Why you should share your genetic profile

Fifteen years ago, a scrappy team of computer geeks at UC Santa Cruz assembled the first complete draft of the human genome from DNA data generated by a global consortium, giving humanity its first glimpse of our genetic heritage.

And then we did something the private corporation competing with us never would have done: We posted the draft on the Web, ensuring that our genetic blueprint would be free and accessible to everyone, forever.

This opened the door to global research and countless scientific breakthroughs that are transforming medicine. Today, every major medical center offers DNA sequencing tests; we can sequence anybody’s genome for about $1,000.

This is a game-changer. The era of precision medicine is upon us.

Consider the 21st century war on cancer: When a patient is diagnosed with cancer, her doctor compares her tumor’s genome to those in an enormous worldwide network of shared genomes, seeking matches that point to the best treatment strategies and the best outcomes.

This is not fantasy. UC Santa Cruz already manages more than 1 quadrillion bytes of cancer-genomics data — the world’s largest collection of genomic data from the most diverse collection of cancerous tumors ever assembled for general scientific use.

A multinational consortium of children’s hospitals is enabling members to compare each child’s cancer genome to this huge set of pediatric and adult cancer genomes. This is how we will decode cancer. It’s how we will tailor treatment to individual patients. It will save lives.

But this will come to pass only if we work together.

Competition among medical centers can make them reluctant to share data with each other. There are ethical and privacy considerations for patients. We need to overcome these challenges, build a secure network of data-sharing, and usher in the long-sought era of precision medicine.

Patients can help by asking their doctors and medical centers to share their genetic profiles — securely — with researchers around the world through the Global Alliance for Genomics and Health. The alliance has mobilized hundreds of institutions worldwide to build the definitive open-source Internet protocols for sharing genomic data. Our goal is to speed doctors’ ability to tailor treatments to the genetic profiles of individual patients.

The power of this data network will be only as strong as it is vast. The bigger the pool of samples, the greater the likelihood of finding molecular matches that benefit patients, as well as patterns that shed new light on how normal cells become malignant. Genomics can help us decode diseases from asthma and arthritis to Parkinson’s and schizophrenia.

Fifteen years ago, when we released that first sequence of our genome, humanity’s genetic signature became open-source. I remember the feelings of awe and trepidation I experienced that day, realizing that we were passing through a portal through which we could never return, uncertain exactly what it would mean for humanity.

Today, the meaning is clear. We are finally realizing the promise of genomics-driven precision medicine.