Struck down but not swept away:
Moving forward while looking back at the 3.11 tsunami
Written by Jana Wiegand
Genetic sequencing is part of cutting edge research at the Tohoku Medical Megabank Organization aimed at rebuilding medical records lost to 3.11 disaster. Photo courtesy ToMMa.
The Great East Japan Earthquake and the triple disaster that followed sparked a new period of scientific research in Japan.
Scientists, driven by the desire to provide relief and information in the aftermath of the nuclear disaster, sketched out pragmatic responses to immediate needs. They also realized that their knowledge of natural disasters wasn’t good enough to prepare for and respond to such mega disasters and they started to reimagine research needs and global collaboration.
Three prominent projects that highlight this new form of scientific thought are the Tohoku Medical Megabank Organization (ToMMo), the International Research Institute of Disaster Science (IRIDeS) and Safecast. The people involved in each of these projects felt determined to learn from 3.11’s aftermath and make sure future generations didn’t suffer from the same knowledge gaps.
Building new medical records from the inside out
Masayuki Yamamoto, the then-dean of the Tohoku University School of Medicine, was taking a bullet train from Kyoto to Tokyo when the 3.11 earthquake struck. Tohoku University was only about 80 miles from the epicenter, and when Yamamoto realized how badly the local communities were damaged, he felt an obligation to do something that went beyond emergency relief efforts.
“We really felt a responsibility as medical scientists,” Yamamoto said. “We needed to think about the long-term support of the residents, and this was hundreds of thousands of people.”
Before 3.11, local medical records were still written on paper. The water and fires of the disaster destroyed tremendous volumes of records and underscored the importance of personal medical histories -- especially for people affected by radiation contamination.
Yamamoto and the other researchers at Tohoku University decided to rebuild the medical records as part of a new electronic database. Called a biobank, the new database would be made up of physical samples, such as blood or urine, that could then be used to analyze the DNA of individuals and their families.
With funding from the Japanese government, Tohoku University established the Tohoku Medical Megabank Organization (ToMMo) in 2012, and Yamamoto has since become the executive director. The project’s goal is nothing short of creating a genetic database to advance personalized healthcare for all of Japan.
“Based on the genome information and people’s treatment or diagnosis, based on individual differences and personalized medicine, our goal is to create personalized healthcare,” Yamamoto said. “And for that purpose, we need to complete the biobank with information from our own country.”
Yamamoto said the project also opened new job opportunities in the medical industry that helped support Tohoku after the disaster.
Across the world, personalized healthcare is at the cutting edge of a discipline that unites biology and medicine. It uses new technology to analyze genetic history, predict personal health risks and cater medical treatment to individuals.
As part of improving personalized healthcare, ToMMo is looking for trends in physical and mental illnesses in 3.11 victims. Three years after the tsunami, ToMMo researchers found the rates of depression were 25 percent higher in coastal communities than inland ones. Since then, Yamamoto has been trying to increase mental health resources in those areas.
ToMMo has two overarching study groups: an 80,000-person Community Cohort and a 70,000-person Three-Generation Cohort. These 150,000 people will serve as the foundation for ToMMo’s long-term goal to analyze and understand the Japanese genome.
Recruiting citizens to participate in the studies hasn’t been an easy process.
“If I am the doctor, and you come in as a patient with hypertension or diabetes or cancer, and I ask, why don’t you join our patient cohort, everybody says yes. But in this case, everybody’s healthy,” Yamamoto said.
He used the Japanese word otaku to describe people who are overly health conscious and might introduce a bias into the study. To make sure hypochondriacs don’t dominate the ToMMo database, research coordinators have been recruiting pregnant mothers and their families at OB/GYN appointments and other citizens at annual checkups.
“We are asking people to please participate in our project for the health of the future babies and for the health the future moms,” Yamamoto said.
While it’s too soon to unravel the generational secrets of the double helix, ToMMo plans to keep up to date with participants’ health and make sure the tsunami victims receive the personal healthcare they need to help recover from 3.11.
Yamamoto said the most important thing to remember is the fact that ToMMo is a public biobank. The intellectual property belongs to its users. ToMMo’s data is easily accessible for local physicians and other university researchers. Since ToMMo isn’t a for-profit institution, Yamamoto said everything the project does is for the good of the people.
A global effort to understand disaster
Most of the 20,000 people who died in Japan after the 3.11 disaster were killed by the tsunami. Although Japan’s losses were terrible, the 2004 Boxing Day tsunami in Sumatra, Indonesia, underscored the importance of preparation and emergency resources: That quake of similar intensity killed almost 230,000 people.
Scientists at Tohoku University realized after 3.11 that better access to findings, research and reports could save lives worldwide by sharing best practices for warnings and community preparation. One year after 3.11, Tohoku University founded IRIDeS, the International Research Institute of Disaster Science.
One of the first things IRIDeS had to do was repair the public confidence in science and produce science with immediate application.
Natsuko Chubachi, an assistant professor and public relations manager for IRIDeS, said
trust in the government, media and science all suffered following 3.11.
“People lost trust in the scientific community because different people were saying different things,” she said.
“We don’t want to do research just for research,” Chubachi said. “Our hope and determination is not to repeat the same disaster again, and put our scientific advantage over our experience.”
At IRIDeS, the research extends beyond Japan to other regions of the world prone to earthquakes, tsunamis and volcanic eruptions. The institute has started hosting an international conference in Sendai every other year, and IRIDeS scientists travel to workshops around the world.
Radiation is personal
When the world supply of Geiger counters sold out within 24 hours of the meltdown at the Fukushima Daiichi Power Plant, a group of citizen scientists decided to build their own mobile Geiger counters so that residents could monitor their individual exposures. The group became Safecast, a Tokyo-based environmental monitoring group.
The time was ripe for individuals to be making empirical observations about their own environment. Industry, government and media were all struggling to provide clear information about personal risk and the nuclear meltdown. However, Safecast still needed to prove to Japanese citizens that it was trustworthy.
“It took a while to get past the skepticism,” said Azby Brown, lead researcher of the Safecast operations team. “Part of it was that there was a lot of bad news, bad data, out there, especially in Fukushima. But once we could convince people that we weren’t doing that, gradually people accepted it.”
Despite the government’s tentative initial communications efforts, Brown said the Japanese government has done a better job of monitoring radiation and communicating the results to the public in the last few years.
He still feels Safecast’s nation-wide measurements are more thorough and more widespread than those being done by the Japanese government.
“You could argue, well, maybe there wasn’t so much fallout in the rest of the country,” Brown said. “But we still think they should be proactive about doing that. And they’re not. So our issue has always been about how much coverage, how frequently and how transparently it’s being done.”
Like the information collected by ToMMo, all of Safecast’s data and software are open-sourced and accessible online for anyone who wants to know more.
“But what I’m seeing is this general, gradual loss of interest on the part of the public, especially the public outside of Fukushima,” Brown said. “So it’s a question of political will to make sure the government continues in a very conscientious way.”
The impacts of the 3.11 triple disaster rattled Japan’s collective consciousness. The researchers and citizen scientists who became involved in new research hope their findings -- and their increased collaboration -- make the world better prepared for the next mega-disaster.
Creating and sustaining a culture where science is no longer a stranger comes with plenty of challenges, but the need is strong and the consequences are clear.
“Citizens need to care,” Brown said. “They need to be prepared to have their own alternatives in case the government isn’t as responsive as it needs to be. And the government needs to be. Because it’s in their best interest to do it.”