DNA testing and tracing one’s family roots are pretty popular endeavours these days, but they’re also big business, and one with a potentially dark side, according to Julia Creet, a professor of English who has a longstanding interest in family heritage matters.
There are questions of privacy and of the lack of compensation given to people who provide these companies with their valuable DNA, said Creet.
“People don’t realize that the DNA they’re giving to see if they’re 50 per cent this or 23 per cent that, that information you’re giving to a genealogical company is much more valuable than what you get in return,” she said.
In 2017, Creet produced a documentary on the subject called Data Mining the Deceased: Ancestry and the Business of Family. She will present the film and lead a discussion about its findings at an event sponsored by the Jewish Genealogical Society of Toronto on Jan. 27 at the Shaarei Shomayim synagogue.
The discussion will focus on the question of who owns the DNA you entrust to a DNA company and what uses it can be put to.
Creet said her research showed that the DNA people willingly provide to companies has tremendous financial value.
“All the information is being sold to the pharmaceutical industry,” she said. “They want it for research. If you know the disease profile and you know the genealogy, you can start to trace disease patterns through a family.”
Creet doesn’t believe that pharmaceutical companies are using the DNA for nefarious purposes, saying that, “They want to develop pharmaceuticals to help.”
But the information they are getting – DNA, family histories – has financial value, which is not being realized by the people who send their saliva samples to the big genetic testing companies, she said. “You’re giving away your most private information to get back a report on your blood lines.”
The pharmaceutical companies that obtain the genetic material are not bound by privacy issues that constrain the DNA companies, she warned.
“Everybody says that DNA is the Wild West of privacy now. Companies are making big money by using your DNA and we don’t know how this information will be used in the future. Who will get access to this information in the end? Insurance companies? It’s a gold mine for them if they get hold of it.”
DNA has been used in other ways not contemplated by those who provided it, she continued. In the United States, police used a DNA database to help solve a murder cold case that had been inactive for 40 years. They had collected a DNA sample from the crime scene, but could find no match. They created a fake profile and sent the sample to a company that collects DNA and matches people with their distant relatives. Police received two matches of distant relatives of the killer. They then located relatives of the people who had provided their DNA to the company and made an arrest.
While DNA was used for a laudable purpose in that case, the way it was used is problematic, Creet suggested.
“Regardless of whether we think it’s a good thing, the flip side of it is that now there are estimates that 60 per cent of white Americans can be identified, whether they gave DNA or not,” she said.
“My goal is to get people to think what it means to submit a DNA sample. It’s not a benign enterprise. You’re not being compensated and you have very little control over the DNA you give.
“We lose control of our most private information when we send it to these companies. There is less control over DNA privacy than Facebook privacy. It’s really quite frightening how little government oversight there is over the industry.”