External stakeholder committee on use of stored biosamples in genomic research gives advice to RERF: Exclude military research, obtain A-bomb survivors’ consent
Oct. 29, 2020
by Junji Akechi, Staff Writer
An external stakeholder committee of the Radiation Effects Research Foundation (RERF), located in Hiroshima’s Minami Ward, has compiled advice about the use in RERF’s research of stored biosamples such as A-bomb survivors’ blood and other samples. Taking into consideration genome analysis and other leading-edge technologies, the advice called on RERF to carefully handle the issue. For example, it advised RERF to exclude any military research and obtain survivor approval before embarking on such studies, among other suggestions. The advice was conveyed to RERF in a formal ceremony held in Hiroshima’s Naka Ward on October 28.
To investigate the effects of radiation on human health, RERF has long collected blood, urine, and other samples from A-bomb survivors, with about 1.9 million specimens, as well as pathological specimens, kept in storage. Using genome analysis and other leading-edge technologies, it is anticipated that such research will contribute to the understanding of mechanisms underlying diseases caused by radiation.
While considering technological progress such as genome analysis, as well as the current situation in which international collaborative research projects are becoming more common, the external stakeholder committee carried out deliberations about how to conduct research and obtain survivors’ consent, as well as about issues involving ethics surrounding such research.
The committee’s seven suggestions included the concepts of building relationships of trust with the survivors who cooperate in research; excluding military research; writing up a charter and RERF’s own guidelines for the handling of samples donated by survivors; providing thorough explanations when survivor approval is obtained for their cooperation in research; and reducing the burden on participants in RERF’s research.
The committee also suggested that more discussions be held on how to handle samples from survivors who have already died. As for the members of an ethical review board when appropriate studies are launched, the stakeholder committee suggested that consideration be given to ensure that the body can obtain the trust of A-bomb survivors and the public.
Koichi Maekawa, chairman of the stakeholder committee and former president of the Hiroshima University of Economics, handed the advice document to Ohtsura Niwa, chairman of RERF, at the ceremony. At the same time, a ceremony was held at Nagasaki RERF, with an online teleconferencing system connecting the two venues.
“There are many A-bomb survivors behind these committee members. I hope you respect our opinions when carrying out your research,” said Mr. Maekawa. Dr. Niwa replied, “Molecular level analyses are essential in life sciences in the 21st century. We hope to carry out such research while paying careful attention to humanitarian considerations based on your advice.”
The external stakeholder committee was established in Hiroshima in May 2018 and in Nagasaki in August the same year. The committee is composed of external researchers, A-bomb survivors, and legal experts. The committee has to date had four closed-door meetings in Hiroshima and three in Nagasaki.
by Junji Akechi, Staff Writer
Rapid progress in life sciences research as well as criticisms leveled at the foundation in the past for placing priority on research over providing medical treatment to A-bomb survivors, the Radiation Effects Research Foundation (RERF) established an external stakeholder committee and sought advice from its members.
RERF has long conducted research that covers large groups of people, including a life span study of 120,000 people designed to determine mortality rates and cancer incidences. Making use of the latest technologies such as genome analysis, the research institute has the potential to carry out studies that elucidate pathogenic mechanisms at an individual level. One important issue in carrying out such work is the management of personal information.
Genome information is regarded as the ultimate in personal information. Studies that involve the latest technologies conducted in collaboration with overseas research organizations are not rare. Crucial in such cases are the provision of explanations about the research to A-bomb survivors, the obtaining of their consent, and the careful management of their information.
The history of its predecessor organization casts a shadow over RERF. The Atomic Bomb Casualty Commission (ABCC), founded in 1947, mainly worked for military purposes in its beginning and was criticized by A-bomb survivors for examining them without providing treatment. Koichi Maekawa, chairman of the external stakeholder committee, said, “A-bomb survivors felt humiliated and frightened when they were examined in those days. Some people even today say they cannot completely trust RERF.”
Concerns about military research are deeply rooted. Shigeru Katamine, chairman of the Nagasaki external stakeholder committee, said, “It is not easy to draw a line [about whether a study can be diverted for military use], but if RERF can make an appeal to the world that its studies are designed for peaceful purposes, that can work as a brake on any move in that direction.”
The advice made by the stakeholder committee refers to the significance of utilizing the specimens in the most recent research. Such use can greatly contribute to the health and welfare of humanity. Ohtsura Niwa, chairman of RERF, said, “We must not forget the humanitarian issues surrounding ABCC. RERF’s role is to conduct research for peaceful purposes and will aim to conduct scientific studies imbued with humanity in the 21st century.
Main points of advice provided from the external stakeholder committee to RERF:
◆ Establishment of relationships based on trust with A-bomb survivors who cooperate in research.
◆ Expansion of public relations aimed at A-bomb survivors and citizens to gain their understanding of RERF’s research.
◆ Exclusion of military research when conducting collaborative research with overseas organizations.
◆ Formulation of a charter and guidelines for handling samples donated by survivors.
◆ Provision of thorough explanations when obtaining survivors’ agreement for their cooperation in research; reduction of the burden for those cooperating in research.
◆ Careful handling of genome analysis results.
◆ Research that meets the expectations of A-bomb survivors, who seek peace.
(Originally published on October 29, 2020)
An external stakeholder committee of the Radiation Effects Research Foundation (RERF), located in Hiroshima’s Minami Ward, has compiled advice about the use in RERF’s research of stored biosamples such as A-bomb survivors’ blood and other samples. Taking into consideration genome analysis and other leading-edge technologies, the advice called on RERF to carefully handle the issue. For example, it advised RERF to exclude any military research and obtain survivor approval before embarking on such studies, among other suggestions. The advice was conveyed to RERF in a formal ceremony held in Hiroshima’s Naka Ward on October 28.
To investigate the effects of radiation on human health, RERF has long collected blood, urine, and other samples from A-bomb survivors, with about 1.9 million specimens, as well as pathological specimens, kept in storage. Using genome analysis and other leading-edge technologies, it is anticipated that such research will contribute to the understanding of mechanisms underlying diseases caused by radiation.
While considering technological progress such as genome analysis, as well as the current situation in which international collaborative research projects are becoming more common, the external stakeholder committee carried out deliberations about how to conduct research and obtain survivors’ consent, as well as about issues involving ethics surrounding such research.
The committee’s seven suggestions included the concepts of building relationships of trust with the survivors who cooperate in research; excluding military research; writing up a charter and RERF’s own guidelines for the handling of samples donated by survivors; providing thorough explanations when survivor approval is obtained for their cooperation in research; and reducing the burden on participants in RERF’s research.
The committee also suggested that more discussions be held on how to handle samples from survivors who have already died. As for the members of an ethical review board when appropriate studies are launched, the stakeholder committee suggested that consideration be given to ensure that the body can obtain the trust of A-bomb survivors and the public.
Koichi Maekawa, chairman of the stakeholder committee and former president of the Hiroshima University of Economics, handed the advice document to Ohtsura Niwa, chairman of RERF, at the ceremony. At the same time, a ceremony was held at Nagasaki RERF, with an online teleconferencing system connecting the two venues.
“There are many A-bomb survivors behind these committee members. I hope you respect our opinions when carrying out your research,” said Mr. Maekawa. Dr. Niwa replied, “Molecular level analyses are essential in life sciences in the 21st century. We hope to carry out such research while paying careful attention to humanitarian considerations based on your advice.”
The external stakeholder committee was established in Hiroshima in May 2018 and in Nagasaki in August the same year. The committee is composed of external researchers, A-bomb survivors, and legal experts. The committee has to date had four closed-door meetings in Hiroshima and three in Nagasaki.
Against backdrop of negative legacy, thorough information management
by Junji Akechi, Staff Writer
Rapid progress in life sciences research as well as criticisms leveled at the foundation in the past for placing priority on research over providing medical treatment to A-bomb survivors, the Radiation Effects Research Foundation (RERF) established an external stakeholder committee and sought advice from its members.
RERF has long conducted research that covers large groups of people, including a life span study of 120,000 people designed to determine mortality rates and cancer incidences. Making use of the latest technologies such as genome analysis, the research institute has the potential to carry out studies that elucidate pathogenic mechanisms at an individual level. One important issue in carrying out such work is the management of personal information.
Genome information is regarded as the ultimate in personal information. Studies that involve the latest technologies conducted in collaboration with overseas research organizations are not rare. Crucial in such cases are the provision of explanations about the research to A-bomb survivors, the obtaining of their consent, and the careful management of their information.
The history of its predecessor organization casts a shadow over RERF. The Atomic Bomb Casualty Commission (ABCC), founded in 1947, mainly worked for military purposes in its beginning and was criticized by A-bomb survivors for examining them without providing treatment. Koichi Maekawa, chairman of the external stakeholder committee, said, “A-bomb survivors felt humiliated and frightened when they were examined in those days. Some people even today say they cannot completely trust RERF.”
Concerns about military research are deeply rooted. Shigeru Katamine, chairman of the Nagasaki external stakeholder committee, said, “It is not easy to draw a line [about whether a study can be diverted for military use], but if RERF can make an appeal to the world that its studies are designed for peaceful purposes, that can work as a brake on any move in that direction.”
The advice made by the stakeholder committee refers to the significance of utilizing the specimens in the most recent research. Such use can greatly contribute to the health and welfare of humanity. Ohtsura Niwa, chairman of RERF, said, “We must not forget the humanitarian issues surrounding ABCC. RERF’s role is to conduct research for peaceful purposes and will aim to conduct scientific studies imbued with humanity in the 21st century.
Main points of advice provided from the external stakeholder committee to RERF:
◆ Establishment of relationships based on trust with A-bomb survivors who cooperate in research.
◆ Expansion of public relations aimed at A-bomb survivors and citizens to gain their understanding of RERF’s research.
◆ Exclusion of military research when conducting collaborative research with overseas organizations.
◆ Formulation of a charter and guidelines for handling samples donated by survivors.
◆ Provision of thorough explanations when obtaining survivors’ agreement for their cooperation in research; reduction of the burden for those cooperating in research.
◆ Careful handling of genome analysis results.
◆ Research that meets the expectations of A-bomb survivors, who seek peace.
(Originally published on October 29, 2020)
