Abstract
This study examined reasons for participation in a genetic study of risk for multiple sclerosis (MS). Our sample consisted of 101 patients diagnosed with MS who were approached about enrolling in the Multiple Sclerosis Genetic Susceptibility Study. Participants were predominantly Hispanic (80%), female (80%), and well educated (71%), having at least some level of college education. Of these 101 individuals who were approached, 95 agreed to participate and are the focus of this report. Among enrollees, the most frequently cited reasons for participation were to find a cure for MS (56%), having MS (46%), and helping future generations (37%). Regression models comparing ethnic groups, Hispanics endorsed having MS as a reason to participate significantly more frequently than non-Hispanics (HI 52%, non-HI 19%, p = 0.015) while non-Hispanics endorsed finding new and better treatments significantly more frequently than Hispanics (Hispanic 17%, non-Hispanic 50%, p = 0.003). Among our three age groups, younger individuals endorsed finding a cure for MS significantly more frequently (74% of 18–35-year olds vs. 56% of 36–55 year olds vs. 39% of >55 year olds). Our results suggest that motivations for participation in genetic research vary by ethnicity, and that these influences need to be considered in developing more inclusive programs of disease-related genetic research. Future efforts should focus on development of standard methods for understanding participation in genetic and genomic research, especially among underrepresented groups as a catalyst for engaging all populations.
Highlights
It is widely believed that underrepresented groups are less willing to participate in biomedical research due to barriers such as mistrust, stigma, and competing demands, leading to underrepresentation (Shavers et al, 2002; George et al, 2014)
Given the paucity of published methods for evaluating willingness to participate in clinical populations we created questions that reflected the primary themes from other types of qualitative research that assessed willingness to participate in genetic research for reasons such as altruism (e.g.,To help future generations), personal benefit (e.g., I suffer from multiple sclerosis (MS)), and advancing research (e.g., To help improve science and knowledge about MS)
Among the reasons for participating, personal experience with MS (i.e., I suffer from MS), was strongly associated with Hispanics vs. non-Hispanics with an odds ratio of 7.36
Summary
It is widely believed that underrepresented groups are less willing to participate in biomedical research due to barriers such as mistrust, stigma, and competing demands, leading to underrepresentation (Shavers et al, 2002; George et al, 2014). Some studies enroll patients who are from the general population of patients in both hospital and nonhospital setting (Sanderson et al, 2013; Walker et al, 2014; Jones et al, 2017), while others assess factors associated with participation among patients with specific diseases (Parikh et al, 2017) This is an important distinction as motivational factors vary considerably depending on the type of study and population (e.g., clinical trial vs observational study, disease group vs healthy population) (Goodman et al, 2018; Goodman et al, 2019). Acknowledging the concerns raised by Goodman and colleagues around conflating disease and healthy population studies and methods, we believe that asking patients who enroll in genetic studies about their reasons for enrollment is the most informative approach This belief is supported by the work of the Clinical Sequencing Exploratory Research (CSER) consortium, which has investigated multiple facets of participation in genomic research, including why patients decline to participate (Amendola et al, 2018). Given the under inclusion of non-European ancestry groups in genetic and genomic research, a necessary first step is to understand the factors that influence participation and use this information to create more inclusive ascertainment
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