Dec 11 2013
Imagine someone at the time of Gutenberg seeing his converted wine press capable of printing books. “Who needs all these books? No one can read them, anyway,” they might think.
The full impact of the the literacy/literature spiral this invention triggered would have been impossible to predict. The bible would be translated into “vulgar” languages, no longer requiring the translation (and interpretation) services of the priestly class to control the flow of information to the lay people.
This remarkable upward spiral of knowledge was a chicken-and-the egg situation. It required literature for people to read, but it required literate people to produce the literature. It played a key role in the Age of Enlightenment as well as the Scientific Revolution.
Since his invention, millions of books have been printed. For better or worse, from Shakespeare to Hitler, many changed the world. Many books were redundant, many were just plain wrong, but the overarching principle of freedom of the press became a hallmark of what many consider a civilized society today.
Fast forward 550 years to today’s genomic revolution. Like the printing press, we are witnessing a new technology that is presenting us vast potential. And like the book, we are facing a new literacy/literature spiral. And we are facing a priestly class that seeks to intersperse themselves between our information and our use of it.
The notion that a federal agency can control information of our genes, and assign professional “gatekeepers” to control and interpret this information, is absurd.
Jonas Salk pointed out that we are the first generations of the first species to have evolved to understand our own evolutionary makeup. In Survival of the Wisest, he points to the need for a new understanding of our role in evolution, what he called conscious evolution.
I don’t think that this wisdom is going to come from federal agencies. Nor do I think that depriving people’s access to their own genetic information is going to advance the cause of science, or continue the principles of the Age of Enlightenment that have contributed so much to the advance of civilization.
We need to embrace a new life science literature/literacy spiral, not inhibit it by attempting to control it by an information priestly class. Medicine today is largely “medicine by body part.” Physicians may deal with Ears, Nose, and Throat, but Dentists deal with Teeth, an entirely different academic discipline, using a different insurance system. As we discover the underlying genetic similarities of cancer, for example, we may find that the hierarchies with which we characterize them (e.b. some colon and breast cancers being nearly the same). These hierarchical distinctions are not just nomenclatural, but also the source of many of the power struggles in the various professional associations, billing codes, and financial reimbursement.
Entangling our future medical knowledge with the perversity today’s bewildering political, economic, and administrative hierarchies is not going to advance our knowledge, but rather exacerbate an already complex situation.
Another huge issue is the presumption that reading genetic information is a medical issue, an FDA “test” to be controlled as such. But medicine today is largely a “fixit” enterprise, fixing what’s wrong. We do knock-out studies, deleting a gene from a mouse, and then looking to see what went wrong. This is a bit like Martians trying to understand a 1950′s television by removing vacuum tubes. Noticing that the set squealed after a certain tube was removed, they claim discovery of the “anti-squeal” tube. This is a highly replicable result, so it must be scientifically valid.
Our life science literature/literacy spiral must move beyond today’s “negate the negative” assumptions. Fixing everything that is wrong with a living system does not necessarily make it right. Trying to put a tail back on a cat is likely to cause more harm than just letting the cat adapt to become a tailless cat. Understanding the cats resilience and adaptation mechanisms is a a far more complex form of information – and one that is critical to our full understanding of life sciences. Regulating and restricting the flow of genetic information in terms of today’s perversely incentivized disease model is a huge step backward in advancing our understanding of ourselves.