Earlier this month, we blogged about a conference around the future of the blockchain and the law. There’s also a possibility that the blockchain will affect another area: the privacy and security of genomic data. A recent Forbes report explores the intersection of these two technologies.
While genomic testing can contribute to “tailor-made” treatments to a patient’s genetic makeup, that information is also vulnerable. For example, Washington policymakers have expressed interest in making that information available to employers.
Forbes points out another twist, if you will, in the matter.
“Complicating the privacy issue is the fact that there’s no clear legal owner of genomic data; that data was found to be unpatentable and, because it lacks authorship or a creator (legally), cannot be copyrighted.”
The report includes an interview with philosopher and “Who Owns You” author, David Koepsell. His work foreshadowed this copyright dilemma when the ACLU and other parties sued the Myriad Corporation over its patents on BRCA genes, which determine breast and ovarian cancer susceptibility. Eventually, Myriad lost these patents in both U.S. and Australian Supreme Courts because “the patents were improperly applied to naturally occurring things rather than inventions.” But the question that remains, and which Koepsell is considering in his work, if individuals don’t legally “own” their genomic data, how can its security and privacy be ensured?
Koepsell asserts that the blockchain can offer a safe place for individuals to store their genomic data.
“On the Gene-Chain, your data is virtually unhackable, encrypted, and you can provide a time-limited key to your doctor or others with whom you want or need to share the data. You can also choose exactly what part of your genome to share. We can also track misuse of that data, which has a unique signature.”
Koepsell states that the blockchain could also offer scientists access to metadata (age, ethnicity, gender, etc.) and still allow the subjects/donors to maintain anonymity. If scientists want to pursue more research with the donors, they can also contact them via the blockchain.
Forbes asked the author if the law answered questions around gene patents, couldn’t it also provide protections for genomic data? No, says Koepsell, because “until the technology is adequate to the task given the risks, we cannot expect the law alone to properly protect people.”