Skip to main page content
Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Mar 13;11:120.
doi: 10.3389/fgene.2020.00120. eCollection 2020.

Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age

Free PMC article

Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age

Michael L Cuccaro et al. Front Genet. .
Free PMC article


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.

Keywords: genetics; minorities; motivation; multiple sclerosis; participation; research.


Figure 1
Figure 1
Percentage of endorsements per the respective reasons for participation in the overall sample.

Similar articles

See all similar articles


    1. Amendola L. M., Robinson J. O., Hart R., Biswas S., Lee K., Bernhardt B. A., et al. (2018). Why patients decline genomic sequencing studies: experiences from the CSER consortium. J. Genet. Couns. 5, 1220–1227. 10.1007/s10897-018-0243-7 - DOI - PMC - PubMed
    1. Biesecker L. G., Green R. C. (2014). Diagnostic clinical genome and exome sequencing. N. Engl. J. Med. 12, 1169–1170. 10.1056/NEJMra1312543 - DOI - PubMed
    1. Bonham V. L., Green E. D., Perez-Stable E. J. (2018). Examining how race, ethnicity, and ancestry data are used in biomedical research. JAMA 320 (15), 1533–1534. 10.1001/jama.2018.13609 - DOI - PMC - PubMed
    1. Bustamante C. D., Burchard E. G., De la Vega F. M. (2011). Genomics for the world. Nature 7355, 163–165. 10.1038/475163a - DOI - PMC - PubMed
    1. Cooke Bailey J. N., Crawford D. C., Goldenberg A., Slaven A., Pencak J., Schachere M., et al. (2018). Willingness to participate in a national precision medicine cohort: attitudes of chronic kidney disease patients at a cleveland public hospital. J. Pers. Med. 8 (3), 21. 10.3390/jpm8030021 - DOI - PMC - PubMed

LinkOut - more resources