‘Only a click away — DTC genetics for ancestry, health, love…and more: A view of the business and regulatory landscape’

Abstract

I provide an overview of the current state of the direct-to-consumer (DTC) genetic testing industry and the challenges that different types of testing pose for regulation. I consider the variety of services currently available. These range from health and ancestry tests to those for child talent, paternity, and infidelity. In light of the increasingly blurred lines among different categories of testing, I call for a broader discussion of DTC governance. I stress the importance of shifting our attention from the activities of the most prominent companies to viewing DTC genetics as an industry with a wide spectrum of services and raising a wide variety of issues. These issues go beyond questions of clinical utility and validity to those of data security, personal identity, race, and the nature of the family. Robust DTC testing has the power to provide meaningful clinical, genealogical and even forensic information to those who want it; in unscrupulous hands, however, it also has the power to deceive and exploit. I consider approaches to help ensure the former and minimize the latter.

Response to ‘Brexit, Archaeology and Heritage: Reflections and Agendas’

“…For instance, many members of the public in Britain believe that these tests can link them to specific Early Medieval cultural groups, as evidenced by the data collected for this research by the authors (Scully et al 2013;2016). Marketing by some genetic ancestry testing companies has exploited these beliefs.…”

“…As far as modern populations can be used as historical proxies, these ancestry composition tests are likely to only reflect the last c.300 years and certainly cannot be used to link an individual's genetic information in any meaningful way with Early Medieval cultural groups. However, the reluctance of genetic ancestry testing companies to explain these aspects of their tests means that the public are left to interpret their ancestry composition results themselves, perhaps with the aid of the internet, which will inevitably produce narratives consistent with their own preconceived ideas or desires regarding their deep ancestry (Scully et al 2013;2016). This situation is potentially problematic as, without caveats, the idea that it is possible to use genetics to distinguish world populations can reify concepts of race and ethnic nationalism (Morning 2014;Nash 2015).…”

“…Encouraging a baseline level of knowledge in the general public with regards to what ancient and modern DNA can and cannot tell us about ancestry and heritage is increasingly pertinent, especially at a time when relatively cheap direct-to-consumer genetic ancestry testing kits are quickly becoming a popular way for the public to explore their ancestry and family history (Royal et al 2010;Jobling et al 2016;Phillips 2016). These tests have the potential to disrupt biologically determinist ideas of nations and new nationalisms, in that they invariably suggest that individuals have diverse ancestral origins.…”

Behavioral Genetics in Criminal and Civil Courts

“…Law enforcement officers routinely obtain DNA samples from soft-drink cans or cigarette butts used by suspects and others, and direct-to-consumer genetic testing companies offer “legal paternity testing” that is handled by licensed experts and facilities to ensure that judicial admissibility standards are met. 139 Although these are currently used for identification purposes, it is plausible that, in the future, the analysis of data would expand to include behavioral and psychiatric conditions. This possibility could significantly impact criminal and civil proceedings by incentivizing litigants—especially wealthier ones (such as governmental entities)—to collect genetic data and present them as evidence notwithstanding the considerable privacy infringement involved.…”

A market in the making: the past, present and future of direct-to-consumer genomics

“…In the last decade, the DTCGT market appears to have grown further, at least in terms of the number of firms that have entered the market: Philips (2016) survey identified 246 firms. The heterogeneity of product offerings has also expanded: DTCGT firms specialize in different areas such as ancestry, athletic traits, character/personality, familial relatedness, nutrigenetics and quirky traits such as a propensity toward ear wax.…”