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

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

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

Get full access to this article

View all access options for this article.

References

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

Blaisdell, C. J., Park, C., Hanspal, M. et al. (2022). The NIH ECHO Program: investigating how early environmental influences affect child health. Pediatric Research, 92, 1215-1216. https://doi.org/10.1038/s41390-021-01574-8

Bollinger

J. M.

Bridges

J. F.

Mohamed

Kaufman

(2014). Public preferences for the return of research results in genetic research: A conjoint analysis. Genetics in Medicine : Official Journal of the American College of Medical Genetics, 16(12), 932‐939. https://doi.org/10.1038/gim.2014.50

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

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

Environmental Protection Agency (EPA). (November 2, 2022). Indoor particulate matter. https://www.epa.gov/indoor-air-quality-iaq/indoor-particulate-matter

Garrison, N. A., Barton, K. S., Porter, K. M., Mai, T., Burke, W., & Carroll, S. R. (2019). Access and Management: Indigenous Perspectives on Genomic Data Sharing. Ethnicity & Disease, 29(Suppl 3), 659-668. https://doi.org/10.18865/ed.29.S3.659

Gillman

M. W.

Blaisdell

C. J.

(2018). Environmental influences on child health outcomes, a research program of the national institutes of health. Current Opinion in Pediatrics, 30(2), 260‐262. https://doi.org/10.1097/MOP.0000000000000600

Harding

Harper

Stone

, et al. (2012). Conducting research with tribal communities: Sovereignty, ethics, and data-sharing issues. Environmental Health Perspectives, 120(1), 6‐10. https://doi.org/10.1289/ehp.1103904

10.

Harris

P. A.

Taylor

Thielke

Payne

Gonzalez

Conde

J. G.

(2009). Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377‐381. https://doi.org/10.1016/j.jbi.2008.08.010

11.

HBCD (Health Brain Child Development). (2022). https://heal.nih.gov/research/infants-and-children/healthy-brain

12.

Hiratsuka

V. Y.

Beans

J. A.

Blanchard

J. W.

Reedy

Blacksher

Lund

J. R.

Spicer

P. G.

(2020). An Alaska native community’s views on genetic research, testing, and return of results: Results from a public deliberation. PLoS ONE, 15(3), e0229540. https://doi.org/10.1371/journal.pone.0229540

13.

Hiratsuka

V. Y.

Beans

J. A.

Dirks

L. G.

Avey

J. P.

Caindec

Dillard

D. A.

(2018). Alaska Native health research forum: Perspectives on disseminating research findings. American Indian and Alaska Native Mental Health Research (Online), 25(1), 30‐41. https://doi.org/10.5820/aian.2501.2018.30

14.

Lewis

K. L.

Turbitt

Chan

P. A.

Epps

Biesecker

B. B.

Erby

L. A. H.

Fasaye

G. A.

Biesecker

L. G.

(2021). Engagement and return of results preferences among a primarily African American genomic sequencing research cohort. The American Journal of Human Genetics, 108(5), 894‐902. https://doi.org/10.1016/j.ajhg.2021.04.002

15.

MRCT (Multi-Regional Clinical Trials). (2022). https://mrctcenter.org/return-of-individual-results/

16.

Murphy

Scott

Kaufman

Geller

LeRoy

Hudson

(2008). Public expectations for return of results from large-cohort genetic research. The American Journal of Bioethics : AJOB, 8(11), 36‐43. https://doi.org/10.1080/15265160802513093

17.

NASEM. National Academies of Sciences, Engineering, and Medicine. (2018). Returning individual research results to participants: Guidance for a new research paradigm. The National Academies Press. https://doi.org/10.17226/25094

18.

Pinto

M. B.

Pinto

J. K.

(2019). The use of scenarios in survey research: A creative mixed-method approach to address sensitive topics in the workplace. In SAGE Research Methods Cases Part 2. Sage Publications, Ltd.. https://doi.org/10.4135/9781526478092

19.

Portacolome

Palmer

N. R.

Lichtenberg

Waters

C. M.

Hill

C. V.

Keiser

Vest

Maloof

Tran

Martinez

Guerrero

Johnson

J. K.

(2020). Earning the trust of African American communities to increase representation in dementia research. Ethnicity & Disease, 30(Suppl 2), 719‐734. https://doi.org/10.18865/ed.30.S2.719

20.

Sabatello

Zhang

Chen

Appelbaum

P. S.

(2020). In different voices: The views of people with disabilities about return of results from precision medicine research. Public Health Genomics, 23(1-2), 42‐53. https://doi.org/10.1159/000506599

21.

Sayeed

Califf

Green

Wong

Mahaffey

Gambhir

S. S.

Mega

Patrick-Lake

Frazier

Pignone

Hernandez

Shah

S. H.

Fan

A. C.

Krüg

Shaack

Shore

Spielman

Eckstrand

Wong

C. A.

, & Project Baseline Health Study Research Group (2021). Return of individual research results: What do participants prefer and expect? PloS one, 16(7), e0254153. https://doi.org/10.1371/journal.pone.0254153

22.

Sobel

M. E.

Dreyfus

J. C.

Dillehay McKillip

Kolarcik

Muller

W. A.

Scott

M. J.

Siegal

G. P.

Wadosky

O’Leary

T. J.

(2020). Return of individual research results: A guide for biomedical researchers utilizing human biospecimens. The American Journal of Pathology, 190(5), 918‐933. https://doi.org/10.1016/j.ajpath.2020.01.014

23.

Wilkins, C. H., Mapes, B. M., Jerome, R. N., Villalta-Gil, V., Pulley, J. M., & Harris, P. A. (2019). Understanding what information Is valued by research participants, and why. Health Aff (Millwood), 38(3), 399-407. https://doi.org/10.1377/hlthaff.2018.05046

24.

M.-J.

Zhao

Fils-Aime

(2022). Response rates of online surveys in published research: A meta-analysis. Computers in Human Behavior Reports, 7, 100206. https://doi.org/10.1016/j.chbr.2022.100206

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.05 MB