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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

Journal Article · · Journal of Radiation Research
DOI:https://doi.org/10.1093/jrr/rrab043· OSTI ID:1816285
 [1];  [2];  [3];  [4];  [1];  [5];  [6];  [7];  [5];  [8];  [9]
  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)
+ Show Author Affiliations

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.

Research Organization:
Radiation Effects Research Foundation (RERF), Hiroshima (Japan)
Sponsoring Organization:
USDOE; Ministry of Education, Culture, Sports, Science and Technology (MEXT); National Human Genome Research Institute; National Center for Advancing Translational Sciences
Grant/Contract Number:
20 K12179; HG200388-07; HG004488; UL1 TR002319
OSTI ID:
1816285
Journal Information:
Journal of Radiation Research, Vol. 62, Issue 4; ISSN 0449-3060
Publisher:
Oxford University PressCopyright Statement
Country of Publication:
United States
Language:
English

References (12)

Genetic Effects of Radiation in Atomic-bomb Survivors and Their Children: Past, Present and Future journal January 2006
Should we worry about inherited radiation risks? journal October 2015
Japanese Legacy Cohorts: The Life Span Study Atomic Bomb Survivor Cohort and Survivors’ Offspring journal January 2018
Characterizing Participants in the ClinSeq Genome Sequencing Cohort as Early Adopters of a New Health Technology journal July 2015
ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing journal July 2013
Disclosure ofAPOEGenotype for Risk of Alzheimer's Disease journal July 2009
A proposal on the first Japanese practical guidance for the return of individual genomic results in research settings journal December 2019
Effective Engagement Requires Trust and Being Trustworthy journal October 2018
Reframing Consent for Clinical Research: A Function-Based Approach journal November 2017
The genome-wide effects of ionizing radiation on mutation induction in the mammalian germline journal March 2015
Characteristics of induced mutations in offspring derived from irradiated mouse spermatogonia and mature oocytes journal January 2020
Lack of transgenerational effects of ionizing radiation exposure from the Chernobyl accident journal April 2021

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Related Subjects

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