FamilyTreeDNA feels free to share my genetic profile with police
A few years ago, my interest in family history lead me to purchase genetic-genealogical services from FamilyTreeDNA. In 2018, FTDNA secretly agreed to allow the FBI to access its database of 2 million records to identify suspects and victims of unsolved rapes and murders.
In a statement to ABC Eyewitness News, the FTDNA said:
“FamilyTreeDNA’s autosomal database is accessible to users in one of two ways. They can purchase a Family Finder test, or if they have an acceptable file, they can upload their autosomal DNA data for free. A user and their match must both have matching turned to see each other’s profile in their matches list. The information shared between matches is limited and dependent on the user’s sharing preferences and the information they provide in their account settings. In no circumstance is a user’s raw data accessible to other users, including law enforcement.
“With FamilyTreeDNA’s database, as with other databases similar to ours, law enforcement is capable of uploading genetic files and searching for DNA “relatives,” to assist them in their efforts to identify the remains of deceased individuals and suspected killers and perpetrators of sexual assault.”
In an email to me and other users on February 3, 2019, the FTDNA’s founding president, Bennett Greenspan, defended his company’s agreement, but apologized for not disclosing it at the time:
“I am writing to address the news that our Gene-by-Gene laboratory, which processes genetic tests for several commercial clients in addition to all of the FamilyTreeDNA tests, has processed a handful of DNA samples for cold cases from the F.B.I. In many cases, the news reports contained false or misleading information.
“Let me start with this categorical statement:
“LAW ENFORCEMENT DOES NOT HAVE OPEN ACCESS TO THE FTDNA DATABASE.
“They cannot search or ‘dig through’ FTDNA profiles any more than an ordinary user can. As with all other genetic genealogy services, law enforcement must provide valid legal process, such as a subpoena or search warrant to receive any information beyond that which any other user can access.
“I have been an avid genealogist since I was twelve years old. FamilyTreeDNA is not just a business, it is my passion. I fully understand your privacy concerns on a personal level.
“FamilyTreeDNA has always taken your privacy seriously and will continue to do so. We’ve remained steadfast, always, refusing to sell your data to pharmaceutical companies and other third parties.
“One of the key reasons law enforcement wanted to submit their samples to us is the same reason many of you have: out of all the major companies, FamilyTreeDNA is the only one that has its own lab, and our customers’ samples never leave our company.
“As previously stated, law enforcement can only receive information beyond that which is accessible to the standard user by providing FamilyTreeDNA with valid legal process, such as a subpoena or a search warrant. Again, this is specified in FamilyTreeDNA’s Terms of Service, just as with all other companies.
“ABOUT OUR TERMS OF SERVICE
“The Terms of Service were changed in May of 2018 to reflect GDPR requirements, and we informed our customers about the update at that time. Those changes included a paragraph that required law enforcement to receive our permission to enter the database and since it was a part of the overall update, notice was sent to every FTDNA customer. Without infringing upon our customers’ privacy, the language in the paragraph referring to law enforcement was updated in December, although nothing changed in the actual handling of such requests. It was an oversight that notice of the revision was not sent to you and that is our mistake. Therefore, we are reverting our TOS to our May 2018 version, and any future changes will be communicated to you in a timely manner.
“This is the May 2018, GDPR-compliant version, communicated to you at that time: ‘You agree to not use the Services for any law enforcement purposes, forensic examinations, criminal investigations, and/or similar purposes without the required legal documentation and written permission from FamilyTreeDNA.’
“WE WILL DO A BETTER JOB OF COMMUNICATING WITH YOU.
“I am genuinely sorry for not having handled our communications with you as we should have.
“We’ve received an incredible amount of support from those of you who believe this is an opportunity for honest, law-abiding citizens to help catch bad guys and bring closure to devastated families. We want you to understand, as many of you already do, that you have the same protections that you’ve always had and that you have nothing to fear.
“We’ve also heard from supporters offering ideas and solutions to make the FamilyTreeDNA experience a more comfortable one in light of this new information.
“We are listening. Our plan is to create a panel of citizen genealogist advisors who will work with us as we focus on how to make your FamilyTreeDNA experience the best one available.”
The news underscored the lack of universal regulations governing direct-to-consumer genetic testing in the United States and how companies can use their data without consumers’ knowledge.
“It’s a good example of, are you willing to stay abreast of every terms of service change with FamilyTreeDNA, or are you doing it once because it was a holiday present?” Erin E. Murphy, a professor at New York University School of Law who wrote the book “Inside the Cell: The Dark Side of Forensic D.N.A.,” said in an interview.
“Even if you were reading all of your spam email about all the privacy changes, did you get one that says you have agreed to be the FBI.’s testing lab? No, they did not issue that,” Ms. Murphy said.
Alan Butler, the senior counsel at the Electronic Privacy Information Center, described the situation as “‘bait and switch’ behavior that consumer protection laws are meant to prohibit.”
“The company needs to either roll back the change or else delete all stored DNA data it has collected from individuals under the previous agreement,” Mr. Butler said.
The company has not disclosed how many cases it has worked on, but Mr. Greenspan said in the email to users that it was “a handful of DNA samples for cold cases from the F.B.I.” .
While investigators have used open-source sites such as GEDmatch to find DNA matches and possible relatives, the agreement with FTDNA includes the first known commercial site to provide some services without a subpoena or warrant.