How we Benefit from Getting our Genomes Sequenced
When the first smartphones arrived, few people understood how they would change our reality. Today, our internet-connected mobile device maps our travel, manages our finances, delivers our dinner, and connects us to every corner of human knowledge. In less than a generation, it has become almost an extension of our central nervous system — so indispensable that we can’t imagine leaving home without it to guide us.
We are about to embark on another journey even more important to every individual and to human society. We are entering the age of genomics, an amazing future that will dramatically improve the health outcomes of people across the planet. Soon, we won’t be able to imagine a time when we left home without knowledge of our genome to guide us.
But this future isn’t a generation away. As early as 2020, I believe we will be living in a world where software uses knowledge of our personal genome to guide us, like a health GPS, toward choices that are appropriate for us as individuals. From the foods we choose to eat to the medicines we take to prevent or cure disease, from helping us avoid exposure to environmental risks to eradicating thousands of genetic diseases, genomics will reveal such immense possibilities that it will feel as if we can see and hear for the first time.
As we gain knowledge, genetic matchmaking could enable us to eradicate 7,000 severe Mendelian diseases like sickle cell anemia, hemophilia, Tay-Sachs disease, and cystic fibrosis. Pharmaceutical research and every branch of medicine will benefit from stratifying and classifying people by their individual risks, to create treatment protocols that are specific to that individual. We will aim for more graceful aging, so rather than extending the worst years of our lives we will enjoy many more youthful, productive years.
We have been moving very quickly in terms of our ability to understand and analyze genomes; technology has enabled us to improve our capabilities by ten million-fold in recent years. To realize the potential that genomics offers, however, we need one more key ingredient: the genomes themselves. For individuals to benefit, they need their own genome sequence. For humankind to benefit, scientists need facile access to the genomes of many individuals, (and ideally everyone). We are still far away from achieving this goal, but it’s hard to overstate its value.
I’ve been involved in many efforts to build key components of this future, including the Human Genome Project, the Personal Genome Project, Knome, 23andme, Genos, and Veritas. These projects have experimented with numerous strategies aimed at accelerating progress in genomics. Nevertheless, assembling the critical mass of data needed as the foundation for the genomic age still awaits a fresh approach.
Too few people appreciate the enormous value that knowing their genomes can confer. As with seat belts in the 1960s, not everyone is at risk, but we shouldn’t assume that we are exempt, so the time has come for all of us to “buckle up for safety” and comprehend the revolution in personal genome sequencing.
At the same time, until we offer people the control, privacy and transparency they want around their personal genomic data, none of the advantages are likely to motivate them.
Nebula Genomics, a company of which I’m a co-founder, is building the infrastructure that will solve these problems to accelerate the genomics age.
The issues of transparency and control are addressed by our use of blockchain for delegating data access and recording of transactions. Data privacy is protected through utilization of distributed computing and privacy-enhancing technologies. Enabling individuals to share access to their genomic data in a transparent, controllable and privacy-preserving manner will eliminate an enormous barrier to progress in genomics.
These technologies will incentivize personal genome sequencing and data access sharing. This will create an enormous repository of genomic data that will enable researchers to engage in a free-wheeling, creative, and collaborative exploration of ideas. Think of it as working something like a genomic cross between Wikipedia and Amazon — where anybody that gets an idea can immediately find and buy the information they need to satisfy their curiosity, and then brainstorm with other scientists, all while using data in ways that don’t compromise individual privacy.
A person’s genomic data is valuable to pharma and biotech companies who can use it to develop new drugs and reduce the costs of clinical trials. There’s no reason why individuals shouldn’t be rewarded for the part they play, which is why Nebula will let individuals realize an economic benefit from sharing their information.
The Nebula team and approach I personally trust because of emphasis on ethical issues. We will educate people about uncertainties of genetic testing and risks of psychological adverse effects, we will make sure that people are fairly compensated for their data and not taken advantage of and we will ensure that full transparency is maintained at all times.
We also understand that we cannot do this alone. We are building Nebula in partnership with experts in bioinformatics, blockchain, privacy-enhancing technologies and artificial intelligence. We believe that the convergence of these technologies will create synergies that will propel us into a genomics age.
However, for the humanity to enter the genomics age we need your participation. Perhaps you want to discover if there is something immediately actionable you can do for your own or your family’s health. Perhaps you’re just curious to learn more about the genetic code that defines many aspects of who you are. Perhaps you want to help the world. Whatever the reason, joining us in our journey will accelerate the beginning of the genomics age and a future we will soon find we can’t live without.