While we worry about things such as how biological samples and paper data collection sheets are labeled, the world of genetic accessibility marches on. Recent articles in The New York Times and the journal Science point out that publicly available genealogy databases now allow the identification of about 60 percent of Americans of Northern European descent — regardless of whether those people have joined those databases themselves (think “blood relatives”). Nearly any white American will likely be identifiable “in the near future,” the Science authors write. These databases have already proven themselves useful in identifying suspects in long-cold criminal cases. The evolving notion of “privacy” will have implications for human subject protections. As this online Bloomberg opinion piece notes, “the same tools can also be used to identify who has, for example, participated in a clinical study in which genetic data is supposedly anonymized.”
Please take a look at these articles and consider what we might need to change regarding privacy and how we manage it.