Privacy Concerns Limit Use of Genetic Data from DTC Tests 
​[Posted on: Thursday, May 11, 2017]

Of the 48 major categories of direct-to-consumer (DTC) genetic and genomic tests available to consumers, the tests for ancestry dominate the number of people and tests being done, followed far behind by those for health-related general information. By some estimates in the US alone more than 5 million individuals have had their genomes sequenced for determining ancestry. Recent approval of the general health risk (GHR) test from “23andMe” is expected to boost the health-related genetic tests by consumers. Of the more than 1000 genetic tests available to consumers in the US, only about 70 are approved as genetic diagnostic tests by the FDA. The analytical and scientific validity of the widely available genetic tests has been often challenged by experts and regulators for lack of real world human data. One could argue that with millions of people getting genetic and genomic sequencing, there should be significant genetic data available from general populations for research and validation of the other genetic tests. However, who owns the genetic data? Obviously companies conducting such tests hold the genetic data in their databases and could use it for internal research and further commercial applications. But should such data be widely available publicly? There are obvious privacy, and personal safety and well-being concerns. But will the overall good purpose of aiding research motivate people to share their genetic data?
A survey of users of openSNP, a publicly accessible web platform where user can voluntarily share their genetic data, showed that a large majority of the users did so for contributing to the advancement of medical research, wanting to help improve the predictability of genetic testing, and considering it fun to explore genotype and phenotype data. It should be note that openSNP has only about 5000 users which is a very small fraction of the total number of people who have had such tests done on them in the last 3-5 years, and only about 10% of these users (550 users) responded to the survey. So, it is hard to draw strong conclusions from such a survey but it does point towards the concept of public sharing of genetic data. Without such sharing, it could take a very long time before general health risk tests become a reliable source of useable information for the consumers.