Direct-to-consumer Ikigami Genetics
This is episode 15 of The French Tech Comedy, by DNA cowgirl.
Episode 1: The Science of Sakura
Episode 2: Lost in Telomere Translation
Episode 3: Feel Flee to Donate
Episode 4: Pasteurising Tech With the French Touch
Episode 5: The Newborn Symphony Project
Episode 6: The Unknown 9% of the Human Genome
Episode 7: The Apple Tech Specs Conference
Episode 8: religA.I.on
Episode 9: Hiroshima is Japan’s World Trade Center
Episode 10: Mao’s Robots
Episode 11: Zazen in the Shinkansen
Episode 12: The Last (French) Samurai
Episode 13: To Humanity and Beyond
Episode 14: The Music of Genomic Origami
Ikigami — Advance Notice of Death
“A national prosperity law has been passed in a dystopian nation resulting in citizens between the ages of 18–24 being randomly selected to die for the good of the nation. These citizens are given 24-hour notification of their impending death. These notifications are known as “ikigami” — the ostensible reason for this system being to help demonstrate the value of life.”
“Japan instituted a law for its citizens to re-learn the meaning of life: National Prosperity Law. When they enter primary school, all students are vaccinated, but if many of these vaccines are only placebos, one student in a thousand will receive a fatal injection that will trigger his death between 18 and 24 years. Thus, all children discover the importance of life and must therefore abide by the law. An official comes to bring the unlucky ones, 24 hours before
their death, an Ikigami, a death notice, indicating the exact day and time of their death.”
Yuki, a Japanese geisha who is in love with Nono, a French engineer working with her brother, a bioinformatician and oncologist in Tokyo, is trying to write about her feelings regarding direct to consumer genetics testing. When she saw that we can determine if somebody (or their relatives) will get Huntington’s disease thanks to genetic testing but there is absolutely no cure — at least not now — she immediately thought of a famous manga: Ikigami.
“Huntington’s disease is caused by an inherited defect in a single gene. Huntington’s disease is an autosomal dominant disorder, which means that a person needs only one copy of the defective gene to develop the disorder.”
“In first grade, all students receive an inoculation. A small percentage of these inoculations includes a nano capsule which via radio-control will kill the receiver somewhere between the ages of 18–24. The government believes that the threat of unexpected death will increase prosperity and productivity in its citizens. And indeed this increased prosperity is evident, but at a great cost: innocent lives. Citizens who do not agree with the National prosperity law and who publicly voice their opinions are accused of ‘thought crime.’”
“ — Would you like to know if you will get Huntington’s disease? We have developed a genetic test and it is 100% accurate.”
“A parent with a defective gene could pass along the defective copy of the gene or the healthy copy. Each child in the family, therefore, has a 50 percent chance of inheriting the gene that causes the genetic disorder.”
Yuki continued trawling the web:
“After the start of Huntington’s disease, a person’s functional abilities gradually worsen over time. The rate of disease progression and duration varies. The time from disease emergence to death is often about 10 to 30 years. Juvenile Huntington’s disease usually results in death within 10 years after symptoms develop.
The clinical depression associated with Huntington’s disease may increase the risk of suicide. Some research suggests that the greater risk of suicide occurs before a diagnosis is made and in the middle stages of the disease when a person has begun to lose independence.
Eventually, a person with Huntington’s disease requires help with all activities of daily living and care. Late in the disease, he or she will likely be confined to a bed and unable to speak. However, he or she is generally able to understand language and has an awareness of family and friends.”
The Japanese geisha thought about Nono and she was close to tears. Nono’s father had four brothers and a sister. All four brothers had died before the age of 48. The cause: Brugada Syndrome. A genetic disorder of the heart rhythm that can cause ventricular fibrillation and sudden cardiac arrest. Nono’s father had seen a cardiologist last summer. He was asymptomatic — as well as his sister — and taking great care of his health. The optimistic, nice, charming kind of person you always wished you could have around. Yuki admired him a lot. She had read about the existing therapies, to little avail. She wasn’t sure what “Treatment of Electrical Storm with Amiodarone in Brugada Syndrome” meant, she would have to ask Taka. Her mom had warned her. What if Nono also had this Brugada condition? Would she like to have kids with someone suffering from a severe genetic condition? She’d been consulting a doctor, a geneticist, who told her people were stupid because they didn’t want to know if they were at risk for Huntington’s disease.
“ — Yes…” She had agreed with the doctor. This head-in-the-sand attitude was indeed stupid. But on second thought, she felt otherwise. Actually, the one choosing the policy of the ostrich was the doctor. Who would like to know he or she would get this fatal disease with the highest possible degree of certainty, with absolutely zero cure existing? IKIGAMI. Advance notice of death.
“Kengo Fujimoto (Shota Matsuda) has been recruited by the government as an Ikigami delivery man. Whilst undergoing training he witnesses the “arrest” of a man (also undergoing training to become a deliverer) who commits a thought-crime when he yells to the entire room that the law is wrong and that his older sister died from the ikigami. The film follows Kengo as he delivers Ikigami to three citizens: a rising musician debuting in the music industry but struggling with leaving his friend behind as a busker, a shut-in who is the son of a council woman who supports the law whole-heartedly and attempts to use her son’s upcoming death to gain sympathy votes, and a working-class debt collector who is about to take his blind sister out of the orphanage she lives in now that he is finally financially secure.”
In the light of the recent Fukushima nuclear accident, Ikigami served to feed debates. Building nuclear power plants in areas that are at high risk of earthquake, sending temping personnel to do the maintenance in the most dangerous areas of the plant, where the risks of radiation-related occupational accidents are higher, and “the Battle of Fukushima” — to prevent the core meltdown accident. Explaining to the “heroes” that the whole nation is waiting for their sacrifice, as it is impossible to evacuate 35 million of inhabitants. Tokyo, the most inhabited city in the world. Nuclear power plants are only one avatar of the National Prosperity Law. Nuclear Prosperity Law.
Ikigami was named after the Akagami: the Red Notice, the nickname given to the official conscription letter during the Second World War. Receiving this letter meant you were being drafted into the army. 300 workers in Fukushima.
Mr. Fujimoto, the young Ikigami deliveryman, an official working at the town hall, helps a young man hide the truth from his blind little sister: he has received the Ikigami. He will become a cornea donor after his death, and his sister will be cured. The complications here are ethical; not medical, as the sister suspects that the donation will be made in the context of some kind of Ikigami death, and she doesn’t want it. Mr. Fujimoto suggests patients, doctors and nurses could secretly set their watches ahead one hour. The sister must not be aware of that. Then, when she sees that her brother is still alive after the Ikigami deadline (literally), she signs consent for surgery. Of course, she will discover the truth long after being saved from blindness. She wants to live life to its fullest. Sacrifice, higher purpose, etc. Mr Fujimoto is actually a good organ transplant coordinator. Is he here to remind us of the extraordinary difficulty (impossibility?) of thinking without ideological pressure?
Wars, nuclear energy, organ donation: without sacrifices, no national prosperity? The genetic underpinnings of macular degenerescence have been discovered, a few patients have already been successfully treated. Ikigami leads us into a labyrinth with no verbs, only adjectives: impenetrable, closed, hostile, vaporous, ephemeral.
The Ikigami (reluctant) customer is no longer the observer of this fleeting ephemeral world of distant desire. The Ikigamized Geisha does not have time to serve tea or sake, hot or cold. She will be alternatively frozen to the bones and plunged into the crater of the volcano, embodying the ephemeral. If I choose how I get to live, will I also get to choose how I will die?
On the whole, Yuki found this “Ikigami” thing quite subversive: every young person receiving the Ikigami, a “Hero of the Nation” makes the revolution, but it is only an intimate one, invisible from the outside, in the shackles of obedience — the National Prosperity Law will prevail. A vaccine that kills one young person in a 1,000… Can it still be called a vaccine? Isn’t a vaccine supposed to save lives? What if instead of killing people from a single country, the Ikigami killed young people from every country?
Ikigami. This particular destiny seems to isolate Japan on the international scene, as the young people who have received the Ikigami must feel isolated from the world, rejected by him. They are left with only one choice: making a final effort, with all their impetus, to attempt to integrate into it, forever. Yuki decided she didn’t want that direct-to-consumer Ikigami genetic testing. Instead, she would be seeking accurate, but also actionable intelligence. No Ikigami. Those lamenting patients were stupid because they didn’t want to know were either people with an agenda, or maybe they were just dangerous, hurting the cause of DTC genetics. If you are at risk for breast cancer, things can be done. BRCA1 and 2 are a thing. But how about Huntington’s disease? What could be done for people like Nono’s father, with the Brugada syndrome?
“ — Nothing, so far, I’m afraid, since he is asymptomatic,” said the cardiologist. She decided she wasn’t interested in the dark side of DTC genetics, which she called Ikigami. Maybe the horrible Huntington would be CRISPRed out of patients, one day? That would be a true revolution. The National Prosperity Law and its fine theories would be thrown to the wind. She didn’t want to be a Hero of the Nation. She didn’t want to know.
Yuki was sitting in the Yodobashi Umeda building, next to Osaka station. She was waiting for The French Tech delegation, and her brother Taka. They would pay a visit to the CoMIT, the Center of Medical Innovation and Translational Research. Enjoying her oolong tea, she was reading a book she had just found. Speaking of re-learning the meaning of life…
Catherine Coste
MITx 7.00x, 7.QBWx, 7.28x1–2 certified
Member of the Walking Gallery of Health Care, founded by US activist Regina Holliday
