De Pape, and that geneticist he worked with, didn\u2019t see this trend slowing down.<\/p>\n
\u201cOn top of it being the blueprint to who you are. On top of it being highly identifiable, it also had an exponentially growing monetary value, which for us was a recipe of catastrophe of people chasing up the data. Which then raised new questions around safety and security of the information and that\u2019s what gave life to Genomes.io,\u201d he said.\u00a0<\/p>\n
De Pape started Genomes.io<\/a>, a DNA testing service that keeps genetic information in a virtual vault using encryption and blockchain technology \u2014 giving only users access to their genetic information, with the option to opt-in to third party research \u2014 and even in some circumstances, getting paid for it.<\/p>\n \u201cOur infrastructure is something that we would like to call a virtual laboratory,\u201d said de Pape.<\/p>\n On the supply side, individuals pay Genomes.io to sequence their DNA, run health and ancestry reports, and securely store their information in a personal \u201cvault\u201d. Customers retain ownership of the genetic information in their vault, which can only be decrypted by the customer.\u00a0<\/p>\n On the demand side, researchers pay the company to access and analyze that encrypted information with the individual\u2019s permission, without having to front all the costs to comply with privacy laws.\u00a0Even when researchers use this data, it is impossible for them to match it with an individual or retain the information they use.<\/p>\n Genomes.io is still just a start up\u2014with only a little over 6000 subscribers.<\/p>\n And that\u2019s a big challenge\u2014because when it comes to DNA samples, their value comes from context and scale.<\/p>\n \u201cYour DNA alone is not worth very much,\u201d said geneticist Ernst Hafen.\u00a0<\/p>\n Hafen learned this the hard way.\u00a0Back in the early 1980s, Hafen was at the forefront in the field of developmental genetics \u2014 studying the DNA of fruit flies as a model for human beings.\u00a0The ultimate goal of his research was to target specific genes shared among fruit flies and humans that could someday be altered to cure diseases or stop cancer in its tracks.\u00a0<\/p>\n He formed a startup in the late 1990s called The Genetics Company.\u00a0<\/p>\n \u201cWe were totally naive,\u201d he said.<\/p>\n Hafen and his cofounders thought they would quickly identify these bad genes and get bought out by a pharmaceutical giant who could take on the expensive grunt work of bringing a therapy to market.\u00a0And while some therapies for cancer and rare diseases would later prove the basic science behind their work, the research wasn\u2019t nearly as fruitful as Hafen hoped.\u00a0It soon became clear that the utility of genetic information alone was quickly running out.\u00a0<\/p>\n \u201cThe DNA alone is not very valuable,\u201d said Hafen. \u201c\u200aYou have to put this in the context of your population. You have to put this in the context of your family history.\u201d<\/p>\n Especially within the context of the rest of your genome \u2014 your specific combination of genes and what that combination results in.\u00a0<\/p>\n \u201cWe\u2019ve been always focusing my entire career to try to pin down something to a single gene, right? Because that\u2019s what we\u2019ve been able to do. But evolution and natural selection has really never cared about single genes,\u201d Hafen said.\u00a0<\/p>\n Instead, natural selection cares about phenotype, or the expressions of your genes. Do you get good sleep? Do you have high cholesterol? This is the kind of information found in your medical records, and without it, Hafen said most people\u2019s DNA likely reveals little to researchers.\u00a0<\/p>\n By 2006, his company was bankrupt. But it taught him a valuable lesson.<\/p>\n That routing out the secret cause of all disease was not something researchers could really narrow down with a simple DNA sample.<\/p>\n Hafen pointed to 23andMe as an example.\u00a0<\/p>\n The DNA testing company quickly ran into financial troubles<\/a>, ultimately leading to it filing for bankruptcy<\/a> earlier this year.\u00a0The move appeared<\/a> to be a clever case of corporate maneuvering rather than a sign of its true value.\u00a0<\/p>\n