This just-published article in PLoS Genetics by David Craig and Nils Homer reveals how the straightforward use of information technology puts the identify and health risks of individuals within the access of the public if two conditions are fulfilled: 1) Their genome-wide data (e.g. from a SNP chip) was published online and 2) Someone has some DNA from that individual (e.g. life insurance company? Forensic experts?). This is essentially the genomic equivalent of the disclosure mechanisms that Latanya Sweeney highlighted in the case of conventional medical data. As a result of this article, several national research organizations, private and public, are now pulling data down from their websites. This is going to therefore result in at least a temporary setback in genomic data dissemination for research purposes. Which is going to sadden all of us who are working to bring biomedicine forward into the 21st century. In this context, it seems that we will really have to find large cohorts of health information altruists who are willing to share their data with full understanding of the risks, and perhaps full legislative protection against such risks.
This highly amusing story about fish that are not what they are said to be, should be a sobering wake-up call to medical schools. Here we read about students using third parties to DNA sequence and then taxonomize samples they procured in restaurants and groceries. In the article we read of high-school students (who are not necessarily interested in careers in science) whose scientific literacy with regard to genetics would put many physicians to shame. Admittedly, these students have privileged access to well-informed thought leaders and yet can we point to equally creative and hands on teaching of genetics (and its commoditization) in our elite medical schools? The gap between the public's knowledge of genetics and that of the "professionals" appears to be continually narrowing even while public expectations of the value of such knowledge continues to grow.