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The Importance of Genomics – Quick Overview
Ever since the seminal Human Genome Project completed its sequencing of the entire human genome far quicker than expected, the value of genomics has been known and appreciated by scientists.
In recent years, many companies have created an industry and marketplace for the study and exchange of genomic data. However, evolving genomic science, increasing its market value, and educating consumers have not always worked in harmony.
What's in this Guide?
- The Importance of Genomics – Quick Overview
- Who is Nebula Genomics?
- What is the history of Nebula Genomics?
- What does Nebula Genomics do?
- How does Nebula Genomics ensure consumer privacy?
- What products and services does Nebula Genomics offer?
- What process does the consumer go through?
- Conclusion and bigger picture
Disclaimer: Before You Read
It is important to know that your genes are not your destiny. There are various environmental and genetic factors working together to shape you. No matter your genetic makeup, maintain ideal blood pressure and glucose levels, avoid harmful alcohol intake, exercise regularly, get regular sleep. And for goodness sake, don't smoke.
Genetics is a quickly changing topic. Read More...
The multiple barriers to entry for consumers, as well as privacy concerns, have constrained participation; and the limited data sets have made it more difficult for researchers to use genomic data to its full potential.
Nebula Genomics and its co-founder Professor George Church entered the scene as a way to springload the genomics revolution by connecting consumers and researchers for the common purpose of pushing the boundaries of science, medicine, and healthcare. The underlying goal is to understand severe diseases--including sickle cell anemia, hemophilia, Tay-Sachs disease, cystic fibrosis and thousands of others--and to use genetic information to create new medicines to treat and cure those diseases.
This requires a symbiotic marketplace of consumers, researchers, and biotech companies all working together to grow the industry. Nebula Genomics has created the platform by which to foster this new marketplace, and it is as equitable as it is lucrative.
Who is Nebula Genomics?
With offices in both Boston and San Francisco, Nebula Genomics is the creation of award-winning genomics pioneer Prof. George Church, and Harvard graduates Dennis Grishin and entrepreneur Kamal Obbad.
Grishin serves as the company’s chief scientific officer while Obbad is the current CEO.
Nebula is backed by the support of nearly a dozen leading venture capital firms and partnerships with the greatest minds in bioinformatics, blockchain, cryptography, and artificial intelligence. The company uses next-generation technology to create “a storage, sharing, and computing platform for biomedical big data.”
Distinguishing itself from other commercial genome companies, Nebula’s sequencing service is affordable and protects the privacy of consumers.
What is the history of Nebula Genomics?
Dr. Church, co-founder of Nebula Genomics, has a long history of involvement in the evolution of genomic science.
He was previously involved in the Human Genome Project, the Personal Genome Project, Knome, Genos, and Veritas. This total immersion in the field fostered Church’s strong belief that the coming revolution of personal genomics will rival the impact of smartphones except in the overlapping realms of healthcare, medicine, and science.
Because Dr. Church saw the rise of genomics firsthand, he is in a unique position to diagnose the current flaws in commercial, privatized applications of genetic sequencing and genomic technology. Specifically, Church realized that anxiety over privacy was a significant barrier to widespread adoption.
He also realized that if biotech corporations were going to reap vast financial rewards by harvesting and selling peoples’ individual genomic sequences and genetic information, those individuals deserved compensation too.
Privacy, transparency, and financial compensation became the ideological pillars propping up Nebula Genomics as a startup. Operating on the conviction that genomic research and genetic discoveries will allow scientists to cure and eliminate thousands of severe diseases, Church and his co-founders developed a platform, business model, and mission statement that appealed to not only investors but field experts wishing to make a difference in the world.
What does Nebula Genomics do?
Put simply, Nebula Genomics offers a secure, decentralized marketplace for the genomic data.
This is a two-pronged endeavor, servicing and incentivizing participation from both consumers and researchers. As a result of its cutting edge blockchain technology, Nebula Genomics has essentially eliminated the middleman between these two constituents, making genomic sequencing affordable for average people and making their genomic data accessible to researchers.
Critically, the process ensures that consumers control the process by which their data is shared and used.
Wired magazine called Nebula Genomics a “blockchain-based genetic marketplace.” Church himself once described his company as a “genomic cross between Wikipedia and Amazon.” However you describe the company, there’s no arguing that Nebula is a change agent, representing a sea change in the relationship between consumers and the biotech industry.
From the standpoint of an everyday person, Nebula’s services make it affordable--and, in some cases, even financially lucrative--to better understand one’s genetic makeup and history. Though the financial cost of genomic sequencing for consumers has steadily decreased in the last two decades, for many it remains prohibitive.
Nebula changes that, reducing the cost from thousands down to only hundreds or less.
Other factors traditionally discouraging participation include privacy fears and the limitations of the information offered. Nebula’s proprietary, next-generation sequencing technology vastly surpasses its competitors in terms of privacy and the scope of its analysis.
Some genomic sequencing services have not lived up to their promise when it comes to identifying diseases and potential health risks. Approximately two percent of customers who purchase a genetic analysis service learn something that substantially assists them in treating a previously unknown health issue.
This is a statistic Nebula will change due to the strength of its genomic technology.
By effectively incentivizing consumer participation, Nebula creates the foundation for a buoyant marketplace that benefits not only the consumers but the researchers seeking to learn more about diseases and develop drugs to treat them. This expanded genomic library creates a market incentive for pharmaceutical and biotech companies and biobanks.
Nebula Genomics uses its scientific tools to better serve consumers, who in turn help expand what was once a cottage industry into a thriving economic engine pushing medicine and healthcare into a new age of innovation.
How does Nebula Genomics ensure consumer privacy?
Nebula Genomics uses a constellation of state-of-the-art technologies, including blockchain and cryptography, to ensure its platform is secure and transparent and to ensure that customer data is encrypted.
This decentralized system - unprecedented in the field of consumer genomic services - utilizes standardized data sets, smart contracts and unused storage across a distributed network. Decentralization, cryptography, and blockchain are the keys to a genomic revolution that will advance science and lead us to the ‘holy grail’ of modern healthcare: an efficient industry of personalized medicine.
But how exactly does Nebula ensure privacy in a world full of information leaks, hacking, and nefarious data miners?
Blockchain is the foundational technology underlying cryptocurrencies such as Bitcoin. The reason it is hailed as revolutionary is because of its peer-to-peer distributed network and cryptographic hash that makes it both decentralized and immune to modification.
No single authority can control a blockchain and no amount of hackers can tarnish its ledger. Because of this security, over forty major industries have adopted blockchain technology in the last decade, including banking, hedge funds, infrastructure, cloud computing, IoT (Internet of Things), energy management, and dozens of others.
Healthcare institutions and pharmaceutical companies are among these adopters. For healthcare providers, blockchain allows hospitals, payers, and other third-parties to access information and private networks without jeopardizing data security.
Two of blockchain’s foundational security methods are encryption and cryptography. Together, they can be utilized to ensure that data sharing is transparent and that a user maintains full control over his or her data.
Blockchain also creates a more efficient pipeline between consumers and researchers. This is because no intermediary is required, which reduces the time and money expended on negotiations and contracts.
Nebula Genomics’ blockchain system uses two different forms of encryption--re-encryption by proxy and homomorphic encryption--which, according to Church, “allow [Nebula] to keep [its] cake and eat it too, when it comes to data use and data privacy.” Based on the Unlynx system--a “decentralized system for privacy-conscious data sharing”--developed by EPFL, a prestigious European science and technology institute, these two systems allow data owners to encrypt and securely share their data with buyers.
Multi-party access control and encryption with private keys mean that a consumer knows who is trying to access their data and has the power to grant or block access.
Privacy and transparency are the cornerstones of Nebula’s business model. In an age of predatory data mining, privacy violations, and genetic data theft, this ethos resonates with consumers and encourages participation.
What products and services does Nebula Genomics offer?
The products and services offered by Nebula Genomics center around genetic material - ancestry, inherited traits, and disease risks - and understanding one’s own genomic profile. Unlike other companies, Nebula extends to customers the chance to see one’s entire genome.
Nebula Genomics offers a $99 full genome sequencing that allows customers to essentially receive a comprehensive “blueprint” of their genetic identity. This blueprint provides customers the opportunity to understand their ancestry, genetic makeup, potential health risks and disease vulnerability.
If you’re at risk for a severe disease because of your family’s genetic history, this genomic sequencing allows you to identify this risk early and receive treatment.
Even if treatments for your hypothetical affliction do not currently exist, understanding your genetic makeup allows you to prepare for the future and potentially extend your life. Nebula’s advanced model provides approximately 2,000 times more genomic data than other leading services.
What process does the consumer go through?
Nebula customers submit information about their health to create a profile.
Once they create this profile, they can enter the marketplace with the assurance that their data is encrypted and private. Data buyers, including researchers, biotech scientists, and pharmaceutical companies pursuing certain medical records and profiles, have the opportunity to purchase specific data sets.
The consumer, for the first time, can offer this data securely while receiving compensation.
The $99 package is called the “Low-pass Whole Genome Sequencing.” There are three steps to this process:
1) you buy the genetic sequencing kit, receive it in the mail, provide a saliva sample (your purchase includes a saliva collection kit), mail it back, and wait for the results
2) you receive your genetic results and begin the process of understanding your genome, ancestry and inherited traits, including “disease risks, carrier status, adverse medication responses…physical appearance, personality, athleticism, nutrition, sleep, and more”
3) you have the option of keeping your data entirely private or selling it to researchers in exchange for receiving new analytical information about your genome.
The Nebula platform allows you to scale up and access specific information about the research studies toward which your data will contribute. You also have the ability to earn money from your data.
Customers with unusual traits or diseases may be of particular interest to researchers and biotech companies. Church explained in an interview that customers can earn "probably anywhere from $10 to $10,000, if you're some exceptional research resource."
Church also notes three additional ways to earn credits on the platform: “by completing our surveys, by referring friends to sign up for our platform, or by importing data from another genetic testing service.”
Conclusion and bigger picture
Nebula Genomics marks nothing less than a revolution in the commercial genomic sequencing industry.
More than that, however, the company’s business model may have a significant effect on the biotech industry. The expected chain reaction is as follows: reduced sequencing cost and increased consumer privacy will incentivize exponential participation; the expanding repository of genomic material will jettison new research, the development of new drugs, clinical applications, and advances in medical treatment.
There are approximately 7,000 severe Medelian diseases that could be eradicated by these new advances.
Customers who purchase their genomic sequencing via Nebula participate in a subversion of the typical economic model, says co-founder Church. The data owner is in control and is paid by biotech companies, rather than being unknowingly exploited.
Biotech companies and pharma executives have no way of viewing the data or the identity of the consumer until they offer payment. Once they make an offer through the encrypted blockchain system, the data owner may be able to receive additional genomic sequencing and insights, particularly if their profile is deemed crucial in helping to advance science or medical research.
Ultimately, while the use of blockchain to protect consumer privacy and provide transparency is not new, the integration of this revolutionary technology into the field of genomics marks a new phase of scientific research. We are likely to see echos and reiterations of this decentralized business model in other fields of scientific research, which could have a profound effect on the advancement of personalized healthcare, hospital treatment, disease prevention, and medical technology.
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