The concern over large technology companies owning and monetizing your data has arguably reached a fever pitch in the last year. One startup, Degenics (http://degenics.com) argues that we are not worried enough about a particular kind of data that is starting to gain immense corporate traction.
“We need to be more aware how personal genetic companies manage your data,” said Ms. Pandu Sastrowardoyo, the initiator of Degenics, in an interview Wednesday (1/20/21). “These companies have your DNA-KYC pairs and the potential to wield immense power over you.” She further warns that a future ‘genetic underclass’ may appear, bolstered by insurance companies using genetic data to calculate premiums, (https://www.npr.org/sections/health-shots/2018/08/07/636026264/genetic-tests-can-hurt-your-chances-of-getting-some-types-of-insurance), companies using genetic data in their employee screening, (https://www.scu.edu/ethics/focus-areas/bioethics/resources/read-my-genes-genetic-screening-in-the-workplace/), pharma companies utilizing your genetic data for research (https://time.com/5349896/23andme-glaxo-smith-kline/), and the utilization of your DNA-KYC pair to charge your relatives with crimes (https://www.11alive.com/article/news/investigations/the-reveal/all-in-the-family-dna-investigation/85-179895c9-1b7e-4e93-8ab4-beae25a44a79). Another major concern is hacking: Genetic companies are already being hacked. (https://www.bloomberg.com/news/articles/2018-06-05/hack-of-dna-website-exposes-data-from-92-million-user-accounts)
It is with that intention that Pandu and her team created Degenics as an initiative to create a blockchain-based, anonymous-first DNA testing platform. In collaboration with Blocksphere (http://blocksphere.id), a blockchain consulting company, Degenics intends to partner with projects in the Polkadot blockchain ecosystem, including KILT Protocol to incorporate credentials for the project’s genetic lab & genetic products ecosystem.
The platform provides a meeting place between genetic testing laboratories and privacy-conscious genetic testing users, and includes sovereignty mechanisms that ensure that genetic test results produced will remain in full possession of each individual, while providing incentive-flow mechanisms for the laboratories.
The startup aims to address the global market for personal genetic testing, which is worth $ 12 billion, and is predicted to grow to $ 21 billion by 2027. (Ref: https://www.globenewswire.com/news-release/2020/10/20/2111178/0/en/Genetic-Testing-Market-to-Hit-21-26-Billion-by-2027-AMR.html)
Degenics is designed to prevent genetic data misuse, privacy violations, security problems, and the practice of selling genetic data without consent. There have been multiple debates about the usage of genetic data by businesses to classify, track, or analyze individuals.
Ms. Pandu, who currently also serves as the CIO of Blocksphere.id and sits in the Supervisory Board of the Indonesian Blockchain Association (http://asosiasiblockchain.co.id), believes that blockchain technology, along with sovereign credentials and decentralized storage, can solve these problems.
Transparency, data immutability, and decentralization allows complete user control in determining genome usage. Degenics allows users to undergo genetic testing without having to provide their name or other personal data. From the user point of view, genetic data that has been preserved on the blockchain is anonymous, sovereign, and can be reused many times.
Advantages for Genetic Labs
Degenics also allows small-scale genetic testing laboratories to join the global genetic testing market in collaboration with other labs.
Due to the Covid-19 pandemic, many labs have upgraded their genetic testing facilities through investment in PCR and next generation sequencing. Degenics allows laboratories to repurpose these facilities to offer personal genetic testing with a “marketplace” paradigm.
Initiation and Call for Action
Degenics was initiated by Ms. Pandu Sastrowardoyo, Jean Daniel Gauthier, Gilang Bhagaskara, and Aaron Ting. It has secured initial investment for the development of a blockchain dApp, launching widely in April. Degenics is also competing in several blockchain application competitions, including the Asian Blockchain & Fintech Competition in January, and ETHDenver in February.
Degenics calls for laboratories to register for the closed beta system test via https://degenics.com. Those seeking to become users of the platform can also register through the same site.
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