As the Christmas period approaches, calls for people to avoid ethnic breakdown DNA testing kits as gifts have come once again.
Last week, reporter Karlin Lillington from The Irish Times asked people to be mindful of exposing their sensitive and valuable data and to avoid DNA tests altogether, citing Facebook as the prime example of data sharing mishaps.
British Pharmaceutical powerhouse GlaxoSmithKline announced in July a €300 million partnership with genetic testing company 23andMe to gain access to their genetics database from consumers’ DNA as a guide for developing new medicines. A med-tech company owned by Google is planning to buy data from ancestry.com.
Personal data is sold to third parties without explicit consent and without any legal obligations to detail the intended use, recipients, or accountability if something goes wrong. Icelandic companies are currently under fire for said ethically questionable act.
According to ancestry.co.uk’s terms and conditions, “you grant Ancestry a sub-licensable, worldwide, royalty-free license to host, store, copy, publish, distribute, provide access to, create derivative works of, and otherwise use such User Provided Content to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered”.
Domestically, Genomics Medicine Ireland aim to gather DNA from 400,000 Irish residents for medical research, which secured 350 million from the Irish Strategic Investment Fund. Lillington noted that announcements were concerned with the 600 new jobs it will provide rather than the promotion of citizen DNA scraping.
More legislation may be necessary to ensure the compliance of companies with GDPR, as the New England Journal of Medicine recently referred to the current system as a “wild west environment”.
This week, Gardaí announced their aim to share forensic DNA with other European police forces to solve cross-border crime and fight terrorism. This includes non-EU members Iceland and Norway.
The national DNA database system under Forensic Science Ireland helps to match DNA with the profiles of criminal suspects, convicted criminals, and former offenders.
Since the start of November, the database contained 16,361 DNA profiles of convicts and individuals under investigation, as well as 4,971 crime stain profiles.
The forensic DNA matching system has an effective rate of 36.7 per cent, as 1,825 crime stain profiles have been matched to individuals. So extended sequences of DNA from consumer test kits can be linked back to the individual without great difficulty.
The forensic DNA sharing has been approved by the EU Council, and although there may be less concern about data leaks, the potential for ethnic profiling remains.
The Garda Press Office did not respond to a request for comment in time for publication.
Alex Barrett & Sabrine Donohoe
Image Credit: MaxPixel