I just got back from the American Public Health Association meeting in Denver where I presented a poster of my recent work on the data transparency policies of direct-to-consumer genetic testing (DTC-GT) companies. This is a fairly new area of research for me (born out of collaboration with one of my biostatistics colleagues who works on the genetic determinants of disease), but one that very much reflects my interest in novel technologies and corporate practices. We developed a coding tool based on several society and government body guidelines for DTC-GT companies and applied it to the privacy policies and terms of service documents of 30 companies targeting the US market based on a comprehensive web search. We looked both at what companies disclose about their handling of samples and data for purchased services and what they reveal about the use data for secondary research. You can read the full paper here in Genetics and Medicine, but the tl;dr version is that most companies aren’t great at telling people about the fate of samples and data once they are done running the tests people have purchased. Companies also have the really unfortunate habit of burying information about using data for research in the middle of dense terms of service or privacy policies, which many people don’t even bother to read anyway. There’s clearly room for improvement and people may be facing unanticipated risks in the meantime.
The full citation for the paper is:
Laestadius, L., Rich, J., & Auer, P. (2016). All Your Data (Effectively) Belong to Us: Data Practices Among Direct-to-Consumer Genetic Testing Firms. Genetics in Medicine.
And yes, it crossed my mind to title it “All Your Data Are Belong to Us,” but that seemed like pushing it (although the internet confirms that it is still a solid meme).
On a side note, APHA was wonderful as always and I had the opportunity catch up with old school and work friends, as well as make some great new connections in the social media and tobacco realms that I hope to translate into productive new collaborations. The speakers this year were excellent and Cecile Richards and Michael Marmot were really standouts for me. Now that I’m back in Milwaukee and feeling renewed and inspired I hope to streamline my workflow to really make the most out of the rest of 2016.