Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age
Understanding Participation in Genetic Research Among Patients With Multiple Sclerosis: The Influences of Ethnicity, Gender, Education, and Age
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DOI：
10.3389/fgene.2020.00120
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发表时间：
2020-03-13
影响因子：
3.7
通讯作者：
McCauley, Jacob L.
中科院分区：
文献类型：
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作者：
Cuccaro, Michael L.;Manrique, Clara P.;McCauley, Jacob L.
本研究探讨了参与多发性硬化症 (MS) 风险基因研究的原因。我们的样本由 101 名被诊断患有多发性硬化症的患者组成，他们被询问参加多发性硬化症遗传易感性研究。参与者主要是西班牙裔（80%）、女性（80%）和受过良好教育的（71%），至少具有一定程度的大学教育。在我们联系的 101 人中，有 95 人同意参与，并且是本报告的重点。在参与者中，最常提到的参与原因是寻找多发性硬化症的治疗方法 (56%)、患有多发性硬化症 (46%) 和帮助后代 (37%)。比较种族群体的回归模型中，西班牙裔人比非西班牙裔人更频繁地支持将多发性硬化症作为参与的理由（HI 52%，非西班牙裔 19%，p = 0.015），而非西班牙裔人则比西班牙裔人更频繁地支持寻找新的和更好的治疗方法（西班牙裔 17%，非西班牙裔 50%，p = 0.003）。在我们的三个年龄组中，年轻人更频繁地支持寻找多发性硬化症的治疗方法（18-35 岁人群中为 74%，36-55 岁人群中为 56%，55 岁以上人群中为 39%）。我们的结果表明，参与基因研究的动机因种族而异，在制定更具包容性的疾病相关基因研究计划时需要考虑这些影响。未来的努力应集中于制定标准方法来理解遗传和基因组研究的参与，特别是在代表性不足的群体中，作为吸引所有人群的催化剂。
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.