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Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities

BACKGROUND: In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal r...

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Detalles Bibliográficos
Autor principal: Fisher, Celia B.
Formato: Texto
Lenguaje:English
Publicado: National Institute of Environmental Health Sciences 2006
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1626422/
https://www.ncbi.nlm.nih.gov/pubmed/17035154
http://dx.doi.org/10.1289/ehp.9004
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author Fisher, Celia B.
author_facet Fisher, Celia B.
author_sort Fisher, Celia B.
collection PubMed
description BACKGROUND: In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary “research participant.” Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene–environment interactions. OBJECTIVES: In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. DISCUSSION: I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene–environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. CONCLUSIONS: The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders.
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spelling pubmed-16264222006-11-08 Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities Fisher, Celia B. Environ Health Perspect Research BACKGROUND: In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary “research participant.” Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene–environment interactions. OBJECTIVES: In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. DISCUSSION: I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene–environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. CONCLUSIONS: The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders. National Institute of Environmental Health Sciences 2006-10 2006-08-14 /pmc/articles/PMC1626422/ /pubmed/17035154 http://dx.doi.org/10.1289/ehp.9004 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 Research
Fisher, Celia B.
Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title_full Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title_fullStr Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title_full_unstemmed Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title_short Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities
title_sort privacy and ethics in pediatric environmental health research—part ii: protecting families and communities
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1626422/
https://www.ncbi.nlm.nih.gov/pubmed/17035154
http://dx.doi.org/10.1289/ehp.9004
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