Ethical, legal and social implications of human genome studies in radiation research: a workshop report for studies on atomic bomb survivors at the Radiation Effects Research Foundation Article Swipe
Asao Noda
,
Yoshihiro Kato
,
Chieko Tamura
,
Leslie G. Biesecker
,
Misa Imaizumi
,
Yusuke Inoue
,
Gail E. Henderson
,
Benjamin S. Wilfond
,
Kaori Muto
,
Mariko Naito
,
Junji Kayukawa
·
YOU?
·
· 2021
· Open Access
·
· DOI: https://doi.org/10.1093/jrr/rrab043
YOU?
·
· 2021
· Open Access
·
· DOI: https://doi.org/10.1093/jrr/rrab043
The Radiation Effects Research Foundation (RERF) is the primary organization in Japan dedicated to studying the health consequences of the Hiroshima and Nagasaki atomic bombings in World War II. In December 2020, RERF held a virtual international workshop on the ethical, legal and social implications (ELSI) of genome studies. In this workshop, the ELSI considerations of future human genome studies on radiation research including atomic bomb survivors and their families were discussed. Since genome sequencing (GS) is now practical and affordable, RERF now plans GS of parents/child trios to examine genetic effects of atomic bomb radiation. As such studies may engender some novel risks and benefits, ethics review and engagement with families (including consent) need to be considered. These include protection of individual privacy, use of samples from deceased prior participants, return of results to the participants, public sharing of genome data and advance science and social welfare. Specifically with regard to social welfare, the results of such studies may have implications for public and government decision-making regarding social benefits of victims and other important questions. Based on these broad-ranging discussions we have developed the following concepts to guide this work: “trust,” “compromise” and “relationship building,” inclusive of the concerned stakeholders, scientific aims and Japanese society at large. We conclude that in order to realize, establish and maintain these concepts, it is essential to put procedures into place to ensure the successful, consensus-based implementation of the RERF studies.
Related Topics
Concepts
Metadata
- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1093/jrr/rrab043
- OA Status
- gold
- Cited By
- 5
- References
- 14
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W3164266390
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W3164266390Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1093/jrr/rrab043Digital Object Identifier
- Title
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Ethical, legal and social implications of human genome studies in radiation research: a workshop report for studies on atomic bomb survivors at the Radiation Effects Research FoundationWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2021Year of publication
- Publication date
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2021-05-10Full publication date if available
- Authors
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Asao Noda, Yoshihiro Kato, Chieko Tamura, Leslie G. Biesecker, Misa Imaizumi, Yusuke Inoue, Gail E. Henderson, Benjamin S. Wilfond, Kaori Muto, Mariko Naito, Junji KayukawaList of authors in order
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https://doi.org/10.1093/jrr/rrab043Publisher landing page
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YesWhether a free full text is available
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goldOpen access status per OpenAlex
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https://doi.org/10.1093/jrr/rrab043Direct OA link when available
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Compromise, Government (linguistics), Public relations, Engineering ethics, Political science, Bioethics, Law, Engineering, Linguistics, PhilosophyTop concepts (fields/topics) attached by OpenAlex
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5Total citation count in OpenAlex
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2025: 3, 2024: 1, 2023: 1Per-year citation counts (last 5 years)
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14Number of works referenced by this work
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10Other works algorithmically related by OpenAlex
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| citation_normalized_percentile.value | 0.52457308 |
| citation_normalized_percentile.is_in_top_1_percent | False |
| citation_normalized_percentile.is_in_top_10_percent | False |