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表观遗传学研究的招募:促进知情同意过程

Recruiting for epigenetic research: facilitating the informed consent process.

作者信息

Jallo Nancy, Lyon Debra E, Kinser Patricia Anne, Kelly Debra Lynch, Menzies Victoria, Jackson-Cook Colleen

机构信息

School of Nursing, Virginia Commonwealth University, P.O. Box 980567, Richmond, VA 23298, USA.

出版信息

Nurs Res Pract. 2013;2013:935740. doi: 10.1155/2013/935740. Epub 2013 Jun 6.

DOI:10.1155/2013/935740
PMID:23840949
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3690242/
Abstract

Because the effects of epigenetic (gene-environment interaction) changes have been associated with numerous adverse health states, the study of epigenetic measures provides exciting research opportunities for biobehavioral scientists. However, recruitment for studies focusing on any aspect of genetics poses challenges. Multiple factors, including lack of knowledge regarding a research study, have been identified as barriers to recruitment. Strengthening the informed consent process through extended discussion has been found to be effective in recruiting for research studies in general, yet there is a paucity of information that focused on such a recruitment strategy for epigenetic studies. In this paper, we share our experiences with strategies to strengthen the informed consent process as well as provide samples of materials developed to heighten potential participants' understanding of epigenetics, in 4 epigenetic research studies with women from diverse backgrounds experiencing a range of health issues. The combined enrollment success rate for epigenetic studies using the process was 89% with participants representing a diverse population. We posit that carefully developed recruitment scripts provided a foundation for improving potential participants' understanding of the research project. Easy to understand illustrations of the epigenetic process provided a basis for active engagement and encouraged individual questions.

摘要

由于表观遗传(基因与环境相互作用)变化的影响已与众多不良健康状况相关联,因此表观遗传测量的研究为生物行为科学家提供了令人兴奋的研究机会。然而,针对遗传学任何方面的研究招募都面临挑战。包括对研究缺乏了解在内的多种因素已被确定为招募的障碍。通过延长讨论来加强知情同意过程已被证明在一般研究招募中是有效的,但针对表观遗传学研究的此类招募策略的信息却很少。在本文中,我们分享了在4项针对经历一系列健康问题的不同背景女性的表观遗传学研究中,加强知情同意过程的策略经验,并提供了为提高潜在参与者对表观遗传学的理解而开发的材料样本。使用该过程的表观遗传学研究的综合招募成功率为89%,参与者代表了多样化的人群。我们认为,精心编写的招募脚本为提高潜在参与者对研究项目的理解奠定了基础。易于理解的表观遗传过程插图为积极参与提供了基础,并鼓励个人提问。

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本文引用的文献

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Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?基因组规模研究中的知情同意:潜在参与者怎么看?
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