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
Abstract
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.
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