Fear of genomics strikes

And he just walked along alone
With his guilt so well concealed
And muttered underneath his breath
“Nothing is revealed”.
– Bob Dylan, The Ballad of Frankie Lee and Judas Priest

This Spring I am teaching an upper-level seminar, “Human biology and society,” for the first time. The course is intended to be a biocultural examination of personal genomics, balancing perspectives on both the creation of genomic knowledge through medical genetics and ancestry research and the consumption of that knowledge in clinical, journalistic and personal contexts. The pedagogical center of the course was intended to be an opportunity for the students to receive their own personal genomic data through services provided by 23andme. Unfortunately, as a little kick from the College on my way out the door to the AAAs, I received notice that my funding proposal was denied:

There also may be legal implications for providing this type of data to students without any of the genetic counseling often associated with this information. (Perhaps the Provost’s Office could put you in contact with the College’s legal team.)

Fear of genomic data is something that John Hawks and Holly Dunsworth have both commented on recently. In a follow-up post, Holly draws the connection between being told she would not grow anymore following a sports injury as an adolescent to being told about one’s personal genomic profile:

But another big part of the personal genomics dilemma is whether to make people worry over nothing (e.g. higher gene-based risk but the condition never ends up presenting). This is the paradox of probabilistic medical data. There was no such uncertainty about my growth plates, and since the news wasn’t about how I could get sick or die, that’s presumably why my doctor did not have to seek my consent to tell me this incidental finding of the radiography.

Personally, I like the analogy of being informed you have tested positive for a virus. For example, if a doctor informs you that your child has tested positive for Varicella (chickenpox), they are telling you something that has permanently changed in your child with uncertain implications for the future development of your child’s health. Once a virus enters our system, it becomes a part of us in a meaningful way. We do not have a great deal of knowledge about what the long-term consequences of such an event are, but in the case of Varicella we know that the virus can re-activate later in life in the form of shingles, a painful and potentially complicated illness. And yet we do not require any particular protections prior to learning this information about ourself or our child. In fact, we do not even actively prevent parents from intentionally exposing their children to Varicella.

As I have said before, there are legitimate reasons to be cautious about how you approach genomic data. The technology associated with it tends to give it an inflated privilege in comparison with other bits of information. Our knowledge about genomics lags behind our data about genomics. In addition to saying something about who you are, it potentially says something about who you might become. But all of these concerns are best dealt with through education, not through ignorance. What better environment to educate, what better environment to develop truly informed consent (or dissent–students would not be required to undergo testing), than a classroom?

The ironic thing is that I can run the course just as I intended with the twist that students would have to pay out of pocket for the opportunity to get their genomic data. Which is of course part of the reason for the course–direct to consumer personal genomics products are publicly available and increasingly widely consumed, with little critical examination of how the process plays out. So my students could do it anyway, with or without my guidance. I would of course have to add an additional lecture on the cost of genomics data and the role that plays in shaping inequalities and self-selection bias within the field, though…