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Title: 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

Abstract

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 concernedmore » 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.« less

Authors:
 [1];  [2];  [3];  [4];  [1];  [5];  [6];  [7];  [5];  [8];  [9]
+ Show Author Affiliations
  1. Radiation Effects Research Foundation (RERF), Hiroshima (Japan)
  2. Osaka Univ. (Japan)
  3. FMC Tokyo Clinic (Japan)
  4. National Human Genome Research Institute, Bethesda, MD (United States)
  5. Univ. of Tokyo (Japan)
  6. Univ. of North Carolina, Chapel Hill, NC (United States). School of Medicine
  7. Univ. of Washington, Seattle, WA (United States). Seattle Children's Hospital and Research Institute
  8. Hiroshima Univ. (Japan)
  9. Elkei University of Hiroshima (Japan)
Publication Date:
Research Org.:
Radiation Effects Research Foundation (RERF), Hiroshima (Japan)
Sponsoring Org.:
USDOE; Ministry of Education, Culture, Sports, Science and Technology (MEXT); National Human Genome Research Institute; National Center for Advancing Translational Sciences
OSTI Identifier:
1816285
Grant/Contract Number:  
20 K12179; HG200388-07; HG004488; UL1 TR002319
Resource Type:
Accepted Manuscript
Journal Name:
Journal of Radiation Research
Additional Journal Information:
Journal Volume: 62; Journal Issue: 4; Journal ID: ISSN 0449-3060
Publisher:
Oxford University Press
Country of Publication:
United States
Language:
English
Subject:
63 RADIATION, THERMAL, AND OTHER ENVIRON. POLLUTANT EFFECTS ON LIVING ORGS. AND BIOL. MAT.; genome study ethical, legal and social implications (ELSI); human biosamples; genome sequencing (GS); atomic bomb survivors; informed consent; community engagement

Citation Formats

Noda, Asao, Kato, Kazuto, Tamura, Chieko, Biesecker, Leslie G., Imaizumi, Misa, Inoue, Yusuke, Henderson, Gail E., Wilfond, Benjamin, Muto, Kaori, Naito, Mariko, and Kayukawa, Junji. 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. United States: N. p., 2021. Web. doi:10.1093/jrr/rrab043.
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Noda, Asao, Kato, Kazuto, Tamura, Chieko, Biesecker, Leslie G., Imaizumi, Misa, Inoue, Yusuke, Henderson, Gail E., Wilfond, Benjamin, Muto, Kaori, Naito, Mariko, & Kayukawa, Junji. 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. United States. https://doi.org/10.1093/jrr/rrab043
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Noda, Asao, Kato, Kazuto, Tamura, Chieko, Biesecker, Leslie G., Imaizumi, Misa, Inoue, Yusuke, Henderson, Gail E., Wilfond, Benjamin, Muto, Kaori, Naito, Mariko, and Kayukawa, Junji. Mon . "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". United States. https://doi.org/10.1093/jrr/rrab043. https://www.osti.gov/servlets/purl/1816285.
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@article{osti_1816285,
title = {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},
author = {Noda, Asao and Kato, Kazuto and Tamura, Chieko and Biesecker, Leslie G. and Imaizumi, Misa and Inoue, Yusuke and Henderson, Gail E. and Wilfond, Benjamin and Muto, Kaori and Naito, Mariko and Kayukawa, Junji},
abstractNote = {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.},
doi = {10.1093/jrr/rrab043},
journal = {Journal of Radiation Research},
number = 4,
volume = 62,
place = {United States},
year = {Mon May 31 00:00:00 EDT 2021},
month = {Mon May 31 00:00:00 EDT 2021}
}
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Publisher's Version of Record
https://doi.org/10.1093/jrr/rrab043
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