Hillyer Grace C, Schmitt Karen M, Reyes Andria, Cruz Alejandro, Lizardo Maria, Schwartz Gary K, Terry Mary Beth
Department of Epidemiology, Mailman School of Public Health, New York, NY, USA.
Herbert Irving Comprehensive Cancer Center of Columbia University, New York, NY, USA.
J Genet Couns. 2020 Apr;29(2):247-258. doi: 10.1002/jgc4.1244. Epub 2020 Mar 10.
Focusing screening and treatment to those most likely to benefit is the promise of precision medicine but inequitable distribution of precision medicine innovations may exacerbate health disparities. We investigated whether complex genomic concepts can be successfully communicated to diverse populations. Incorporating principles of Community-based Participatory Research, we created a precision medicine curriculum tailored to the needs of our predominantly Hispanic community. We administered the curriculum over 26 months, assessed pre- and post-test comprehension of 8 genetics-related terms, and compared comprehension differences based on demography and health literacy. In total, 438 individuals completed pre-/post-test assessments. At pre-test, 45.6% scored ≥75% across eight major constructs; 66.7% at post-test. Comprehension increased for 7/8 terms with greatest pre/post-test increases for 'mutation' (55% to 78%) and 'sporadic' (34% to 59%). Mean pre-test comprehension scores (≥75%) were lower for Spanish versus. English speakers; mean post-test scores were equivalent. No heterogeneity by demographics or health literacy was observed. We demonstrate that a brief community educational program can improve knowledge of complex genomic concepts. Interventions to increase understanding of genomic concepts underlying precision medicine are key to patients making informed treatment and prevention decisions and may lead to more equitable uptake of precision medicine initiatives.
将筛查和治疗聚焦于最有可能受益的人群是精准医学的前景，但精准医学创新的不公平分配可能会加剧健康差距。我们调查了复杂的基因组概念是否能够成功地传达给不同人群。我们纳入基于社区的参与性研究原则，创建了一个针对以西班牙裔为主的社区需求的精准医学课程。我们在26个月的时间里实施了该课程，评估了对8个与遗传学相关术语的测试前和测试后的理解情况，并根据人口统计学和健康素养比较了理解差异。共有438人完成了测试前/后的评估。在测试前，45.6%的人在八个主要概念上的得分≥75%；在测试后这一比例为66.7%。8个术语中有7个的理解有所提高，其中“突变”（从55%提高到78%）和“散发”（从34%提高到59%）在测试前/后的提高幅度最大。讲西班牙语者的测试前平均理解分数（≥75%）低于讲英语者；测试后的平均分数相当。未观察到人口统计学或健康素养方面的异质性。我们证明，一个简短的社区教育项目可以提高对复杂基因组概念的认识。增强对精准医学潜在基因组概念理解的干预措施是患者做出明智的治疗和预防决策的关键，并且可能会使精准医学计划的采用更加公平。
