Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.

IF 1.7 4区 哲学 Q2 ETHICS Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 Epub Date: 2023-05-16 DOI:10.1177/15562646231173745
Jyoti Angal, Barbara Brockevelt, S Jean Caraway, DenYelle B Kenyon, Katherine Ziegler, Amy J Elliott
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Abstract

The last decade has witnessed growing calls for the return of individual research results. Prior work in genetic studies has shown that individual, contextual, and cultural factors influence participants' preferences for individual research results. There is a gap in knowledge about participants' views about other types of results, specifically those lacking clinical significance. This study investigates the perspectives of 1587 mothers enrolled in the Northern Plains Environmental Influences on Child Health Outcomes (ECHO) Program. Participants were presented with hypothetical scenarios to determine their perceived value of individual research results based on result type and the ability to interpret them within a normative context. Irrespective of the result type, participants attributed higher perceived value to results that were well understood than results of unknown significance.

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个人研究成果的回报:以社区为基础的纵向样本中的参与者视角。
近十年来,要求归还个人研究成果的呼声日益高涨。之前的基因研究工作表明,个人、环境和文化因素会影响参与者对个人研究成果的偏好。对于参与者对其他类型结果的看法,尤其是对那些缺乏临床意义的结果的看法,我们还缺乏了解。本研究调查了参加北部平原环境影响儿童健康结果(ECHO)项目的 1587 位母亲的观点。研究人员向参与者展示了一些假设情景,以确定她们对基于结果类型的单个研究结果的感知价值以及在规范背景下解释这些结果的能力。无论研究结果的类型如何,参与者都认为理解透彻的研究结果比意义不明的研究结果具有更高的感知价值。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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