Information disclosure makes the case for information altruists

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.


Does electronic publishing diminish the breadth of the scientist's scholarly attention span?

In this article in Science Magazine (sorry, subscription required), Dr. Evans argues that it does. By reviewing citation data covering over 50 million articles going back to 1945, he presents evidence that the more a journal makes it's backfiles available electronically, the less the author of a manuscript is likely to cite papers that are further in the past and/or less closely relevant to her research. There are several dissenting voices with regard to this analysis, but let's ponder what it might mean. Dr. Evans suggests one cause may be the relatively poor pre-electronic indexing which compelled readers of print articles to necessarily cast a broader net while browsing the literature. A less charitable hypothesis would be that in the face of an overwhelming number of relevant articles, a prospective author will find enough relevant articles to cite within the most recent published segment of the bibliome and/or the most high profile journals. When enough authors follow this trend (perhaps by following the the citation styles within the most cited articles), the result is a general narrowing of scope of attention of the scientific community within each discipline, both in subject matter and in time. A more optimistic view is that we have all become more agile in our use of electronic search and that in the face of a mountain of less relevant publications, we have become much better at winnowing out the chaff. Or it could be that the ordering of search results by year could be biasing investigators (sorry, subscription required) in ways that they are not aware of. Regardless of the cause, in an era in which we have all called for "evidence based medicine," it should give us pause if our view of evidence is overly myopic due to its electronic immediacy and organization.

More genetics in high school than medical school?

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.