Whole Genome Sequencing for Free, Medical Diagnostic (Interpretation) for $250. The NewBorn Symphony Project
This is episode 5 of The French Tech Comedy.
Taka had learned the hard way to believe in very little in the way of what got printed (or e-printed) in the press.
The “first gene therapy” approved in the US today?! Again?! The headline from the New Yorker caught his attention. He quickly read the article. But the paper’s story was making two claims which couldn’t both be true at the same time. Previously, an oncolytic virus which also delivers a gene to tumor cells was approved. Called Imlygic. And there were 34 gene therapies in phase 3 of drug development… Surprise: among them, there were several oncolytic viruses that also deliver genes. An oncolytic virus is a virus that preferentially infects and kills cancer cells. As the infected cancer cells are destroyed by oncolysis, they release new infectious virus particles or virions to help destroy the remaining tumour. Oncolytic Viruses include a substantial number of viruses, naturally occuring and genetically modified, which can attack and kill cancer cells specifically. Viruses can be genetically modified to target cancer cells using certain membrane receptors or viruses use a different kind of selectivity in which they are able to infect both normal and tumor cells but only replicate in tumor cells by taking advantage of certain hyperactive pathways in those kind of cancers. (Source)
If oncolytic viruses can be gene therapy, then Imlygic is the first gene therapy in US, he thought. If they aren’t, the tally of phase three drug trials is wrong. Interestingly, the “first gene therapy” approved in the US claim originated in the Washington Post earlier in year and was later made by FDA itself. Taka was able to add the right hype filter to what you can read in the press, at least in his domain, gene therapy. He was not sure this was the case for the average lay person in the US or elsewhere. But his best tool for filtering all the hype remained his patients. He couldn’t wait to see how Ba was doing. He hated the damn publish-or-perish mantra. Shouldn’t it be cure-or-perish instead, especially for doctors? Both were referring to quite distinct realities. An A.I. will soon publish in any language at the speed of light, maybe this was already the case today. Zillions of scientific articles in (electronic) white papers. But how about people needing to be cured? He was sick of the competition between his colleagues. He wanted to cure Ba and many others after him. He had no interest in finding a niche market in the branch of scientific publications. Now medical students were choosing their PhD orientation according to the domains that had little, if any coverage at all in the scientific press… Well covered domains, even if more useful to society, meant more competition. Academia was cutting itself from society, one article at a time. Taka was done with the reading of the article by the New Yorker. The price tag on that new drug was quite expensive. Half a million dollars. If it didn’t work, the company said the patient would have his money back. There was an « extended » six-month-guarantee. How about patients who would relapse within one year of treatment, or more? Speaking of the US pharmaceutical industry trying to turn precision medicine into an ultra-lucrative niche market… Taka believed in semi-personalised treatment. It was his hope he could make it scalable. And forget about the nonsensical guarantee and the unreasonably high price tag…
As expected, Taka’s team didn’t get the grant money for researching about telomeres in ageing medicine. But thanks to Nono’s videos, they caught the attention of somebody totally unexpected. This Berkley-based molecular biologist, one of the CRISPR discoverers (no less), wanted Nono’s team to help sparkle public discussions around the world in gene editing. Nono said the A.I. could help outline manga stories, musicals, online games and cool videos in no time. He even talked about his Musicome project: cool tunes made from the human genome. Madonna, Lady Gaga, David Guetta, they all needed to be pitched. « Great. Nono is heading my department, now. » Taka felt like this CRISPR thing was a revolution as big as a tsunami, and he knew only too well that tsunamis were bad news for power plants… He felt it was only reasonable to be defensive. He was more thinking along the lines of avoiding another Fukushima in synthetic biology. Nono had been invited to deliver speeches and presentations in Japanese middle- and high schools. For the vast majority of girls, CRISPR meant the hope that they would be able to turn themselves into some kawaii manga creature, with cute cat ears and paws or tail, all real ones of course. Boys also wanted super powers, of one kind or another. Taka found this appalling. Nono thought this would be fun. He knew Yuki was following a very strict routine everyday for her training as a professional geisha, and this did not look like fun to him. Frustrated clients — today’s geishas are allowed to choose their partner in sex — could complain to the management if the girl had turned him down. Jealous colleagues, rivalries, all the pettiness… Physical suffering, starvation, exhaustion… To Nono, all this needed to be CRISPR-ed and rebooted. To Yuki, his life as a French young engineer working in Japan looked like some kind of never-ending flirting and partying and the exciting discoveries and being constantly surrounded by cute girls finding French boys soooo looomantic. In contrast to this, her life seemed so austere and monotonous. Training, more training. Imposed makeup, hairstyle. A wave of rules, like a tsunami, ruining her life. What is it she wants in life? Finding a great husband? Having kids? A career as a geisha or artist? Staying forever young and attractive? Here parents had great expectations. She was not quite sure if Yuki actually meant snow in Japanese. Or maybe, some kind of glossy perfection? Nono was her oxygen. With him, she could laugh at herself, he was helping her unsettle suffocating routines and norms. She had caught Taka’s eye on a few occasions and knew what this meant. Leave Nono in his own world. Yours and his do not mix. Abide by the rules or you will ruin your whole dream. You are about to become a real Geisha. Isn’t that what you have always wanted? But right now, Yuki was a bit lost in translation. Lost between two worlds.
« — You can’t have just the best of both worlds. The other day, Nono was in charge of enrolling new patients for our phase 3 gene therapy clinical study. Kids. All of them. And all of them, dying of cancer. »
Yuki started crying. Then, she remembered seeing Nono on that day, or rather, wasn’t it the next afternoon? She couldn’t remember exactly, but one thing she knew for sure: he was just behaving plain normal, grinning as usual.
« — Why is he working with you? Technically, he is an A.I. engineer; not a physician or a trained microbiologist. » To her, it didn’t make sense.
« — One day, I overheard a conversation. Nono was talking to his parents. His father was going to the burial of his dead brother. It was the third uncle that Nono was losing to some kind of genetic disease we hardly know a thing about. »
« — I see… A.I. is operating in a transversal manner. Same goes for disease. »
« — Exactly. » She also knew that CRISPR offered the potential to edit and repair mutated genes directly in human patients. In laboratory-grown human cells, this new gene-editing technology was used to correct the mutations responsible for cystic-fibrosis, sickle cell disease (severe anaemia), some forms of blindness, and severe combined immunodeficiency, among many other disorders. Researchers had corrected the DNA mistakes that cause Duchenne muscular dystrophy by snipping out only the damaged region of the mutated gene, leaving the rest intact. CRISPR might even be used to treat HIV/AIDS, either by cutting the virus’s DNA out of a patient’s infected cells or by editing the patient’s DNA so that the cells avoid infection altogether. Physicians like her brother had already started treating cancer patients with « souped-up immune cells whose genomes have been fortified with edited genes to help them hunt down cancerous cells. » (1)
Yuki was already eating bioengineered food, like soybeans with more essential fatty acids (less saturated ones), fruit and veggies needing much less pesticides, vanilla made from yeast instead of petrochemicals, a few of her stunning kimonos were made from bioengineered spider silk. But the bad news was, and she knew it since Taka had experienced it just last week, the US were cutting their funding. It had become increasingly harder for American middle-class to get by, while the internet zillionaires were getting richer and richer, making the immense majority feeling cheated and prejudiced. American President announced the people had voted against the funding of Obamacare and synthetic biology. « Make America Great Again. »
« — Even if they are hurting themselves in the process, they don’t want the tech gurus to get richer while they just get poorer. »
« — I can understand this, » said Yuki. But there was more to this; even his own brother didn’t know how well informed Yuki was. A geisha is always well informed, by the way. It’s her job.
Nono was back from China. He had been raising some serious money in Shanghai. Via Tencent and Alibaba. She also knew Taka was furious about this, but then it didn’t seem like he had a choice. No money at all was the worst prospect he could be facing. Like plenty of his colleagues, right now…
« — That’s putting even more pressure on my lab. And there’s this conflict of interest, obviously. I’m trying to cure a patient who happens to be my main investor at the same time. »
« — I beg to differ, » answered Nono:
« — The patient is merely showing his motivation and trust in your ability by giving you his money. » It seemed that Taka and Yuki were living in a very different world. The scientist was always worrying about money, raising funds, chasing investors. Even communication meant money. Keynoting scientific speakers were on the stock market. They had a value, they were sophisticated players — arguably against their own will — in hedge funds. Yuki’s world was utterly different. She had never been put in a situation where she would have to ask for money. Not even once. Never ever. Did she need or want a new kimono? Training fees? A room of her own? Pocket money for when she was away from home, no home-made bento and miso soup available for her? She just needed to mention it, or sometimes, she didn’t even have to mention it. She never knew for sure where the money was coming from. Her dad? Her brother? Her salary? Clients? Her former teachers? Technically, she didn’t even get paid monthly. Salary, wages, she knew none of these realities. Things were just here, available for her whenever she seemed to need them. She was constantly training, rehearsing. For a karaoke session, or the upcoming spring and summer festival in Kyoto, or the ultimate new season at the Tokyo opera was suddenly in full swing and urgently needed her assistance. Also, she was involved in doing some modelling in fashion, attending master classes and escorting very influent people (mostly entrepreneurs and politicians) during social and festive events, and of course attending private parties, mostly organised by conglomerates. Serving tea and dinner to clients. Entertaining them, making conversation, and escorting them to some even more private night clubs. That was the part she hated. She had to wait for her client to show up again, whatever the shape he was in, whatever the part of the night or day it was, and make sure he was safely on his way back home. Secrecy obligation was a lifelong duty for a geisha. Also, she was in charge of teaching and coaching younger flute soloists and ballet students three times per week, only a couple of students at a time. In the hope she could become a successful YouTuber and escape the escort-girl grind, Yuki had started broadcasting her videos on You Tube. « A Geisha lost between two worlds », where she was merely telling about her life as a geisha in modern Japan. Also, she was updating her public on the progress made by Taka’s lab, showing the work done by Nono — short videos he was preparing for her show. The tsunami effect kicked in where least expected for Yuki. The show went viral, mainly because of Nono. David Guetta himself ended up showing interest in the musicome project (cool tunes made from your own DNA), mainly for reasons of explosive fandom. Nono was now surrounded by armies of kawaii hysterical young girls, while Yuki was back to the escort-girl grind…
From his bed at home, trying to recover after the treatment, Ba was watching these videos on YouTube. He had got word almost before anyone in the world that CRISPR could be injected into human embryos, as this had been done in China for the first time. However, another use of CRISPR as a vector had been discovered. If you injected digitised music into human embryos — said music had been recorded in DNA prior to its injection — , you were able to retrieve a whole symphony from the blood cells of the newborn baby, after his or her birth. One biotech in China was owning 21 patents in the Newborn Symphony Project. While Guetta and Nono were hyping about « cool tunes made from your DNA », but clearly had no idea how to do it, Ba was thinking of offering them some kind of win-win deal:
“ — Help me cut the price of the damn gene therapy, and welcome on board of the Newborn Symphony Project, make yourselves at home, guys.”
He had a plan: whole genome sequencing for free, medical diagnostic (interpretation) for $250. And this would probably happen before long. Tencent was injecting loads of money into precision medicine, and so were other tech giants as well. Even if the US were slowing down, they could be pretty fast at reversing the trend. They were capable of turning the tide faster than anyone in the world. But for now, they were putting their foot on the brake.
- Information found in the outstanding book A Crack In The Code, by Jennifer Doudna and Samuel Sternberg. Also, special thanks to Antonio Regalado, MIT Tech Review (biotechniques), for his twitter account.
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
