Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample-Reference-Cited by-同舟云学术

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

Published:2023-05-16 Issue:3 Volume:18 Page:109-117
ISSN:1556-2646
Container-title:Journal of Empirical Research on Human Research Ethics
language:en
Short-container-title:Journal of Empirical Research on Human Research Ethics

Author:

Angal Jyoti¹²^ORCID,Brockevelt Barbara³,Caraway S. Jean⁴,Kenyon DenYelle B.²³,Ziegler Katherine¹²,Elliott Amy J.¹²

Affiliation:

1. Avera Research Institute, Sioux Falls, SD, USA

2. Department of Pediatrics, University of South Dakota School of Medicine, Sioux Falls, SD, USA

3. School of Health Sciences, The University of South Dakota, Vermillion, SD, USA

4. College of Arts and Sciences, The University of South Dakota, Vermillion, SD

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.

Funder

NIH Office of the Director

Publisher

SAGE Publications

Subject

Communication,Education,Social Psychology

Link

http://journals.sagepub.com/doi/pdf/10.1177/15562646231173745

Reference24 articles.

1. All of Us. (2022). All of Us Research Program. https://allofus.nih.gov/

2. The NIH ECHO Program: investigating how early environmental influences affect child health

3. Public preferences for the return of research results in genetic research: a conjoint analysis

4. CDC (Centers for Disease Control). (2020). https://www.cdc.gov/healthyweight/assessing/bmi/adult_bmi/index.html

5. ECHO (Environmental Child Health Outcomes). (n.d.). https://www.nih.gov/research-training/environmental-influences-child-health-outcomes-echo-program