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DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results

Researchers and clinicians in environmental health and medicine increasingly show respect for participants and patients by involving them in decision-making. In this context, the return of personal results to study participants is becoming ethical best practice, and many participants now expect to s...

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Autores principales: Boronow, Katherine E., Susmann, Herbert P., Gajos, Krzysztof Z., Rudel, Ruthann A., Arnold, Kenneth C., Brown, Phil, Morello-Frosch, Rachel, Havas, Laurie, Brody, Julia Green
Formato: Online Artículo Texto
Lenguaje:English
Publicado: National Institute of Environmental Health Sciences 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5289917/
https://www.ncbi.nlm.nih.gov/pubmed/28145870
http://dx.doi.org/10.1289/EHP702
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author Boronow, Katherine E.
Susmann, Herbert P.
Gajos, Krzysztof Z.
Rudel, Ruthann A.
Arnold, Kenneth C.
Brown, Phil
Morello-Frosch, Rachel
Havas, Laurie
Brody, Julia Green
author_facet Boronow, Katherine E.
Susmann, Herbert P.
Gajos, Krzysztof Z.
Rudel, Ruthann A.
Arnold, Kenneth C.
Brown, Phil
Morello-Frosch, Rachel
Havas, Laurie
Brody, Julia Green
author_sort Boronow, Katherine E.
collection PubMed
description Researchers and clinicians in environmental health and medicine increasingly show respect for participants and patients by involving them in decision-making. In this context, the return of personal results to study participants is becoming ethical best practice, and many participants now expect to see their data. However, researchers often lack the time and expertise required for report-back, especially as studies measure greater numbers of analytes, including many without clear health guidelines. In this article, our goal is to demonstrate how a prototype digital method, the Digital Exposure Report-Back Interface (DERBI), can reduce practical barriers to high-quality report-back. DERBI uses decision rules to automate the production of personalized summaries of notable results and generates graphs of individual results with comparisons to the study group and benchmark populations. Reports discuss potential sources of chemical exposure, what is known and unknown about health effects, strategies for exposure reduction, and study-wide findings. Researcher tools promote discovery by drawing attention to patterns of high exposure and offer novel ways to increase participant engagement. DERBI reports have been field tested in two studies. Digital methods like DERBI reduce practical barriers to report-back thus enabling researchers to meet their ethical obligations and participants to get knowledge they can use to make informed choices.
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spelling pubmed-52899172017-02-06 DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results Boronow, Katherine E. Susmann, Herbert P. Gajos, Krzysztof Z. Rudel, Ruthann A. Arnold, Kenneth C. Brown, Phil Morello-Frosch, Rachel Havas, Laurie Brody, Julia Green Environ Health Perspect Brief Communication Researchers and clinicians in environmental health and medicine increasingly show respect for participants and patients by involving them in decision-making. In this context, the return of personal results to study participants is becoming ethical best practice, and many participants now expect to see their data. However, researchers often lack the time and expertise required for report-back, especially as studies measure greater numbers of analytes, including many without clear health guidelines. In this article, our goal is to demonstrate how a prototype digital method, the Digital Exposure Report-Back Interface (DERBI), can reduce practical barriers to high-quality report-back. DERBI uses decision rules to automate the production of personalized summaries of notable results and generates graphs of individual results with comparisons to the study group and benchmark populations. Reports discuss potential sources of chemical exposure, what is known and unknown about health effects, strategies for exposure reduction, and study-wide findings. Researcher tools promote discovery by drawing attention to patterns of high exposure and offer novel ways to increase participant engagement. DERBI reports have been field tested in two studies. Digital methods like DERBI reduce practical barriers to report-back thus enabling researchers to meet their ethical obligations and participants to get knowledge they can use to make informed choices. National Institute of Environmental Health Sciences 2017-02-01 2017-02 /pmc/articles/PMC5289917/ /pubmed/28145870 http://dx.doi.org/10.1289/EHP702 Text en http://creativecommons.org/publicdomain/mark/1.0/ Publication of EHP lies in the public domain and is therefore without copyright. All text from EHP may be reprinted freely. Use of materials published in EHP should be acknowledged (for example, “Reproduced with permission from Environmental Health Perspectives”); pertinent reference information should be provided for the article from which the material was reproduced. Articles from EHP, especially the News section, may contain photographs or illustrations copyrighted by other commercial organizations or individuals that may not be used without obtaining prior approval from the holder of the copyright.
spellingShingle Brief Communication
Boronow, Katherine E.
Susmann, Herbert P.
Gajos, Krzysztof Z.
Rudel, Ruthann A.
Arnold, Kenneth C.
Brown, Phil
Morello-Frosch, Rachel
Havas, Laurie
Brody, Julia Green
DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title_full DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title_fullStr DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title_full_unstemmed DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title_short DERBI: A Digital Method to Help Researchers Offer “Right-to-Know” Personal Exposure Results
title_sort derbi: a digital method to help researchers offer “right-to-know” personal exposure results
topic Brief Communication
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5289917/
https://www.ncbi.nlm.nih.gov/pubmed/28145870
http://dx.doi.org/10.1289/EHP702
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