church associates (21.1%). Control beliefs included: barriers—unpleasant/difficult testing procedures (42.1%), limited knowledge about the purpose of testing (26.3%); facilitator—a convenient location (21.1%). Most mothers (89.5%) indicated willingness to participate in testing. Interventions can target families, address barriers, emphasize future benefits, and use convenient locations and community-based participatory research methods. Policies can address social determinants of participation to increase inclusion of these mothers in psychiatric genetic research.

The ethical challenges of diversifying genomic data: A qualitative evidence synthesis

“…Both reviews and the workshop discussions highlighted that underrepresentation of diverse ethnic groups in the genomic workforce and lack of diversity amongst genomic researchers (Bentley et al, 2020 ; Lewis-Fernández et al, 2018 ) play their own part in perpetuating inequities. A diverse workforce was considered crucial for reducing inequities in healthcare and scientific research and realising the promise of genomics (Aviles-Santa et al, 2017 ; Atkins et al, 2020 ; Hiratsuka et al, 2020 ; Bonham and Green, 2021 ), as well as enhancing innovation and creativity that results from more varied lived experiences and perspectives (Lee et al, 2019 ). The absence of diversity in the workforce has the potential to lead to a loss of voices in developing hypotheses and leading research (Bentley et al, 2020 ; Bonham and Green, 2021 ).…”

“…Cultural factors can impact people’s attitudes towards biobanking and the sharing of genomic data (Abadie and Heaney, 2015 ; Anie et al, 2021 ; Canedo et al, 2020 ; Haring et al, 2018 ; Hiratsuka et al, 2020; Lysaght et al, 2020 ), as well as access to medical help (Atkins et al, 2020 ) and affecting health outcomes more generally (Aviles-Santa et al, 2017 ). Incorporating cultural values in research practices was perceived necessary for improving diversity (Jacobs et al, 2010 ; Aviles-Santa et al, 2017 ; Haring et al, 2018 ; Kraft et al, 2018 ; Bentley et al, 2020 ; Hiratsuka et al, 2020 ; Hendricks-Sturrup and Johnson-Glover, 2021 ; Fatumo et al, 2022 ).…”

“…workforce was considered crucial for reducing inequities in healthcare and scientific research and realising the promise of genomics (Aviles-Santa et al, 2017;Atkins et al, 2020;Bonham and Green, 2021), as well as enhancing innovation and creativity that results from more varied lived experiences and perspectives (Lee et al, 2019). The absence of diversity in the workforce has the potential to lead to a loss of voices in developing hypotheses and leading research (Bentley et al, 2020;Bonham and Green, 2021).…”

Framing Effects on Decision-Making for Diagnostic Genetic Testing: Results from a Randomized Trial

“…The other three frames (enhanced choice) were derived from the Theory of Planned Behavior (TPB) [ 14 ]. The TPB is a well-validated framework that has been applied widely to understand and predict social and health behavior [ 25 ] that has also been applied to decision-making in genetic counseling [ 12 , 15 , 16 , 17 ]. The TPB posits that intention is the immediate precursor of behavior.…”

“…We sought to determine the role of framing effects on genetic testing decision-making to inform clinical practices for pre-test genetic counseling. The Theory of Planned Behavior (TPB) [ 14 ] has been employed in the field of genetic counseling [ 15 ] to better understand and predict behaviors around prenatal genetic testing [ 16 ], testing for genetic susceptibility [ 17 ], and expanded carrier screening [ 12 ]. Guided by the TPB, we aimed to examine how presenting information in different ways (i.e., choice architecture, ‘framing’) affects cognitions/decisions of individuals facing a hypothetical genetic testing decision.…”