A philosopher/researcher is developing a blockchain solution to provide privacy for genomic data, which has been a problem for genomic research, but at the same time grant access to anonymized genomic data for medical research.
David Koepsell, J.D., Ph.D., a philosopher and author, has launched a company that uses blockchain technology to allow genomic data to be stored and kept private, but still allow for scientists access to the data they need for genomic research. Koepsell believes blockchain technology will bring a revolution to genomic science, which is bringing major medical benefits . according to Forbes.
Genomic testing allows patients to be treated with more precision. Treatment can be tailored to a patient’s individual makeup. It also raises questions about who should have access to genomic data.
One problem is that there is no clear owner of genomic data. Such data has been determined to be unpatentable since it lacks clear ownership.
The only definitive way to control one’s genomic data is not to be tested, which defeats the purpose of genomic testing.
The American Civil Liberties Union and the Public Patent Foundation in 2009 sued Myriad Corporation based on its patents that would have allowed the company to essentially monopolize testing for ovarian and breast cancer.
The U.S. and Australian Supreme Courts invalidated the patents on the grounds that they were not properly applied to natural occurrences rather than inventions.
Koepsell, the author of a 2009 book, “Who Owns You,” has explored a question that the Myriad case did not resolve: Since individuals do not legally own their genomic data, how can the privacy and security of personal genomic data be best ensured?
Koepsell and a collaborator, Dr. Vanessa Gonzalez, launched a software company to address the privacy and security issues using blockchain technology.
Koepsell told Forbes he decided to leave academic work to start a software company. He said he was thrust into the world of policy as a result of the lawsuit being filed over an issue he addressed in his book.
When the U.S. Supreme Court resolved the non-patentability of genes, a number of issues remained unresolved that could hinder genomic science. During his research, Koepsell discovered a solution that did not depend on policy, a solution that could be solved with blockchain technology.
Koepsell and his team found seed money, hired a developer and began developing the solution. They formed a company, Encrypgen, LLC.
Blockchain technology integrates the values of ownership, privacy and security, Koepsell said. This is why economist Hernando de Soto embraced blockchain solutions for tracking land titles, he said. These values are also needed for protecting genomic data, but without blocking scientific progress.
Genomic data is highly sensitive, Koepsell said. Most people do not know that their DNA contains information about their life expectancy, their proclivity to illnesses, their ethnic ancestry, their expected intelligence and possibly their political inclinations.
Genomic data could be misused by employers, businesses and governments. A person could be denied health insurance since they carry genes linked to breast cancer, for example.
Anonymized genomic data, however, is critical for scientific progress. Personalized medicine only became possible by analyzing genomic data from thousands of donors. Such data has helped create better treatments for specific groups of people. Such benefits can also cut costs and improve efficiency.
A person could store their genomic data on the “Gene-Chain” free of charge, where it would be unhackable and encrypted. The owner could provide a time-limited key to their doctor.
Scientists would have access to the metadata, such as age, ethnicity and gender. Their searches would reveal nothing personal about an individual donor. Institutes could purchase licenses to store data without worrying about ethics.
A researcher could also request data from a donor, who could decide whether or not to release certain data. Blockchain technology can conceal a person’s genomes from prying eyes while at the same time allow scientists to gather anonymized information about large populations.
Koepsell said the blockchain will bring a revolution in genomic science and provide data with greater protection.
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