Consumers of direct-to-consumer (DTC) genetic testing download raw data at high rates and frequently use third-party interpretation (TPI) tools, according to a study published June 13 in the American Journal of Human Genetics. Given that individuals will have increasing routes to access their raw genetic data, the authors say it is important to understand how consumers use raw data given the expanding number of available TPI services. “Rather than taking sides in a potential ensuing ‘culture war’ about raw data, the professional genetics community has an opportunity to proactively engage with users, understand the complexity of their motivations for pursing third-party analysis, and ultimately educate them about potential limitations,” write the authors led by Sarah Nelson, from University of Washington in Seattle. In the near future, it is likely that patients will have access to their raw genetic data from an increasing number of sources. There are indications that the the direct access right granted under the Health Insurance Portability and Accountability Act of 1996 includes sequencing data. Further, national-level bodies, like the National Academies of Sciences, Engineering, and Medicine, issued recommendations supporting returning “individual research results,” while large-scale, research-based, sequencing efforts, like the National Institutes of Health’s All of […]