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. 2023 Jul;18(3):109-117.
doi: 10.1177/15562646231173745. Epub 2023 May 16.

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

Jyoti Angal  1   2 , Barbara Brockevelt  3 , S Jean Caraway  4 , DenYelle B Kenyon  2   3 , Katherine Ziegler  1   2 , Amy J Elliott  1   2
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Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample

Jyoti Angal et al. J Empir Res Hum Res Ethics. 2023 Jul.

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.

Keywords: and burdens of research/beneficence and non-maleficence; benefits; incidental findings/return of results; indigenous/aboriginal/native populations; risks; survey methods; women.

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Conflict of interest statement

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Relationship between perceived value by result type and standardization status.
See this image and copyright information in PMC

References

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    1. ECHO (Environmental Child Health Outcomes). (n.d.). https://www.nih.gov/research-training/environmental-influences-child-hea...

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