You own your genomic data, not the DNA testing company you paid to test your swab sample. So why are you letting them profit from it? Take control of your genomic data, manage it securely and decide if you want to profit from sharing it with researchers to advance medical research. After all, you are your most valuable asset. So why are you giving it away for free?
Watch an ad from those increasingly ubiquitous DNA testing companies and you, like millions of others before you, could quickly be persuaded to request a kit and submit a saliva sample. Who could blame you: they make discovering your genetic makeup and biological fingerprint sound simple and carefree, with nary a mention about who will have access to and control of your most personal information following your submission. For less than $100 they’ll tell you who you are and where you came from. And then? Where that data goes – and with whom it gets shared, or sold to – is muddled in the terms of the agreement.
Handing over your genetic material to a home DNA testing company like 23andMe is not the simply delightful tale of personal discovery they would lead you to believe it is. Among the issues are:
Genomic data is increasingly valuable. Researchers need it and pharmaceutical companies are buying it in mass quantities.. The DNA test kit companies offer users the option to participate in research, voluntarily and uncompensated. For the 80 percent of 23andMe of users who checked the box to provide their DNA for research purposes, they’re discovering that apparently means authorizing the company to sell it, under the guise of partnership, to pharmaceutical giant GSK. No piece of the $300 million, four-year deal will trickle down to the millions of people who have provided the genomic data – the asset behind the deal. It’s estimated that 23andMe has already earned $130 million from DNA data sales prior to their exclusive deal with GSK. That’s genomic data consumers have paid 23andMe to sequence, now being sold for big profits without one penny going to the data owner who is literally paying to be 23andMe’s data supplier.
Dr. David Koepsell, an author, attorney, and ethicist, and his wife, Dr. Vanessa Gonzalez Covarrubias, a genomic scientist researching pharmacogenomics, developed EncrypGen in the belief consumers should be compensated for providing genomic data for commercial purposes. If you’ve used a home DNA test company like AncestryDNA or 23andMe, you can download your raw data, and then request the company delete your account and information and destroy your physical sample.
Once you control your genomic data, whether you share it with researchers or not is up to you. Should you choose to do so, EncrypGen offers a secure, decentralized blockchain network and first-of-its-kind genomic data marketplace for the safe storage and consumer-direct sales of DNA data. Create a free account with EncrypGen and you have the option to limit access to your doctors to help manage your own health, or to share with the researcher community to help advance scientific discovery, and to profit from doing so. EncrypGen puts this source of passive income, generated through optional sales of your genomic data, directly into your DNA-generating hands. For consumers interested in owning what’s theirs and being in control of who can access it, EncrypGen offers the ethical solution in the fast-growing Gene-Chain Genomic Data Marketplace.