Fear of genomics

NPR (at least my local NPR affiliates) has been running a series on low-cost genomic sequencing and its potentials–good and bad–for several days now. The series has focused on a variety of issues, but has regularly come back to the question of whether or not there is something to fear in personal genomics. Here is an example from a recent story:

And even when it’s right, it could open up a Pandora’s box.

“You know, it’s a seductive thought to think, well, you know, we might as well know about stuff,” said James Evans of the University of North Carolina, Chapel Hill, and the American College of Medical Genetics.

But for most people, sequencing will be just a big waste of time and money, he said.

“We don’t just get MRIs on everybody who comes to the doctor’s office. Not only would that be ridiculously expensive and uninformative,” says Evans, “it could also lead to all kinds of false positives that would be highly problematic for those people.”

Holly Dunsworth, writing at The Mermaid’s Tale, is not impressed:

It follows the recipe. (1) Start with a headline that demonstrates controversy. (2) Present a story about science-related news (which does not require controversy to be news). (3) End it ever-so briefly and vaguely with dissent, doubt, outcry or warning.

Much of the questions raised by the NPR story I link above are questions about a lack of knowledge. We don’t know exactly what information from the genome indicates, we don’t know the exact mechanisms oftentimes by which specific genetic variants impact specific phenotypic outcomes, and we don’t know what potential negative consequences might emerge from access to new knowledge. What all these questions have in common is a lack of knowledge. The answer to them should not be to shun the pursuit of this knowledge, but instead to embrace such a pursuit. There is a lot of information about us contained within our genome, and information that is potentially useful across a host of real-world issues. As I attempted to indicate in my September Anthropology News column, we should not shy away from personal genomics because of a fear or what it might reveal about each of us as an individual.

Being open to personal genomics does not necessitate being naive about the discipline, however. One of the legitimate concerns that personal genomics brings up is the potential for it to create interactions with extreme degrees of differential knowledge. Understanding the relationship between your genome and your health is not intuitive. It requires a certain degree of knowledge to know how to even approach such information. Holly’s comments about working with personal genetic data and undergraduate students get at this point indirectly:

After last spring, where over 100 students in both Human Variation and also the introductory level Human Origins (Anthropology 201) did 23andMe, not one student got “totally freaked out.” This along with much of my experience with genotyping and undergraduates indicates that, with education and with understanding, personal genomics does not induce fear. Not coincidentally, participating in personal genomics aides in education. [emphasis added]

People feel uneasy about mechanics because there is typically a large differential in knowledge about the internal workings of a combustion engine and the surrounding vehicle between a customer and the mechanic. The same potential power dynamic exists in direct-to-consumer genetic materials. The solution to fixing your car is not to avoid the mechanic, though, but instead to provide some regulatory oversight to the industry and investigate the reputation of various mechanic outfits. Of course, you don’t need to be hearing a strange clicking sound coming from your rear when you accelerate to be curious about your personal genome.