'Any idea we had about privacy is over,' says author of new book on genealogy
Genealogy is a white-hot topic, an endless data mining project and a very lucrative business. Three years ago, Faculty of Liberal Arts & Professional Studies Professor Julia Creet produced and directed Data Mining the Deceased, a TVO documentary that has now been seen by over half a million people and is streaming on demand in Canada, the U.K., the U.S., India and Australia.
The Office of the Privacy Commissioner of Canada called it “one of the best projects we have funded.” Indeed, Creet’s research is well poised to inform policy-makers' decisions around how to regulate this seemingly unregulatable area of technological development.
Today, the 2019 recipient of the President’s Research Impact Award is on the eve of releasing a book that’s a companion piece to the film. The Genealogical Sublime will be published by the University of Massachusetts Press in February 2020. Funded by the Social Sciences & Humanities Research Council and the Office of the Privacy Commissioner of Canada, it traces the histories of the largest, longest-running, most lucrative and most rapidly growing genealogical databases.
Creet sits down with Brainstorm to discuss her highly anticipated new book.
Q: Did one thing spark your interest in genealogy and databases?
A: Yes. Yugoslav author Danilo Kiš wrote a book of short stories, Encyclopedia of the Dead, in the 1980s. One of the stories, a great gothic piece, provoked my interest. The story is about an encyclopedia that was penned by unknown, all-seeing historians and buried in a tomb beneath the Royal Library of Sweden in Oslo. It contained a book, or entry, for every ordinary person who had ever lived since 1789. The entirety of their lives had been captured, every detail. The story’s narrator finds herself in the tomb after her father’s death. Here, all of the books in the encyclopedia are chained to the stacks. The implication is that these histories, these lives, are the possession of the archives.
After Kiš published the book, he discovered, through a newspaper article, that his story was real. The Mormon Archives in Salt Lake City maintain such records. In the second edition of The Encyclopedia of the Dead, Kiš notes this fact in a long footnote. This footnote drew me to the Mormon Archives, of which I was unaware at the time. This was motivation for both my documentary and The Genealogical Sublime.
“At York, we’re very good at recognizing talent that doesn’t fit into conventional disciplines.” – Julia Creet
Q: The book evolved from the documentary?
A: I had way more research than I could fit into the documentary. So, I had the material, and I developed the thesis: I wanted to write about the most complete, the largest genealogical databases in the world. They all aspire for an uncanny completeness, which is exactly what Kiš’s story was about. We all are, for some reason, yearning for a complete record of the dead.
Q: What were the case studies, and why were they selected?
A: I started with Confucius, whose descendants created the oldest recorded genealogy in the world – 184 generations. This genealogy is 2,500 years old.
The next one is the Mormon Database, the largest database in the world. The Mormons have already accumulated a quarter of the records. Their goal is to get all of the genealogical records in the world to trace the family of man back to Adam and Eve. It’s a mammoth project.
The next one is Ancestry.com because it’s the biggest. It was started by Mormon entrepreneurs. The Mormon Church backs the entire industry indirectly.
Then I looked at the Iceland genealogical records because theirs is the most complete of any nation and also because it was funded by a pharmaceutical company, DeCode Genetics, that wanted to marry the genealogical records with genetic histories for the genetic marking of diseases. That’s the most concerning. The power of melding genealogic information with genetic information is that it gives you family histories and disease profiles.
DeCode paid for the database in Iceland to be constructed, creating new privacy issues. So, you see, every database has a different motivation behind it, and different problems and implications.
Q: What’s the state of regulation? What’s the danger of being unregulated?
A: There are very few regulations in Canada and the U.S. around the collection of, use of and access to this information. The industry is basically self regulating. Europe has much stricter regulations; France has banned consumer DNA tests.
The dangers? All of the information is being sold to the pharmaceutical industry. Ancestry.com is selling it to Google-owned Calico, an American biotech company. 23andMe is pretty much Google-owned. There’s also MyHeritage and Helix. So, there are four or five big databases, none of them regulated, with varying degrees of privacy.
Of course, everyone’s worried about the insurance industry, which would love to get its hands on these databases. Canada has a genetic anti-discrimination law that says you can’t be discriminated against based on your genetics, which is supposed to protect us from the insurance industry.
Q: Do customers realize the ramifications of handing over their DNA?
A: Nobody predicted how this information could be used. GEDmatch, a public database in the U.S. with few privacy provisions, is a case in point. Here, consumers uploaded their genetic results from Ancestry and 23andMe to find relatives. In spring 2018, without permission from the database or its users, the police uploaded the DNA from an old rape-murder case (the “Golden State Killer”), found distant matches and, working with a genealogist, rooted out the criminal: 72-year-old Navy veteran Joseph James DeAngelo.
GEDmatch has become an invaluable source for law enforcement. This raises very serious issues of genetic privacy.
“No more family secrets. When submitting your own genetic information, you’re providing the genealogy of your children, grandparents, distant cousins, entire family.” – Julia Creet
This really showed customers that you’re not just submitting your own genetic information, you’re providing the genealogy of your children, grandparents, distant cousins, entire family.
This is what people don’t seem to understand about DNA: Privacy is antithetical to genealogy. The real issue now is how to protect the privacy of people who haven’t uploaded their DNA, which is next to impossible.
Q: What’s the scariest thing about this?
A: Columbia University Professor Yaniv Erlich, the chief science officer of MyHeritage, recently said that given the amount of information that’s in the public databases, you could track the identity of 60 per cent of the U.S. white population. (This population has undertaken the genealogical quest more readily than the non-white population, for various reasons.)
“This industry has taken that potent, spiritual, all-too-human need to belong … and monetized it in a particularly exploitative way.” – Julia Creet
He also predicted that all you need is two per cent of the population’s DNA to be able to identify everyone in that population. That’s the statistic I find the most disturbing. Any idea we had about privacy is basically over. No more family secrets.
This industry has taken that potent, spiritual, all-too-human need to belong or trace our origins … and monetized it in a particularly exploitative way.
Q: This is timely, policy-applicable work. What kind of support has York University provided?
A: York’s a wonderful place. I’ve had huge support while grant writing and from Research Accounting.
I came here in 1998 and was basically left alone – that is, I could do whatever I wanted as long as it made sense as a research project.
I never do anything by the book. York has allowed me that kind of creativity. At York, we’re very good at recognizing talent that doesn’t fit into standard or conventional disciplines.
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By Megan Mueller, senior manager, research communications, Office of the Vice-President Research & Innovation, York University, firstname.lastname@example.org