DNA, Dollars, and Dilemmas

On the surface, it seems somewhat fair — a quid pro quo for our data. We can get something useful in exchange for things like driving directions or the ability to connect and network on a social media platform. And, of course, this narrative is quickly peppered with terms like depersonalized, anonymous, and compliance, to help soften the firm grasp of companies that become tachycardic at the prospect of your owning your elevated heart rate data.

Your data is worth money, a lot of money. And while it might not be immediately apparent how or why companies are mining your data, it’s important to understand that it happens. A lot. You probably agree to it happening every time you click “I Agree” on a website’s Terms and Conditions page. But what exactly are you agreeing to?

Most people assume that when they’re using a free service like Facebook, Google, or Instagram, the company is making money off of ads. And while that is true to some extent, these companies are also making money by selling your data. That’s right, your data is being bought and sold regularly without your knowledge or overt consent. Interestingly, healthcare data is among the most valuable data in the world. It’s been suggested that health data may be worth fifty times as much as personal financial data. And the richest part of your data set might be your DNA.

Ultima Genomics, a new player in the genomic sequence business, announced $600 million in funding and a $100 cost for full genomic sequencing. Here’s the wording from their press release.

Today Ultima Genomics emerged from stealth mode with a new high-throughput, low-cost sequencing platform that delivers the $100 genome. Ultima’s goal is to unleash a new era in genomics-driven research and healthcare, and it has secured approximately $600 million in backing from leading investors who share this vision.

Let’s talk about the one hundred bucks, but first, add a few zeros. The original approximated cost to sequence the entire human genome was about $1,000,000,000. Over time, these costs have followed almost an exponential path downward. Before these latest technological and pricing innovations from Ultima, the going price for a full analysis was about $1,000. The new $100 cost sets a trajectory that raises a critical question.

Will the cost to sequence a full human genome go to zero?

This is not a frivolous question. The implications are staggering. If the cost of sequencing a full genome plummets to zero, it will open up a new era of personalized medicine and health care. It will also have profound implications for research and our understanding of the human body. And even at $100, the application of genomics to vast areas — from agriculture to medicine — is transformative.

But there is another side to this equation. As genomics becomes more ubiquitous, so does the collection and analysis of our DNA. And with that comes a new set of ethical considerations. When we sequence our DNA, we are essentially giving away our most personal information. This information can be used to diagnose disease, predict disease risk, and even determine paternity. It can also be used to make decisions about insurance coverage and employment. Further, the claims of “depersonalization and deidentification” become much more opaque as these data are in fact, self-identifying.

Call it a Faustian bargain, Pandora’s Box or even the myth of Icarus, our DNA offers secrets to science and business that is becoming increasingly difficult to resist. And that irresistibility may provide us all with critical insights to the path that lies ahead.