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精准医学研究招募的路线图:公众参与意愿的实证评估。

A roadmap for precision medicine research recruitment: empirical assessment of the public's willingness to participate.

机构信息

Department of Genetics, Cell Biology & Development, University of Minnesota - Twin Cities, Minneapolis, MN 55455 USA.

Law School, Medical School & Consortium on Law & Values in Health, Environment & The Life Sciences, University of Minnesota - Twin Cities, Minneapolis, MN 55455 USA.

出版信息

Per Med. 2020 Sep;17(5):345-359. doi: 10.2217/pme-2019-0125. Epub 2020 Aug 17.

Abstract

Precision medicine research recruitment poses challenges. To better understand factors impacting recruitment, this study assessed hypothetical willingness, public opinions of and familiarity with precision medicine research. Adult attendees (n = 942) at the 2017 Minnesota State Fair completed an electronic survey. Few respondents had heard of 'precision medicine' (18%), and familiarity came mostly from media (43%). Fifty-six percent expressed hypothetical willingness to participate in precision medicine research. Significant predictors of willingness were: comfort with unconditional research; perceiving precision medicine research as beneficial, trustworthy and confidential; having a graduate degree; comfort with self- but not family-participation; and familiarity with precision/personalized medicine. This study identified predictors of hypothetical willingness to participate in precision medicine research. Alternative recruitment strategies are needed.

摘要

精准医学研究招募面临挑战。为了更好地了解影响招募的因素,本研究评估了假设的参与意愿、公众对精准医学研究的看法和熟悉程度。2017 年明尼苏达州博览会上的成年与会者(n=942)完成了一项电子调查。很少有受访者听说过“精准医学”(18%),而且大多数人是从媒体(43%)上了解的。56%的受访者表示有意愿参与精准医学研究。意愿的显著预测因素有:对无条件研究的舒适度;认为精准医学研究有益、值得信赖和保密;拥有研究生学位;对自己参与而不是家人参与的舒适度;以及对精准/个性化医学的熟悉程度。本研究确定了参与精准医学研究的假设意愿的预测因素。需要采用替代的招募策略。

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