Your DNA Will See (and Mutate) Your Credit Card Now
Your genetic data linked to your credit card. You are buying online a plane ticket, plus $10 for travel insurance, why not, yes, I want to add this. But when you are ready to pay, the $10 have suddenly become $2,000 #TheFrenchTechComedy by @DnaCowgirl season 2 #TEASER
This is Episode 1 of The French Tech Comedy Season 2, for Dr. Laurent Alexandre.
For Season 1, see here.
“Your DNA Will Mutate Your Credit Card Now.” Takafumi Nagato, the oncologist who was leading the lab of Bioinformatics for personalised CAR-T-therapies in a Tokyo clinic, was lost in translation. So this was the new US bestseller, written by a doctor who was already a rock star, because of a book with a similar title, promising the patient would see the doctor now. Data privacy for patient centric medicine, how to handle patient data in the world of healthcare and fitness, and of genomic precision medicine. He had just gotten an exemplar of the book, sent by Tamir Subramanian, PhD, surgeon, oncologist and geneticist, at Charitee Hospital, NY. Journalists and media called him “Sub”, like subculture in medicine: evidence-based medicine, instead of eminence-based medicine. If Shōnen mangas like The Ancient Magus Bride was aimed at a young male audience (which they call subculture in Japan), nice-looking Subramanian’s books (all bestsellers) were aimed at American women — the decision-makers for health care in the family. Taka was neither. But the U.S. mantra — Your.Medical.Data — was all the rage; not in the real world, though.
“ — Dear colleague and friend, please find enclosed a copy of my unpublished book Your DNA Will See Your Credit Card Now. I would be very happy to read about your comments. Would you consider attending the upcoming Future of Genomic Medicine session in NY as a keynote speaker? What I have in mind is a 30 minutes slot to present cases (fundamental research, pre-clinic and clinic) documenting the blurring frontier between curing and enhancing humans in the post-CRISPR era. Please get in touch with the Charitee P.R. in charge: Nanouk Miak, contact details are as follow: nanouk.miak@charitee-clin.org. Can’t wait to hear what you have to say on this! Please submit your presentation by February 23rd, 2018, or during the meeting.
Best,
Sub.”
While leafing through the book, Taka was trying to figure out if he could cram this into his agenda that felt more like a crowded city bus in India in peak time than the cat bus in My Neighbour Totoro. He was pioneering T-cell therapy in cancer patients, and trying hard to hide one of his patients from the media: Chinese giant TenBa’s founder Ken Ba, a zillionaire from Shanghai, with relapsed cancer.
It looked like Taka was not the only one with an ambitious agenda. Sub’s schedule was… impressive, to say the least:
“… I see rather a revolution, as the microbiome, which could be diverted, could become our own energy factory…”
According to Sub, life science would bring a revolution in the world within the upcoming couple of decades. In two years (even next year!), CRISPR heroes (myriads of people, actually) could get a Nobel Prize. In particular, two women and a man. All thanks to that gene editing cool tool:
“The unassumingly named CRISPR/Cas9 is a technology that stands to remake the world as we know it. By allowing scientists to more easily than ever cut and paste all those As, Cs, Ts, and Gs that encode all the world’s living things, for one thing, it could one day cure many devastating diseases.
All that power, though, comes with one pretty sizable caveat: Sometimes CRISPR doesn’t work quite like we expect it to. CRISPR sometimes causes off-target effects. And for scientists doing gene editing on human patients, those mutations could wind up inadvertently causing problems like tumors or genetic disease. Yikes.
A new study from the Salk Institute suggests an interesting workaround: If we’re trying to change a gene’s behavior, why do we need to actually edit it at all?
In a paper published Thursday in the journal Cell, the Salk scientists suggest doing something else entirely. Instead of using CRISPR/Cas9 to cut apart strands of DNA to either remove genes or insert new ones, they instead used CRISPR as a switch that simply turns genes on and off.
Think of it as CRISPR disarmed. The function that guides the CRISPR system to a precise location in a genome is still there — it’s just missing the scissors. Instead, molecular switches are used to turn specific genes on and off. The resulting changes aren’t genetic — they’re epigenetic. Taken literally, epigenetic means ‘above the gene.’ The epigenome tells a genome what to do. By modifying the epigenome, it’s possible to control how a gene behaves without actually modifying any DNA directly. It’s sort of like gene editing, without actually doing any editing.
Working with mice, the scientists were able to reverse the disease symptoms of kidney disease, type 1 diabetes, and a form of muscular dystrophy. In the mouse with kidney disease, for example, they turned on two genes associated with kidney function and saw the kidney function improved.
It provides a proof-of-concept that this system might be adapted to treat human diseases in the future,” Liao and Hatanaka said.” (Source)
Taka assumed that Sub was referring to French scientist Emmanuelle Charpentier, and her colleagues in the US, Feng Zhang and Jennifer Doudna. Speaking of a crowded city bus in India in peak time: this new religion, with Jesus CRISPR superstar, was the consequence of hard work from myriads of individuals working in academia and elsewhere. But the Nobel (the big N) was only about the Father, the Son and the Holy Spirit.
According to Sub, after phase one, the CRISPR Nobel Prize, would come phase two: we would successfully treat the first genetic disease in less than 5 years, and in 10 years, we would treat them all. Phase three: we start in parallel to ‘enhance’ our abilities by improving our genes, and 20 years later comes phase four: some kind of genetic human trafficking, linked to enhancement, will occur — dark labs will emerge — , and in less than 30 years we will get to see the very first hybrid mixing man and animal, like in this anime that is airing now on NHK (Japanese National TV): The Ancient Magus Bride. In parallel, see how information technologies bind to the biological, implant themselves in our bodies etc. In a nutshell and in no time, the world would have to transition from this…
… to this…
Sub’s agenda was certainly optimistic.
Taka was trying to concentrate on the work at hand. The emergent and important. But he was now surrounded by chit chat. Koba, the manga artist, had just just dropped by his office for a chat, Yuki on his side. They were still talking about this manga book project, The French Tech Comedy. A couple of post-docs were hanging around. Incoming snippets of conversation, distracting him.
“ — It’s funny that civilisation now is a machine that converts petroleum and coal into pretend computer money.”
“ — The bitcoin computer network currently uses as much electricity as Denmark. In 18 months, it will use as much as the entire United States.”
“ — A petroleum-backed cryptocurrency? Wait till the A.I. is given this objective.”
“ — This sounds like pure Asimov.”
At the same time, Yuki and one of the post-docs were starting a Skype session with French biologist and startup founder Mougin, about his Gene-i-us project. Mougin actually wanted to get in touch with Nono, but reaching out to Yuki was a good place to start:
“ — Your DNA and medical data on your smartphone. Browse it on iTunes, own it and monetise it. I’m sure Facebook is interested and I’d like to pitch them,” said Mougin. He continued:
“ — I’m here to help Facebook in their reflexions about health data, the adequate biz plan, and I’d like to show them our patent regarding the presentation of genomic data à la iTunes. Your genome on your mobile. Own your data.”
“ — Rings a bell,” thought Taka. Mougin was one of Sub’s little protégés.
“ — Facebook might want to buy our patent and enable patients to navigate their genomic data like they would navigate music on their iPhone, thanks to iTunes, which is both a software and a shop. Imagine this new tool on their platform, it would be huge! Patients taking advantage of privacy and navigability for their own genomic (and medical) data at the same time, thanks to Gene-i-us, available on the Facebook platform. What business model do we want for our own DNA data privacy?”
Mougin went on. Taka found he was sounding very much like Sub, the US rock star and his upcoming book: “Your DNA Will See Your Credit Card Now.”
“ — What do you think, Taka?”
Mougin was waiting for an answer, full of hope. Taka really didn’t know what to say. He was trying to save patients’ lives, as if this wasn’t enough already; science and society endless debates were not his strong suit. Invent new treatments, make them work, do it at neck-breaking speed, and while you are at it, help amend laws and bioethics rules and sell patents and… what else? He was only an oncologist; not a teacher, a parliament representative, a lawyer, a businessman, a Facebook executive, a patient activist, a movie producer. Society made him think he needed to be all of them. Failing to meet this expectation could only mean one thing: he was a nobody. Speaking of sugoi expectations…
“ — This certainly sounds very interesting,” he said, “but that Your.Medical.Data mantra it is also vague and noncommittal. Wishful thinking and that kind of stuff. Are you sure it is not a bit too early for something like this? I mean, monetise your DNA data and all?”
“ — China is crunching huge numbers, they don’t have issues around data privacy and patient consent. If we want to stay competitive in an individualistic country like the US, we have to set up and implement the right biz plan. You know just as well as I do that to understand what the genome does (we hardly know anything today, right? just a couple of things), we need data. The data from a patient in Oregon, US, will help cure a patient in Wellington, New-Zealand, right? This is how it works. Loads of data, coming from loads of people, worldwide. I’ve got a tool that can help us do just that. It is called gene-i-us.”
“ — But media write everyday about the importance of having and sharing your genomic data, yet very little is being done in the way of owning and sharing one’s DNA data. I mean…”
Mougin interrupted Taka:
“ — Couldn’t agree more. We need to speed things up, or we’ll lose our competitive edge.”
“ — China, right?” said Taka.
“ — I don’t want the Chinese government, or the US government, or any government, for that matter, to own my DNA data,” said Yuki.
“ — That’s why tech giants like Facebook need to realise the importance of having and sharing one’s genomic data, for everyone. Gene-i-us has a patent for a capture / representation à la iTunes that could seduce Facebook users, and the incentive to do that, would be to enable these users who bring their genomic data on the Facebook platform to make music from their DNA/medical/microbiome data, via our other patent, and TheGroovyGene. A pure gamification process, to empower users and academia and pharmaceutical companies thanks to higher volumes of data that could be exchanged, in fair trade mode. And the icing on the cake, or last but not least, Facebook gets to be a proxy for all providers of genomic tests.”
“ — I see,” said Taka:
“ — Your Gene-i-us patents would grant Facebook access to users with genomic data, which of course would make the tech giant a highly interesting prospect (or client) for pharmaceutical companies.”
“ — My point exactly,” answered Mougin, grinning.
“ — Nono is having a party here in Singapore, on Saturday. Would you like to jump in? I mean, literally. There will be a gigantic swimming pool,” said Yuki.
“ — That’s very kind of you, Yuki,” said Mougin. “But I’m on a tight budget right now. I’ll have to stay in San Diego, I’m afraid.”
“ — San Diego?! Lucky you!! Actually I’d rather be in San Diego than in Singapore right now. The rainy season has started here, and we are in for a treat…”
The chit-chat was going on and on. Taka was trying to concentrate. He had an important session with Ba, his patient, that would take place in just a couple of weeks. He needed to get ready for this. Sometimes Taka was feeling very lonely…
“ — … ask Taka. Hey, Taka, what do you think?”
“ — …”
“ — You haven’t been paying attention, have you?”
Yuki was looking at her brother. She was annoyed.
“ — Koba was suggesting something interesting for the manga. That French Tech manga thing, you remember?”
“ — Sure,”, answered Taka bitterly. So much time devoted to the damn “French Tech Book” project, to no avail. Book, illustrated novel, manga, game, whatever. He had called the project clinically dead.
“ — I think we should concentrate on the blurring frontier between curing people and enhancing them, I mean…”
Yuki’s brother interrupted Koba, like he was talking to himself:
“ — You gotta be kidding.”
“ — You don’t think it’s a good idea?” asked the manga artist.
“ — What do you have in mind?” asked Taka.
“ — This, look” said Yuki.
“ — Can’t read it. It’s French, right?”
“ — Yes. They say they found a way to cure epilepsy, but it is strongly linked to enhancing people. Koba suggests we deal with the consequences of this in our manga.”
“ — Really?” Taka was already looking this up on Google. A few articles on PubMed and a few WhatsApp texts later, he was lost in thoughts. The rest of the group was waiting.
“ — So?”, asked Koba.
“ — So?” answered Taka.
“ — Well, what do you think?” asked Yuki. Is this a good idea or not?
Again, Taka was lost in thoughts.
“ — How fast can you get this done? I mean, the drawings, the text, the layout? Can you do it in English and Japanese?” asked Taka.
“ — That’s ten weeks’ time...”
“ — Sorry?” asked Koba.
Taka was calculating.
“ — Can you do it in ten weeks?”
“ — Oh, er… I’d need to see my publisher to discuss things, see if they would be in favour of this, maybe if I’m lucky I could get an answer in a couple of months…”
“ — Is that a yes or a no?” asked Taka.
Koba was hesitant.
“ — I’ll help you outline the story, you’ll do the drawings, so that’s a yes,” said Yuki.
Taka was pecking away at his computer again, seemingly paying no attention.
Koba was starting to think Taka had lost interest in the project, and Yuki was being over-confident.
“ — Yuki, I need to speak to Nono,” said Taka.
“ — Well I’m not his secretary.”
“ — You didn’t say that to Mougin, just saying…”
“ — It’s not the same thing. Mougin needs money. It’s urgent.”
“ — So do we,” said Taka.
“ — What do you mean?” asked Yuki.
“ — I need adequate funding to get this manga book done in ten weeks’ time. Nono knows how to pull ropes for funding; I don’t.”
“ — So suddenly, you’re interested in our manga project?” asked Yuki.
“ — I’m gonna present it at the Future of Genomic Medicine in NY at the end of February. I’m a keynote speaker at this meeting; your manga book will be my presentation. I’ll have to write to Sub to ask if Koba can attend too.”
“ — So… Nono, right?” asked Yuki.
“ — Yes. Nono”, answered Taka.
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
