I have put 1 million markers (from a combination of Illumina SNP-chips) of mine online. I’m also going to put my sequence online when I get it done. Why? What do I gain from this? Hopefully I don’t gain anything from it. By this, I mean that the only major information that is actionable in a life altering sense is likely to be disease related. Though I’ve been contacted about possible loss of function mutations through imputation, so far my genotype has not illuminated any more risk susceptibilities. Rather, I am trying to make it clear by my openness that your genetic information has more power when pooled together with that of others, and small one step in creating that vast pool of information is to demystifying sharing it, and practicing what you (that is, me) preach. My soul is not in my genes, and certainly my genotype reflects me with far less obvious fidelity than a photograph would. By this, I mean that there are many traits that one could predict about me, but many one would be at a loss to predict.
To me this is a coordination problem. The more genetic and phenotypic information researchers and analytic software have, the more correlational juice one might squeeze out of the vast cloud of data. But the temptation here will be to free ride, and keep one’s own genome private, while one benefit from the openness of others (to some extent, this is what happens when you have medical research subjects, whose results are used for the gain of the public, which pays, but does not participate). I can see why someone would not want to divulge their health information. A list of venereal diseases may be a source of shame, whether you find it justifiable or not. There is a reasonable ground for privacy, because communicable diseases are reflective often of life choices one has made. When it comes to genes if you have a major loss of function mutation or a disease which is likely to develop at some point before your death (e.g., early onset Alzheimer’s disease), then there are clear grounds for keeping that information close to the vest. But you don’t bear any responsibility for your genotype, nor do you gain any merit or demerit from your genotype. It is a contingent accident of history, and the information is not who you are, it is just the loading of the die you were given by dint of your birth.
This not just about genetics. It is about life. We already have many private firms, from credit rating agencies to Facebook, to marketers, to the government, monitoring our movement, and attempting to anticipate our choices. One can opt out from this information ecology, but unless one goes off the grid and lives in a subsistence lifestyle it can be a part-time job to do this. Mind you, there are gains to this information ecology, as you are solicited for products and services which previous choices suggest you would be predisposed toward. Similarly, there are upsides and downsides toward an open health and genetic information ecology. If you have a risk allele for a disease with a diet interaction effect, then there is a clear course of action. My own hunch is that this world is coming, no matter our wish, and we need to act in its early phases to grasp the shape of the future and set the parameters of the game. We can’t be passive. The information cloud is going to be there, and someone will parcel and claim it.
It may be trite, but when I push for open genomics on my friends and family I’m not telling them what they may gain. Rather, I’m arguing that the world may gain, and therefore downstream we may gain.