More Diversity, Multifaceted Outreach Needed in Studies of Genetic Screening for Depression

Multifaceted outreach efforts that consider families, emphasize beliefs, explain purposes and procedures, and use community-based participatory methods have potential to enhance diversity in genetic studies on the prevention and treatment of psychiatric disorders and to increase engagement of diverse populations, according to new research published in Archives of Psychiatric Nursing.

“There is a lack of engagement in research by diverse populations that exacerbates mental health disparities,” the study authors wrote. “Beliefs about participation in genetic research impact willingness to participate.”

They investigated 3 types of salient beliefs among a population of 41 multi-ethnic mothers (mean [SD] age, 30.9 [6.6] years), most of whom self-identified as Black/African American (46.3%) or Hispanic/Latino (39.0%). Sixty-six percent were never married, 80.5% were head of the household, and 80.5% were classified as low income.

Questions on salient behavioral beliefs evaluated the advantages of depression treatment/cure, helping others, depression diagnosis/detection, additional research, and causes of depression; disadvantages focused on uncertainty of outcomes/results and trust/confidentiality. Questions on normative beliefs focused on referents (those referred by the participating mothers) who approved or disapproved of participation in genetic trials for depression and would or would not participate in such trials. Control belief questions looked at “the power to perform a behavior based on things that are perceived to make it easier or difficult to perform a behavior,” the authors wrote, meaning barriers and facilitators to participation.

An overwhelming majority of the mothers, 90.2%, said they would be willing to participate in studies of genetic salivary testing for depression. Thirty-nine percent had a score above 16 on the Centers for Epidemiological Studies Depression Scale, which the investigators used to evaluate depression among their participants, and this result indicated “clinically significant levels of depressive symptoms.”

The most common advantageous salient beliefs were the potential for a cure or treatment for depression if the mother was tested (29.3%), generally helping others (26.8%), and possibility of ruling out/diagnosing/detecting depression in themselves or other (26.8%). The most common salient disadvantage belief reported was no disadvantages (39.0%), and this was followed by not knowing how to handle results (22.0%) and lack of trust in how their samples would be used (12.2%).

Among normative beliefs, most referents who approved of trial participation would be family members (46.3%), significant others (19.5%), and friends (17.1%). Church associates were most commonly cited as not approving, followed by family members (14.63%); however, 39.02% also said there would be no disapproval. As for those who would participate if referred, family and friends again were among the most common responses (43.9% and 26.83%, respectively). Thirty-two percent said no one would participate, 19.51% said family would not, and 12.2% said their significant other would not.

The mothers noted these as their top barriers/facilitators to participation:

• Availability of information/lack of knowledge on the purpose of the study, 34.1%
• Unpleasant/difficult study procedures (ie, spitting into a cup), 26.8%
• Location, 24.4%

Thirty-four percent had no barriers and 26.83% had no facilitators.

“Our study is unique. Current studies mainly focus on beliefs towards participation in genetic testing for nonpsychiatric conditions and biomedical research in general in aggregate samples of adults,” the authors wrote when speaking of the clinical importance of their findings. “This is the first study to directly elicit beliefs towards genetic psychiatric testing for depression from a sub-group of low-income and or racial/ ethnic minority mothers who are at high risk for depressive illness and therefore fills an essential gap in the literature.”

Overall, they noted that attitudes and willingness toward participation were positive, diagnostic benefits were a top benefit to participation, and there were more facilitators than barriers to genetic testing for depression, but that the 39% reporting high levels of depressive symptoms mirrors previous study findings on levels of that indicator among ethnic and minority populations.

To increase participation in these types of studies, the researchers recommend a community-based research approach that encourages collaborative discussion, with members and local organizations, because this helps to increase trust.

“Partnered relationships enhance community members' willingness to take actions to engage in activities that improve health,” they concluded. “These discussions can increase the effectiveness of strategies for inclusion of vulnerable disadvantaged groups similar to the present sample of low-income or racial/ethnic-minority mothers.”

Reference

Atkins R, Kelly T-A, Johnson S, et al. Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk. Arch Psychiatr Nurs. Published online July 17, 2022. doi:10.1016/j.apnu.2022.07.002