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Press release: Nebula Genomics Launches Platform Offering Free DNA Sequencing and Data Privacy Protection

By ethicalmuch_admin | 17 November 18 11:57am | Uncategorised

Consumers Can Contribute to Medical Breakthroughs and Get Rewarded for Sharing Health and Genomic Data While Maintaining Privacy and Control

San Francisco, CA and Boston, MA – November 15, 2018 – ​​Nebula Genomics today announced a first in consumer genetics: the ability for individuals to have their ​full​ genome sequenced, for free, through its new platform, ​Nebula.org​. This platform connects consumers with researchers to help advance biomedical research. Anyone can use the Nebula platform to share their health and genomic information with the research community, and be compensated for doing so. Importantly, the platform’s design protects the privacy of that information and gives individuals ownership and complete control over how their data is shared and used.

Consumers who are interested in getting sequenced for free can answer health-related questions on the site, which can earn them Nebula credits. These credits can be redeemed for sequencing their genome and for a variety of other offerings. Nebula Genomics is working with various research institutions to pay for the sequencing of users who contribute data. Alternatively, consumers who’d rather get sequenced immediately have the option to purchase a DNA kit for $99 directly through Nebula Genomics, which will provide them with an analysis of their ancestry and inherited traits.

Unlike most other personal genomics companies, Nebula offers next-generation sequencing technology that reads out the whole genome of an individual. This generates thousands of times more genomic data than the technologies that are commonly used by other personal genomics companies. As a result, Nebula will provide consumers a more accurate interpretation of their genetic information, and will give researchers access to more comprehensive genomic datasets that are far more valuable in identifying the genes that cause certain diseases and discovering new medicines.

“For far too long, companies offering genetic analysis have asked consumers to simply give away their valuable genomic data, and then have sold it without their knowledge,” said Kamal Obbad, CEO & Co-founder of Nebula Genomics. “Researchers have been frustrated, too, by the lack of streamlined access to the genomic and health data they need to advance science. Nebula’s platform gives consumers back the rights to their genomic data and gives researchers a single place to find all the data they need to make medical breakthroughs.”

Nebula’s design overcomes one of the key obstacles to more widespread sharing of genomic information: Trust. Nebula’s platform uses blockchain and encryption-based privacy-enhancing technologies to give individuals the complete ability to transparently control who has access to their data, and ensures that their data remains private even while it is being shared. Unlike with most other consumer DNA kits on the market, Nebula users will be able to know who is requesting access to their data — and for what purpose — and can agree to or decline that request.
Nebula also will never have access to any consumer health data, regardless of where it is stored. Nebula’s encryption technology prevents the company from having all the keys necessary to decrypt user data, reinforcing the consumer’s privacy and control.

“We want consumers to feel confident about sharing their genomic data in a fair and transparent ecosystem,” said Dennis Grishin, Chief Scientific Officer and Co-founder of Nebula Genomics. “By offering free DNA sequencing and ensuring data protection, we are both asking and encouraging consumers to sign up to join a community that is helping scientists conduct transformative research that will lead to important medical breakthroughs.”

Consumers Compensated for Sharing Their Data
Because Nebula was designed so that consumers will own their genomic data, the platform will also function as a genomic and health information marketplace. Consumers will be compensated for answering survey questions about their health and providing access to their genomic data, which is extremely valuable for developing innovative new drugs. This new marketplace will allow consumers to share in the wealth that biopharma companies generate from this data.
“By taking an entirely new approach to data ownership, transparency, and informed consent, we are going to change the way that genetic information is shared,” Obbad said.

Nebula Genomics is a personal genomics company with a mission to build a large and trustworthy genomic and health data marketplace for consumers, researchers and the medical community. Using blockchain, Nebula ensures that consumers maintain anonymity and control of their data while being compensated for its use. The Nebula marketplace will aggregate a critical mass of genetic information that researchers can analyze in order to accelerate drug development, streamline clinical trials, and usher in the era of truly personalized medicine. The company was founded by Harvard genomics pioneer George Church, along with Harvard researchers Dennis Grishin and Kamal Obbad. Founded in 2017, Nebula Genomics has offices in San Francisco, CA and Boston, MA and is backed by investors including Khosla Ventures, Arch Venture Partners, Fenbushi Capital, Mayfield, F-Prime Capital Partners, Great Point Ventures, Windham Venture Partners, Hemi Ventures, Mirae Asset, Hikma Ventures and Heartbeat Labs. For more information, follow @NebulaGenomics on ​Twitter​ and​ ​Facebook​ or visit​ www.nebula.org​​

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