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...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media
2017
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| Online Access: | http://eprints.usm.my/37221/1/%28Social_and_Communicative_Functions%29.pdf |
| _version_ | 1825833617964662784 |
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| 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 |
| collection | USM |
| 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. |
| first_indexed | 2024-03-06T15:10:31Z |
| format | Article |
| id | usm.eprints-37221 |
| institution | Universiti Sains Malaysia |
| language | English |
| last_indexed | 2024-03-06T15:10:31Z |
| publishDate | 2017 |
| publisher | Frontiers Media |
| record_format | dspace |
| spelling | usm.eprints-372212017-10-20T02:05:40Z 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 |
| 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 |
| title | 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_short | 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 |
| topic | R5-130.5 General works |
| url | http://eprints.usm.my/37221/1/%28Social_and_Communicative_Functions%29.pdf |
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