An Ethnography of Direct-to-Consumer Genomics [DTCG]: Design Anthropology Insights for the Product Management of a Disruptive Innovation Page: 101
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today appears to fail in consistently delivering on that promise. The problem was found
among both groups, however it does appear to be more widespread within the health
group. It is theorized the major stumbling issues are lack of information, consumer
literacy and their ability to understand the information presented, and the applicability of
5.6 Genomic Literacy and Consumer Perceptions of Risk in the Bioeconomy
Given the high levels of trust in DTCG tests, and user experience shortcomings
that result from lack of consumer literacy, consumer safety also needs to be discussed.
Social scientists have called attention to a number of risks associated with consumers
exchanging their genomic data, or biocapital, with private DTCG companies, and the
use of that data by companies (Hogarth and Melzer 2008). Consumer advocates have
often stated that consumers lack sufficient genetic literacy regarding genomics and
information technology, and subsequently opt into contracts that allow the companies
unprecedented control over the use of their biocapital because of how the consent
process is structured.
The reason for this is because the purchase of a DTCG test is structured to be
relatively frictionless. A consumer typically goes to a website and orders the test with a
few clicks like almost any other e-commerce experience. While efficient, some believe it
is also dangerous because consumers are opting into a contract that often has large
ramifications related to their personal DNA and what the DTCG companies may or may
not be able to do with that data (Phillips and Charbonneau 2015). The concern is
grounded in the way the legal terms are delivered. The legal terms are often able to be
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Artz, Matthew. An Ethnography of Direct-to-Consumer Genomics [DTCG]: Design Anthropology Insights for the Product Management of a Disruptive Innovation, thesis, August 2018; Denton, Texas. (https://digital.library.unt.edu/ark:/67531/metadc1248393/m1/109/?q=genetic%20literacy: accessed October 7, 2022), University of North Texas Libraries, UNT Digital Library, https://digital.library.unt.edu; .