Why did Google computer scientists open source their children?



Open source, which makes computer program source code widely available to the public, and freely available to anyone, is what Google supports as it helps the development of technology. Two computer scientists who met at Google announced that they were open sourcing their babies, and that's why the blog service ' Medium ' spells out why.

Saving Lydia: Why I'm Sourcing My Baby To Save Her and Millions of Others
https://medium.com/lydian-accelerator/saving-lydia-62a1c0bdf0fb

Lohan and Jen had a background that they studied computer science together from different countries of origin, got married from having met on Google, and were given a daughter named Lydia Nillgen. The wife and wife were happy, but their daughter, Lydia, had an attack soon after birth and was to spend three weeks in the newborn specific intensive care unit (NICU). As a result of the investigation, we found that Lydia had a serious disorder due to a mutation in a gene affecting brain function. It is said that Lydia can't get up, walk or talk because of this gene mutation.



In the face of the shocking facts, the Lohans and Jen smashed all the information. The two read hundreds of scientific articles in six months, contacted the world's top scientists, translated overseas medical records, formulated medicines at home, and paid $ 1.5 million (approximately 16300). It is said that they have collected 10,000 yen and established a non-profit organization for research. The doctor told me that 'very rare disease' 'There is no cure,' but in fact 'Lydia can be treated in a few months, but with existing pharmaceutical models Lydia or similar disease The two came to the fact that they could not save millions of children.

DNA contains 6 billion bits of characters, but this information includes some 'typosers' or mutations. It is said that 7 million people in the United States have a serious effect on the brain this mutation. Because gene mutations occur in billions of parts, they are difficult to detect in perinatal care, and few people have the same mutations. In the case of Lydia, there is a mutation in the 683rd gene called KCNQ2, but there are only two children in the world, one in Greece and one in England, who have similar mutations. In other words, considering the disease caused by genetic mutations as a whole, the number of patients is very large, but it is rare when viewed as problems with individual genes.

In the general pharmaceutical company's approach of focusing on diseases with a large number of patients and developing drugs, diseases caused by individual gene mutations are not emphasized as 'infrequent patients with few patients'. However, in fact, the disease caused by genetic mutation is millions of patients, and it is not a rare disease, and 'Lots & Gen. needs a systematic and platform-driven approach to correcting typos.' The couple says.



Unlike cancer and chronic diseases, single genetic diseases can pinpoint the cause with pinpoint, and already

nucleic acid medicine (ASO) is effective against genetic diseases such as spinal muscular atrophy and Batten disease I know what to do. ASO does not target protein as in previous drugs, but targets it at the RNA level. ASO can target specific mutations simply by changing the letter of the code without changing its chemical nature or dose. And, 'N-of-1 treatment' which individually optimized ASO succeeded in 2018 . Although many new drug developments take several years to enter into clinical trials, in the case of N-of-1 treatment, which is a custom-made treatment, clinical trials can be skipped, so it takes one year from diagnosis. It is possible to make a remedy.

Existing pharmaceutical companies have not established a way to generate big bucks from personalized, personalized treatments. Because of the custom-made nature, there are no 'epoch-making drugs' for advertising and no intellectual property rights to protect. So Lohan and Jen set up a non-profit organization called Lydian Accelerator to fill this gap.



As a computer scientist, they believe in the potential of an 'open platform' and open source tools, data and processes for N-of-1 therapy, enabling anyone to launch an institution That you want to do. From now on, it will be possible to share data safely and efficiently, and it is supposed that a person working on N-of-1 treatment will access a repository and work on a mechanism that can be fed back. If more data are collected, it will be possible to save time and money even for lab work that is expensive and time consuming as of 2019. Experts from Boston Children's Hospital, Stanford University and Northwestern University are also working on the project.



The couple is asking for donations to make the platform work, and the target amount is $ 2.5 million (about 171 million yen), which already has more than $ 1.8 million (about 195 million yen).

Donate — Save Lydia
https://donate.savelydia.com/

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