Why Google should not own my genomic data
Medicine is an organ-based science, and why this matters
For organ transplants to be legally authorised, we must not own our own organs or spare parts, especially in the context of brain death — the legal notice of anticipated death. Without this legal adjustment, transplant surgeons would be criminals, as they would take spare parts that are somebody else’s property. Brain death is a legal fiction — no scientific agreement was ever reached to define criteria of brain death worldwide, with various countries having their own criteria of scientific definition. Interestingly, in Japan, scientists and society do not acknowledge brain death at all. In the rest of the world, this legal fiction has been accepted by a majority, in order to allow life saving organ transplants to take place. Medicine is an organ-based science. When an organ is damaged, if you cannot fix it, you have to replace it. Every 10 minutes someone is added to the transplant waiting list. How many people need a lifesaving organ transplant? More than 76K people are active U.S. waiting list candidates, 22 people die each day waiting for an organ. China president Xi da da — his name on social networks like Weibo — or Xi Jinping, as you like, said he wants China to take the worldwide leadership in genomic precision medicine. China is (and has been for decades) the biggest — or second biggest — supplier of organs worldwide for organ transplants, organ donation as such is almost inexistant in China, so nearly all organs available for transplants come from organ trafficking — people being executed by the Chinese army. Those organs are being sold on a black market, mainly Hong-Kong. Also, years ago, some young people from the countryside started selling a kidney in exchange of an iPad and a Mac Book, and died shortly after the surgical procedure, due to poor hygiene. Talking of bad and unwanted buzz for Apple…
That cool gene editing tool CRISPR is becoming a geopolitics editing tool
Let me start with this friendly reminder: North Korea has nuclear weapons. So, making money on the black market of organ transplants thanks to Muslim Chinese minorities — people from a Chinese province called Xinjiang being killed for their organs — is becoming highly unsustainable. Why? Because Xinjiang, populated with ethnic Uighurs, is located right next to Daesh territories, and Chinese authorities think some kind of Daesh-contamination of China could happen via this Xinjiang province… Not everybody knows this, but North Korea is trying to make alliances with Daesh… I’m pretty sure Chinese secret services are aware of this, though… This is why China is so keen about taking medicine to the next level, where we don’t need to take spare parts from humans in order to cure other humans. We would like to think medical science and geopolitics are not intertwined with each other. Whenever it is not the case, we think it has to do with bigotry; not with science. It is the exceptions which prove the rule.
Now you might wonder whether or not Daesh has been involved with organ trafficking. Ha. That’s what Chinese secret services are here for. To prevent it from happening. They are the people who are in charge of everything in North Korea; not the Chinese government. About U.S. & Chinese efforts to prevent the merger of two silos, well-funded terrorist organisation Daesh & organ trafficking in Xinjiang, a Muslim Chinese province: there are several ethnic groups that are being targeted as a source of organs in China. Typically, they are sentenced to death, executed by the Chinese army and the vital organs that are retrieved from the (sorry) dying corpses are sold on the black market of organ transplants. Those groups are, mainly but not only: people from Tibet, members of Falun Gong — a sect not exactly in favour of Chinese government — and people from Xinjiang, a Muslim province in China, with a lot of natural resources. A very interesting place for those wanting to make money. This place, Xinjiang, is also interesting for another reason: if you look on a map, you’ll see that their immediate neighbours are... Daesh. So to make short a long story, Chinese authorities are worried about a contamination of Daesh via that Xinjiang province in China. Fine, but here comes the icing on the cake: North Korea is now trying to make alliances with Daesh, and ex-soviet republics. Chinese president does not have a say, or at least, he cannot make final decisions, about how North Korea is being ruled. Instead, Chinese secret services are ruling the place. Remember, in China, you are dealing with a massive number of people. My guess would be if a tiny & minor “terrorist” attack makes 100 victims — you’ll never hear about it in the news right? — , retaliation by Chinese secret services can easily kill ten times more people… and it still won’t make it to the news.
North Korea has nuclear weapons. So, making money on the black market of organ transplants thanks to Muslim Chinese minorities, those people from Xinjiang killed for their organs, is becoming highly unsustainable.
We know that Asia has a history of medicine based on prevention, rather than on this extreme solution: transplant. So right now, CRISPR is becoming a geopolitical editing tool (in China), as the government wants China to become the worldwide leader of advanced biotech — preventative medicine. Also, remember: in China, the boss of a company can disappear just overnight — abducted not by the aliens, but by Beijing authorities, probably executed by the Chinese army. People are used to that. Xi da da has a very clear message for “pharma” and BATX: get ready for precision medicine, the sooner the better.
The more I spend time in China, the more I am convinced that the US and European people are a bit ignorant of Made-by-Asia realities. So maybe the US think they have all the time in the world to implement “advanced biotech”, because they lead the world, right? In Beijing last December, I was attending a military conference, where the US army was in the process of realising that AI from the Chinese army had just surpassed theirs... At middle school, I’ve learned that middle class is always triggering the biggest breakthroughs. Guess where the massive rise of middle classes is happening right now? Yes, your answer is correct. Asia.
What is the situation about organ transplant needs in China? “Each month, over 1,400 patients are added to waiting lists, with fewer than 900 procedures undertaken, said Wang Haibo of the China National Organ Donation and Transplantation Committee.
Data from COTDF shows that about 13,000 organ transplants were performed in 2016, while China’s per million population (PMP) in donation reached 2.98, up from 0.03 in 2010. The rate is still very low, but the COTDF and the government are doing everything they can to improve the donation rate.
COTDF’s organ donation registry was launched on Alipay last year and many of the online payment platform’s 450 million users have since signed up.
People can register on the LOVE HOPE donor registry in Alipay in ten seconds, as all users have already submitted their personal information when they registered on Alipay, said Wang. (…) China had the most deceased organ donors in Asia and the second highest number globally at the end of 2016, following the United States, said Wang.” (Source)
Matching your genotype with your phenotype is what will make Precision Medicine happen.
Phenotype is your medical, lifestyle data. What you are eating and drinking, your activity, sleep quality, your outcome if you are a patient, your response to drugs (side effects, metabolism). Connected devices can provide us with that kind of data, as well as spirometry, air quality, cardiac rhythm, how you behave when driving, your emotions, etc. Genotype is all the things that can be done with your DNA and microbiome: sequencing, analysing the variants, coding and non-coding regions — the very young science of epigenetics — , establishing your ancestry, gaining a better insight into your medical profile, using your microbiome to fight some kind of antibiotic-resistant infection, which is something I’ve experienced this summer.
Conventional medicine, based on organ replacement — let’s call it spare parts medicine — is in a crisis. How can we bring medicine to the next level? eGenesis in Boston and China is a company working on xenotransplantation — making human organs in pigs. Also, a new device can begin repairing damaged organs in seconds, though this has only been tested in mice: “the technology known as tissue nanotransfection (TNT) uses a small coin-sized silicon chip that ‘injects’ genetic code into skin cells, converting them from one type to another.” (Source). Now you might be left wondering why drug discovery is so hard and how we’re trying to find new medicines faster and more cheaply? Dr. Anne Carpenter and her lab at the Broad Institute (Boston) may have the answer. She said in a recent public presentation that we need to match your genotype (your DNA data) with your phenotype (disease or disorder, life style, physiological data). Now this may sound a little cryptic to you, but matching genotype with phenotype can be done with an IT tool, written with the help of the MATLAB software, called CellProfiler. Talking about the digitisation of human cells: no wet lab needed, only dry lab… Desktop Genetics company (UK) is even building an AI to engineer genomes. They “offer sgRNA design tools and custom CRISPR library design and validation services to investigators globally.” This dry lab will be used by pharmaceutical companies, medicine, and also industry. It is not mainstream today, but how about tomorrow?
And now, we need this genotype-phenotype matching tool, CellProfiler, for whole individuals; not only for a few of their cells. That’s where Genomic Precision Medicine has a transition problem. Can a single app reunite people with their genomic and medical data? I don’t think so. In China, iCarbonX (the equivalent of Illumina in San Diego) wants to manage the health of no less than 100 million human beings (?!?), in curative mode and probably also in predictive mode. From a few human cells to a hundred of million human beings… Earlier this year, iCarbonX partnered with the biggest association of patients in the US: Patients Like Me (see corresponding press release here). Conventional medicine — or spare-part-medicine system — never gave me a chance to own my medical data as a patient. From the legal point of view, in France, I’m de facto an organ donor. In France we have an opt out system; not an opt in system like in the US, which means I do not even own my own organs! How do we transition to the future of medicine, where I am able to browse my genomic and medical data on my iPhone, share — sell — some of it? Where are the patient-centric tools for patients to collect, share & monetise their medical, genomics, lifestyle, IoT data with academics & pharmaceutical industry? is there even an app for that?
Why Google should not own my genomic data
Yesterday I talked with French biologist Patrick Merel, from Bordeaux, France. His startup in San Diego is called Portable Genomics. His business plan is plain and simple: your data belongs to you. He would like to work with WuXi NextCode (USA), “leading genomic discovery, powering clinical diagnosis”. WuXi, generating data in genomics, need to collect phenotype data as well — this is where they need a provider. Once this is done, they can sell phenotype and genotype data to pharmaceutical companies. Portable Genomics sees WuXi as a business accelerator. I must admit I was quite puzzled by this. WuXi is bound to work with iCarbonX sooner or later. And iCarbonX belongs to the BATX world (Asia); not to the GAFAM world (Western), whereas Merel and his startup definitely relate to GAFAM. In China they are building their own Intellectual Property or IP. They don’t want to pay royalties to Apple. Then Merel tells me about his countless biz discussions with insurers, pharmaceutical companies, mHealth companies, etc. All to little avail. mHealth companies are de facto taking people’s data, they are not interested in giving it back. Portable Genomics is a small startup, and as such, extremely unlikely to make deals with pharmaceutical companies, or trigger the world of medical insurance to undergo a revolution. How can you disrupt the whole of medical industry when you are developing “a patient-centric tool for patients to collect, share & monetise their medical, genomics, lifestyle, IoT data with academics & pharmaceutical industry?” My two cents: if you work with Google, you can make it happen. If you keep trying to make deals with the industry, insurance or pharmaceutical world, that’s all very nice, but to me it pretty much looks like some kind of Tupperware meetings. We are all waiting for that “Patient Will See You Now” revolution, the patient-centric medicine that needs a patient-centric tool to get legs, to go mainstream. Topol, a cardiologist, author of this book, keeps saying we need patients to own their data as a precondition for Precision Medicine. Again, my two cents: maybe Google should listen to what my favorite Tupperware meetings expert, Portable Genomics’ Merel, has to say. If I get to own my data, I’m interested in taking part in this Precision Medicine adventure. It will make that organ trafficking nightmare, killing innocent people worldwide, obsolete. And, maybe more importantly, it will provide alternatives to massive numbers of people waiting for an organ transplant, dying because they could not get one. And having watched in the past a teenager die after a lung transplant — the only “cure” for cystic fibrosis today — I know that a transplant is not a cure. But if Precision Medicine is going to be some ultra-lucrative niche for Big Pharma, miss me with the hype, I’m not interested.
Catherine Coste, MITx 7.00x, 7.QBWx, 7.28x part 1 & 2 certified. Based in Japan
