An analysis of patients’ and caregivers’ willingness to participate in genetic studies on Parkinson disease found that although overall levels of motivation were similar in Hispanic and non-Hispanic patients, the reasons behind this interest varied between the groups.
The findings were published in Frontiers in Genetics as part of the journal’s collection of research on the importance of diversity in precision medicine research.
As the study authors noted, a lack of diversity in genomic research limits researchers’ understanding of population-specific differences in disease risk and reduces the odds that underserved racial and ethnic groups will be able to access precision medicine targeted to their genome. Some potential explanations of the disparity in representation is that racial/ethnic minority patients mistrust or feel stigmatized by those conducting the research, cannot access research opportunities, and are more rarely invited to participate in research.
The researchers of this study aimed to learn more about the motivations of Hispanic patients with PD to participate in research due to the existing evidence of disparities in referrals to clinical trials or deep brain stimulation surgery among these patients even though PD and Alzheimer disease are more prevalent in Hispanics than white non-Hispanics.
Patients with PD seen by movement disorder specialists at the University of Miami Health System’s PD clinic, as well as their caregivers, were approached about joining a hypothetical PD genetic research study and were asked to complete a survey on the reasons behind their decision to participate or refuse. The researchers chose this study site because about 35% of patients in the health system identify as Hispanic and the clinic “serves as the premier referral center” for foreign patients with movement disorders, particularly those from Latin America and the Caribbean.
After indicating whether they were willing to participate in the genetic study, participants were asked to select reasons that influenced their decision. Those who did agree were asked to choose from 6 potential reasons (eg, “I want to help find a cure for PD”), whereas those who refused were given a choice of 10 potential reasons (eg, “I don’t trust what will happen with my sample”). They were also asked to provide information on age, sex, race/ethnicity, and level of education.
Overall willingness to participate was very similar across Hispanic and non-Hispanic patients, with 97.2% and 97.1%, respectively, indicating they were willing to take part (P = 1.00). Willingness was lower among caregivers but still similar between the groups (86.2% and 83.3%, respectively).
Hispanic and non-Hispanic patients most commonly chose the same reason for wanting to participate in the study, with “to help find a cure for PD” endorsed by 94.2% and 93.8%, respectively (P = .68). However, there were differences in reporting certain reasons for participating; 45.7% of Hispanic patients and 75.0% of non-Hispanic patients said they wanted “to improve science and knowledge about PD” (P = .01). The pattern of results observed across the ethnic groups of caregivers was similar to that seen in the patients.
When analyzing the data by education level regardless of ethnicity, researchers found that patients with higher education were more likely to choose “to improve science and knowledge about PD” as a motivation for participation than those without higher education (62.5% vs 26.7%; P = .001). They did not observe differences in motivation in the caregiver group based on education level.
The researchers suggested that Hispanic patients, when deciding to participate in studies, might prioritize more personal reasons over an interest in research and science. They also noted potential signs of a correlation between doctor–patient relationship and willingness to participate.
Because Hispanic participants are still underrepresented in medical research despite the high willingness to participate seen in this study, the authors wrote that “reduced invitation to participate” may be the cause of this continuing disparity.
“It is therefore important for the medical and scientific fields to make a concerted effort to reach out to the different communities and truly establish a relationship as well as inform on and extend participation in PD studies to all races and ethnicities,” they concluded. “This investment in community outreach will lead to a more equal representation in research and ultimately to a reduction in health disparities.”
Nuytemans K, Manrique CP, Uhlenberg A, et al. Motivations for participation in Parkinson disease genetic research among Hispanics versus non-Hispanics. Front Genet. 2019;10:658. doi: 10.3389/fgene.2019.00658.