Ethical challenges for the design and conduct of mega-biobanking from Great East Japan Earthquake victims
1 Office for Research Ethics & Bioethics, the National Cerebral and Cardiovascular Center, Fujishiro-dai 5-7-1, Suita, Osaka 565-8565, Japan
2 Office of Personal Information Protection, the National Cerebral and Cardiovascular Center Biobank, Fujishiro-dai 5-7-1, Suita, Osaka 565-8565, Japan
3 Office for Promoting Medical Research, Showa University, Hatano-dai 1-6-8, Shinagawa-ku, Tokyo 142-8555, Japan
BMC Medical Ethics 2014, 15:55 doi:10.1186/1472-6939-15-55Published: 4 July 2014
Amid continuing social unrest from the Great East Japan Earthquake and subsequent Fukushima nuclear accident of 2011, the Japanese government announced plans for a major biobanking project in the disaster-stricken areas, to be administered by the ‘Tohoku Medical Megabank Organization’ (ToMMo). This project differs from previous biobanking projects in that it 1) was initiated mainly to boost post-disaster recovery and reconstruction; and 2) targets the area’s survivors as its primary subjects. Here, we review the ethics of the ToMMo biobanking project within the wider context of disaster remediation.
Private citizens in the Tohoku region have criticized the project proposal, asking for further review of the ethics of targeting disaster survivors for this study. They claim the project violates the Declaration of Helsinki’s ethical provisions in that (1) government and university researchers initiated it without consulting any Tohoku survivors; (2) survivors already suffering extreme losses may view study involvement as meaningless or even undesirable, yet feel forced to participate in exchange for tenuous promises of future assistance, thus exploiting those most in need.
Although the ToMMo has promised certain future social benefits for the target population in exchange for participating in its biobanking research, it is questionable whether such research can address the immediate health needs of the Tohoku disaster survivors in any significant fashion. The ethics of recruiting still-struggling survivors is also questionable.
This case analysis demonstrates that conducting a post-disaster biobanking project on survivors poses issues concerning potential exploitation and the just distribution of benefits and burdens. Though the ToMMo emphasizes the project’s importance for individual survivors and regional recovery, it is questionable whether such research can justly respond to the survivors’ immediate health needs and whether truly voluntary participation can be ensured in such a crisis. Our society must enhance this nationwide debate and reexamine our priorities for recovery in the disaster-stricken regions. We should evaluate both whether and how this project can truly contribute to the survivors’ quality of life.