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Community education to enhance the more equitable use of precision medicine in Northern Manhattan
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-03-10 , DOI: 10.1002/jgc4.1244
Grace C. Hillyer 1, 2 , Karen M. Schmitt 2, 3 , Andria Reyes 2 , Alejandro Cruz 2 , Maria Lizardo 4 , Gary K. Schwartz 2, 5 , Mary Beth Terry 1, 2
Affiliation  

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.

中文翻译:

社区教育以提高曼哈顿北部地区更精确地使用精密医学

将筛查和治疗重点放在最有可能受益的人群上是精密医学的希望,但是精密医学创新的不公平分配可能加剧健康差异。我们调查了复杂的基因组概念是否可以成功地传达给不同的人群。结合基于社区的参与性研究的原则,我们创建了适合我们主要是西班牙裔社区需求的精准医学课程。我们在长达26个月的时间里对课程进行了管理,评估了8个与遗传学相关的术语的测试前和测试后理解力,并根据人口统计学和健康素养比较了理解力差异。总共438个人完成了测试前/测试后评估。在预测试中,在八种主要结构中,有45.6%的得分≥75%;测试后为66.7%。理解力提高了7/8个字词,其中“变异”(55%至78%)和“零星”(34%至59%)的测试前/测试后增加最大。西班牙人的测试前平均理解分数(≥75%)较低。英语使用者; 测试后的平均分数是相等的。没有观察到人口统计学或健康素养的异质性。我们证明了简短的社区教育计划可以提高对复杂基因组概念的了解。进行干预以增加对精确医学基础的基因组概念的理解,是患者做出知情治疗和预防决策的关键,并且可能导致更公平地采用精确医学计划。测试后的平均分数是相等的。没有观察到人口统计学或健康素养的异质性。我们证明了简短的社区教育计划可以提高对复杂基因组概念的了解。进行干预以增加对精确医学基础的基因组概念的了解,是患者做出知情治疗和预防决策的关键,并且可能导致更公平地采用精确医学计划。测试后的平均分数是相等的。没有观察到人口统计学或健康素养的异质性。我们证明了简短的社区教育计划可以提高对复杂基因组概念的了解。进行干预以增加对精确医学基础的基因组概念的了解,是患者做出知情治疗和预防决策的关键,并且可能导致更公平地采用精确医学计划。
更新日期:2020-04-22
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