In a recent U-T San Diego article about one of the city’s biotech powerhouses, Illumina, there was a lengthy discussion about a new platform for sequencing the human genome.
Illumina had finally whittled the price below the long-standing $1,000 barrier, putting the company front and center in the conversation about the future of genetic research and its power in diagnosing and treating disease.
There is so much excitement about genome sequencing that many are heralding it as the single most important discovery of the modern scientific era, and wonder if this will finally be the cure for cancer.
While this is indeed an exciting time for cancer treatment, it’s premature to be touting genomics as the miraculous pathway to a cure. If we were to picture the road to a cure, it would look much more like the Los Angeles freeway system than a one-lane highway somewhere in America’s heartland. There are so many issues, both technical and ethical that remain to be solved, it is overwhelming even to catalog them.
This was brought home in a recent talk by biotech entrepreneur Patrick Soon-Shiong. Soon-Shiong extended the discussion of the fight on cancer to include the millions of different proteins that interact with the genes in each human being. He noted the need for computing systems that could effectively and efficiently process so much interaction, and data-sharing systems to circulate it. Finally, he said, we will need strategies for incorporating this information into clinical settings so that doctors and patients can actually use it.
The point of all this is to say there is much more than genomics that will go into curing cancer. In fact, our fight against cancer is even more complex than the science itself.
Cancer, as Siddhartha Mukherjee’s book “The Emperor of All Maladies” suggests, is not so much a static disease that is “out there” somewhere, but a kind of mirror that reflects many of the strengths, weaknesses, preoccupations and blind spots of our whole culture. We cannot, by this logic, cure cancer without also taking a deep, hard look at ourselves and asking some very hard questions.
The road to a cure is paved with questions about our relationships to science, governments, “big business” and ultimately one another. We must make decisions about ownership of our genetic information and the level of privacy we expect.
Do we feel comfortable with any agency or government having the right to collect and share our biological information? Who should have the right to make decisions about how an individual’s biological information is used? The donor, the hospital, the insurance companies that pay for the sample, or the agency maintaining the database?
Sharing information internationally also creates ethical challenges. When my genomic information travels to another country, with different attitudes and relationships to ownership and privacy, whose standards apply? Do we have the right to impose our standards on other countries, or vice versa?
The list of obstacles and concerns is long, and the reality of a cure for cancer is distant at best. There is some danger in becoming too excited about each new breakthrough.
But it’s also sometimes too easy to back off and say, “too hard,” or “too risky.” Nearly everyone can say “no.” But it’s much more intriguing and powerful to size up an issue, understand its benefits and its challenges, and then ask, “How?”
This op-ed is part of a collaboration with the Emperor of All Maladies Project, exploring cancer as it exists both publicly and privately. This is the third Common Read project organized by a science and education alliance including Grossmont College, Point Loma Nazarene University, San Diego State University, University of California San Diego, the Reuben H. Fleet Science Center, Sharp Health Care and the Center for Ethics in Science and Technology. Learn more here.
Tate Hurvitz is an associate professor of English at Grossmont College and a project coordinator for the San Diego Center for Ethics in Science and Technology. He lives in Chula Vista. Hurvitz’s commentary has been edited for clarity. See anything in there we should fact check? Tell us what to check out here. Want to respond? Submit a commentary.