Direct-to-consumer genetic testing is on the rise with companies now offering products for several different purposes. Many of these devices are health-related, with ancestry tests also being immensely popular.

DNA testing and data privacy

Reports indicate that over 26 million people have now submitted their DNA to undergo at-home ancestry testing. The vast majority of this DNA, or the resulting data, is being held by a small number of privately held companies that dominate the market; these include Ancestry.com, 23andMe, FamilyTreeDNA, and MyHeritage.

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There seems little doubt that people are interested in finding out more information about their ethnicity, family migration and distant relatives. More recently, another surprising benefit of direct-to-consumer ancestry testing was demonstrated.

On 17 July this year, Chris Tapp, 43, — a US man who spent the past 20 years in jail for murder and rape — was exonerated in Idaho Falls, Idaho. This is not the first time that genetic genealogy tests have been used to help to solve crimes. However, it is the first time that these devices have been used to overtime a conviction and prove someone’s innocence.

The major break, in this case, came when DNA evidence found at the scene was compared to a third-party database GEDmatch. GEDmatch is a free, open data service run by genetic genealogists. Individuals who have purchased direct-to-consumer genetic tests from providers such as Ancestry.com can upload their test results to GEDmatch, enabling them to compare their profile to individuals tested at other companies.

The use of resources such as GEDmatch for criminal investigations has raised some interesting questions about data privacy.

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In the wake of high-profile cases such as the Golden State Killer, which was also solved using GEDmatch, it has become clear that current privacy and property laws need to evolve in order to deal with the new availability of genetic data.

While companies such as Ancestry.com and 23AndMe do not allow law enforcement officials to upload forensic profiles to their websites, GEDmatch has stated that it doesn’t have the legal resources necessary to prevent the site from being used for this purpose. Instead, GEDmatch updated their terms of service and privacy policy in 2018 to warn users that their data may be used for a similar purpose.

Related Reports

Caution urged when home testing with 23andMe (21 May, 2019)

GlobalData (2017). North America Genetic Testing Market Outlook to 2024 GDMECR0746DB