The scientific community has advanced leaps and bounds since 2003, when the Human Genome Project announced they’d sequenced a human genome at the cost of $2.7 billion dollars. Today that price tag has dropped to around $1000 and that price is expected to continue to fall,making genetic testing increasingly accessible and affordable, as demonstrated by the millions of people who’ve used home DNA test kits to determine their ancestry.
But the field of genomics is still very young and ripe with potential for medical breakthroughs, scientific discoveries – and plenty of ethical issues. Researchers with the ability to access large and diverse quantities of DNA data could develop cures for diseases and gain insights into humankind. Each one of us possesses an incredibly valuable asset – ourselves – which could help improve the quality of life for our children and our children’s children, with a little passive effort on our parts.
Most of us have strong feelings about how we want our genetic data to be used for the benefit of current and future generations. Being that it’s an industry that works in sensitive material – DNA, the most personal of personal data – genomics is subject to considerable privacy concerns, and it’s essential that individual’s data remain in the control of the owner, and not be unwittingly relinquished to DNA testing companies, who have sold consumers’ genetic data for millions.
These issues led Dr. David Koepsell, an author, attorney, and ethicist, and his wife, Dr. Vanessa Gonzalez Covarrubias, a pharmacogenomic scientist, to launch EncrypGen, and develop the world’s first genomic data marketplace. Within the secure EncrypGen platform, consumers safely store and control their genetic data, with the option to make it available to researchers for the price they themselves set. Unlike commercial DNA test kit companies, who sell their customers’ data without compensating or notifying the DNA data owner where their data has been sent, EncrypGen empowers consumers to decide whether to allow their genomic data to be used by researchers, and to negotiate directly with the those buyers safely and privately. In its one-of-a-kind Gene-Chain market, consumers interact directly with buyers and are compensated for granting access to their data. Researchers can use numerous filters to search through a diverse range of genomic profiles in the marketplace, where access to data is purchased using DNA tokens and other cryptocurrencies, for the genomic data necessary for their work.
Your genomic data is valuable, revealing, and incredibly sensitive. Among the components that make EncrypGen different is the way a DNA data owner’s identifiable information is stripped away from their raw DNA data and phenotypic genomic profile, and that records of all data transactions is stored on the blockchain, a decentralized cryptographically encoded ledger that is essentially unhackable and secure. To buy and sell data, users must join EncrypGen’s private network, further enhancing security.
With EncrypGen you choose whether you only want to share your data with your doctors to manage your own health, or if you will share it with researchers to advance medical research and be compensated for doing so. Getting started is as easy as creating a Gene-Chain profile, uploading your raw data, completing your genomic profile, and selecting whether you want to make your deidentified data available for research.
Create Your Gene-Chain Profile