Clinical OMICS

MAR-APR 2018

Healthcare magazine for research scientists, labs, pathologists, hospitals, cancer centers, physicians and biopharma companies providing news articles, expert interviews and videos about molecular diagnostics in precision medicine

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Page 16 of 51 March/April 2018 Clinical OMICs 15 genomic data. Genetic Alliance's Sharon Terry agrees. "This seemingly discrete part of the system—data sharing—has the power to unleash and upheave the current systems," said Terry, who serves as the nonprofit's president and CEO. Terry is a health advocacy pioneer in her own right. She is a for- mer college chaplain who became a bench scientist when her children were diagnosed with a rare genetic condition in 1994 known as pseudoxanthoma elasticum, or PXE. She is the author of 150 peer-reviewed papers and founded PXE International, in part, to help provide a way for researchers to share data from families affected by the disease. "I hope Luna can really provide a platform to empower people to be the purveyors of their own data, and be rewarded for it," Terry said. She has longed for just the right way to share data. "I think, with the protection of blockchain in the mix, they may just have the right recipe." Still, Terry said her concern is that data-related decisions are dynamic and that must be accounted for. "At Genetic Alliance, work- ing with Private Access, we created a platform to give peo- ple the ability to set granular and dynamic preferences for their health information, and we know the power of such a system. We've long wanted to integrate genomics, so we will be delighted to see this become a reality," she added. Barry said working with groups like Genetic Alliance and other disease advocacy groups will be key to accelerating the rate at which cures are discovered. Terry hopes Luna can achieve true stakeholder engage- ment. "If Luna has engagement with all stakeholders— individuals, families, communities, researchers, investors, clinicians, and so on—and is transparent and authentic regarding the opportunities and challenges, then maybe that can accelerate change that culture-busts and put con- sumer pressure on the system." Terry also had advice for Luna and others enter- ing the blockchain genom- ics space. "Be authentic. Tell the truth, even about motives and profits. Be transparent. Engage us. Don't leave us out. Make this real collaboration. Be bold. Take risks. Peo- ple are dying. It's time to march forward and make a difference." ation of a past transaction would result in it being rejected by oth- er nodes in the network. By some estimates, it would take about a third of the nodes to coordinate a hack. This immutability creates true data provenance, allowing for partnerships based on trust. The de-identification of individual data allows for pseudo-ano- nymity that protects contributor identity. The immutable ledger capability of blockchain is already being demonstrated by cryptocurrency, like Bitcoin. In fact, there are al- ready more than 1,400 kinds of cryptocurrency. Soon, blockchain genomic companies will add to that number. EncrypGen, for ex- ample, will be offering its contributors compensation using DNA Tokens. These payment scenarios are central to the success of blockchain genomic companies. "By incentivizing the disclosure of genomic data and metadata, a new pool of subjects can be made available, and consented even through the blockchain, for basic research," Koepsell said. "By helping to link and track data on searchable ledgers, from a variety of sources and subjects, block- chain of medical records, including genomic data, offer a rich new source of data for searching and buying data." But, blockchain can also be used to create smart contracts, giving users access to specific datasets for set periods of time. "Smart contracts are important for fast data purchases," explained Dennis Grishin, co-founder of Nebula Genomics and a graduate student at Harvard University. "Acquisition of large, standardized genomic datasets is currently very slow, since pharma/biotech companies have to manually aggregate and curate data from multiple sources. Blockchain-enabled smart contracts make it possible for pharma/biotech companies to acquire data from millions of people within seconds." It is access to these large genomic datasets that will enable rational drug design. Nebula and other blockchain genomics companies are counting on that. —Camille Mojica Rey n Sharon Terry, Genetic Alliance CEO karpenko_ilia / Getty Images

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