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Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond

The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in g...

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Main Authors:	Go, Yoshizawa, Sasongko, Teguh H., Ho, Chih Hsing, Kato, Kazuto
Format:	Article
Language:	English
Published:	Frontiers Media 2017
Subjects:	R5-130.5 General works
Online Access:	http://eprints.usm.my/37221/1/%28Social_and_Communicative_Functions%29.pdf http://eprints.usm.my/37221/ https://doi.org/10.3389/fgene.2017.00099
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id	my.usm.eprints.37221
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spelling	my.usm.eprints.37221 http://eprints.usm.my/37221/ Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond Go, Yoshizawa Sasongko, Teguh H. Ho, Chih Hsing Kato, Kazuto R5-130.5 General works The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases. Frontiers Media 2017-07 Article PeerReviewed application/pdf en http://eprints.usm.my/37221/1/%28Social_and_Communicative_Functions%29.pdf Go, Yoshizawa and Sasongko, Teguh H. and Ho, Chih Hsing and Kato, Kazuto (2017) Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond. Frontiers in Genetics , 8 (99). pp. 1-12. ISSN 1664-8021 https://doi.org/10.3389/fgene.2017.00099
institution	Universiti Sains Malaysia
building	Hamzah Sendut Library
collection	Institutional Repository
continent	Asia
country	Malaysia
content_provider	Universiti Sains Malaysia
content_source	USM Institutional Repository
url_provider	http://eprints.usm.my/
language	English
topic	R5-130.5 General works
spellingShingle	R5-130.5 General works Go, Yoshizawa Sasongko, Teguh H. Ho, Chih Hsing Kato, Kazuto Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
description	The recent research and technology development in medical genomics has raised new issues that are profoundly different from those encountered in traditional clinical research for which informed consent was developed. Global initiatives for international collaboration and public participation in genomics research now face an increasing demand for new forms of informed consent which reflect local contexts. This article analyzes informed consent forms (ICFs) for genomic research formulated by four selected research programs and institutes in East Asia – the Medical Genome Science Program in Japan, Universiti Sains Malaysia Human Research Ethics Committee in Malaysia, and the Taiwan Biobank and the Taipei Medical University- Joint Institutional Review Board in Taiwan. The comparative text analysis highlights East Asian contexts as distinct from other regions by identifying communicative and social functions of consent forms. The communicative functions include re-contact options and offering interactive support for research participants, and setting opportunities for family or community engagement in the consent process. This implies that informed consent cannot be validated solely with the completion of a consent form at the initial stage of the research, and informed consent templates can facilitate interactions between researchers and participants through (even before and after) the research process. The social functions consist of informing participants of possible social risks that include genetic discrimination, sample and data sharing, and highlighting the role of ethics committees. Although international ethics harmonization and the subsequent coordination of consent forms may be necessary to maintain the quality and consistency of consent process for data-intensive international research, it is also worth paying more attention to the local values and different settings that exist where research participants are situated for research in medical genomics. More than simply tools to gain consent from research participants, ICFs function rather as a device of social communication between research communities and civic communities in liaison with intermediary agents like ethics committees, genetic counselors, and public biobanks and databases.
format	Article
author	Go, Yoshizawa Sasongko, Teguh H. Ho, Chih Hsing Kato, Kazuto
author_facet	Go, Yoshizawa Sasongko, Teguh H. Ho, Chih Hsing Kato, Kazuto
author_sort	Go, Yoshizawa
title	Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
title_short	Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
title_full	Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
title_fullStr	Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
title_full_unstemmed	Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond
title_sort	social and communicative functions of informed consent forms in east asia and beyond
publisher	Frontiers Media
publishDate	2017
url	http://eprints.usm.my/37221/1/%28Social_and_Communicative_Functions%29.pdf http://eprints.usm.my/37221/ https://doi.org/10.3389/fgene.2017.00099
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score	13.211869

Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond

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