F024 Gene editing, gene therapies, and genome sequencing on blockchain (Natalie Pankova, Shivom)


In November 2018, Associated Press shocked the global medical community with a news from China: A Chinese researcher claimed that he helped make the world’s first genetically edited babies.


According to AP, He Jiankui of Shenzhen edited the genes of twins with CRISPR/Cas9 technology, with the aim to make the babies resistant to possible future infection with HIV, the AIDS virus.

The medical community was more or less unanimous in condemnation of the act. CRISPR technology is too new to be used on humans.

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This was not the only news that resonated in global news in November: the startup Nebula Genomics announced it is offering free genome sequencing, in which the ownership and control of the data would be in individual’s hands. Furthermore, patients could make money with their data, as the company predicts that companies and research organizations would be willing to pay for the cost of sequencing if in exchange they also get some key medical information about the person involved.

The fast growing space of genomics

While the price of first whole human genome sequencing amounted to $2.7 billion, the price dropped to 1,000 by 2018, the company Veritas even offered it for $200 for a short period of time in November 2018. The number of companies entering the genomics space is rising, CB Insights counted more than 80 startups in October 2017.

The leading players for sequencing are US Ilumina and CGI.

Several ethical and privacy consideration are surrounding genomics: can genomic data open a new era or eugenics and discrimination based on our predispositions? What happens if our genomics data falls in the wrong hands? How much can blockchain increase safety by giving patients full control over their data?

The industry of sequencing is developing fast. In time we will have more research on correlations between specific genes, medication metabolism and diseases. Clinical practice and the way diagnosis are given and drugs prescribed will change dramatically towards precision medicine.

Beyond sequencing

The advancements in genomics go beyond sequencing: the hot topic of the last few years is the CRISPR/Cas9 technology for gene editing and various gene therapies.

According to a report published by Allied Market Research, titled, Gene Therapy Market by Vector Type, Gene Type, Application, and Geography: Global Opportunity Analysis and Industry Forecast, 2017–2023,” the global gene therapy market accounted for $584 million in 2016, and is estimated to reach $4,402 million by 2023, registering a CAGR of 33.3% from 2017 to 2023. North America is the highest contributor in the gene therapy market in 2016; however, Asia-Pacific is expected to witness the highest growth rate during the forecast period.

Gene therapies are applicable to a broad range of diseases; their aim is to radically treat the causes of the diseases instead of only relieving the symptoms. They may be effective on a wide range of previously untreated diseases, such as haematological, ocular, neurodegenerative diseases, and several cancers.

In Episode 24 of Faces of digital health podcast, Natalie Pankova talks about some of the dilemmas and promises of genomics. Natalie used to work as a medical researcher before becoming the Chief Scientific Officer and then the Chief Operating Officer at SHIVOM — a global genomics blockchain company, targeting developing countries first, to discover the genetic specifics of various ethnicities, which could improve drug development and help uncover, why certain ethnicities don’t respond to specific drugs.

The discussion also includes why is Shivom present in Nigeria and India and how business scaling looks in those environments.

Some questions in the podcast:

  • Why is the world of genomics so appealing to so many entrepreneurs?

  • How does Shivom differentiate from Nebula Genomics?

  • How is it working in India and Nigeria?

  • Since blockchain potentially gives all the data ownership to the patients, what is the incentive of governments to support the technology, since they potentially loose access to desirable population data?

  • What is the current state of gene therapies?

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