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Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers

When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair re...

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Detalles Bibliográficos
Autores principales: Snoek, Anke, Horstkötter, Dorothee
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6282773/
https://www.ncbi.nlm.nih.gov/pubmed/30226278
http://dx.doi.org/10.1111/bioe.12514
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author Snoek, Anke
Horstkötter, Dorothee
author_facet Snoek, Anke
Horstkötter, Dorothee
author_sort Snoek, Anke
collection PubMed
description When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair recruitment and risk/harm analysis. However, research also entails indirect harms that remain largely unnoticed by research ethical committees and the research community. Indirect harms do not occur during data collection, but in the analysis of the data, and how the data is presented to the scientific and wider societal community. Highly stigmatized research subjects, like substance‐dependent parents, are especially at risk of encountering indirect harm, because the prejudice against them is so persistent. In this paper we discuss two forms of indirect harm. First, researchers have to be aware how their results will be preceived by society. Even when subjects are presented in an objective way, further, out of porportion stigmatization can occur. Researchers sometimes try to counteract this by whitewashing their results, at the risk of downplaying their respondents’ problems. The second risk researchers face is that their own normative judgements influence how they question such parents, report results and interpret statements. Researchers’ own normative judgements may influence the way they present their subjects. This article reviews a broad range of research that exhibits such indirect harms, discussing how and why indirect harms occur and formulating corresponding recommendations on how to prevent them.
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spelling pubmed-62827732018-12-11 Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers Snoek, Anke Horstkötter, Dorothee Bioethics Original Articles When doing research among vulnerable populations, researchers are obliged to protect their subjects from harm. We will argue that traditional ethical guidelines are not sufficient to do this, since they mainly focus on direct harms that can occur: for example, issues around informed consent, fair recruitment and risk/harm analysis. However, research also entails indirect harms that remain largely unnoticed by research ethical committees and the research community. Indirect harms do not occur during data collection, but in the analysis of the data, and how the data is presented to the scientific and wider societal community. Highly stigmatized research subjects, like substance‐dependent parents, are especially at risk of encountering indirect harm, because the prejudice against them is so persistent. In this paper we discuss two forms of indirect harm. First, researchers have to be aware how their results will be preceived by society. Even when subjects are presented in an objective way, further, out of porportion stigmatization can occur. Researchers sometimes try to counteract this by whitewashing their results, at the risk of downplaying their respondents’ problems. The second risk researchers face is that their own normative judgements influence how they question such parents, report results and interpret statements. Researchers’ own normative judgements may influence the way they present their subjects. This article reviews a broad range of research that exhibits such indirect harms, discussing how and why indirect harms occur and formulating corresponding recommendations on how to prevent them. John Wiley and Sons Inc. 2018-09-18 2018-11 /pmc/articles/PMC6282773/ /pubmed/30226278 http://dx.doi.org/10.1111/bioe.12514 Text en © 2018 The Authors. Transactions in GIS published by John Wiley & Sons Ltd. This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Articles
Snoek, Anke
Horstkötter, Dorothee
Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title_full Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title_fullStr Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title_full_unstemmed Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title_short Ethical issues in research on substance‐dependent parents: The risk of implicit normative judgements by researchers
title_sort ethical issues in research on substance‐dependent parents: the risk of implicit normative judgements by researchers
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6282773/
https://www.ncbi.nlm.nih.gov/pubmed/30226278
http://dx.doi.org/10.1111/bioe.12514
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