Verogen, the crime scene DNA sequencing company, announced Monday that it had acquired the genome database and website GEDmatch,media outlet The Verge reported. The acquisition has made the company’s relationship with law enforcement clearer, but has raised questions about data privacy and the future direction of the platform for users and experts.
GEDmatch will be used primarily by genealogists until 2018, but it caught the attention of the police, fbi and forensic genealogists by linking crime scene DNA to relatives who have uploaded their genetic information to the site to identify the suspected Golden State killer. Since then, the platform has helped identify some 70 persons accused of violent crimes.
To address privacy concerns, the company changed its terms last spring to allow users to actively opt in to access data. But until now, interaction with law enforcement has been a secondary feature of the platform.
“It used to be a bit like a temporary system that anyone who wanted to join it would use it,” said Brad Malin, co-director of the Center for Genetic Privacy and Identity in The Vanderbilt University Community Settings. It will now be used more systematically than ever on law enforcement. “
The announcement surprised many in genetics and genealogy, many of whom left the platform. Judy Russell, a lawyer and genealogist, said in an email to The Verge: “There have been so many changes, all of which are designed to make data a product, not a website, a service.” “
GEDmatch users are prompted to accept new terms and conditions indicating new ownership of the platform and may agree to and access the site or remove their data from the platform. Ceo Brett Williams told BuzzFeed News that Verogen will still allow users to retain their data to prevent law enforcement from using it and to maintain the option of joining. “In the future, it will be interesting to see whether the new owners will implement policy changes that will increase the number of people available for law enforcement searches,” said James Hazel, a postdoctoral fellow at Vanderbilt University’s Center for Community Settings for Genetic Privacy and Identity.
But opting in isn’t a foolproof system for protecting data: Last month, a Florida detective was granted permission to search the entire GEDmatch database, regardless of whether the user consented.
Malin says the details of the process of signing a new agreement do not seem to be enough. “Usually, with informed consent, you try to point out all the risks and then describe the benefits.” Malin believes that this is not so much a contractual agreement as a consent. “With this, that’s the buyer’s beware. “Even if people agree to the new terms, they may not fully understand everything that is required. In addition, users will not be notified about the acquisition, and those who use the platform on an irregular basis (and do not see a login prompt) will not have the opportunity to decide whether to delete their data from the database.
Once the opt-in system is in place, the amount of GEDmatch data available for law enforcement will drop dramatically, but the complete database includes about 1.3 million user profiles and is growing every day. The data can be used to identify many people: A study published in the journal Science showed that researchers could use data about that size to identify about 60 percent of people of European descent in the United States.
Therefore, a complete database is a powerful tool. However, data collected by a private business company in different gene database systems in the United States is inherently biased and weak. For example, in most genetic databases, people of European and Caucasian descent are overrepresented, and many in the United States are used. “Just trying to represent people through biological relationships may work in some cases, but not in other cases,” Malin said. “
The researchers found that systems such as GEDmatch could also be manipulated, and that people could create fake personal data and fake family relationships in a database.
The current weakness of the database is that Malin and his colleagues, including Hazel, outlined in their 2018 paper the benefits of a common forensic genetic database , which already contains a large number of genetic information states, but is fragmented and inconsistently managed. They believe that a universal database would be a more effective and less discriminatory tool.
“We want more control over the environment,” he says. Now (GEDmatch and similar companies) collectdata and place it in a private business domain that does not explicitly monitor the association. That’s a terrible prospect. “