The family history business is booming. English Professor Julia Creet explores the bigger picture behind the ancestry industry in her new documentary, Data Mining the Deceased: Ancestry and the Business of Family.
Filmed in Canada, the United States, the United Kingdom and Iceland, the documentary takes a look at people’s motivations behind the business of genealogy, from individuals to industry, from amateur genealogists to experts, from for-profit to religious groups. In the process, Creet discovers the privacy and ownership concerns over the collection, aggregation and transfer of vast amounts of information – about the living and the dead – within and across borders.
"The idea for Data Mining the Deceased came from a previous documentary called Mum, which was a story about a family secret,’” says Creet. When she finished producing that documentary and digging into her family history, she asked herself “was I a part of a larger zeitgeist?”
The answer is yes. Yet, the reason to why people feel the need to discover their ancestry beyond that of their parents, and perhaps their grandparents, depends on where they’re from, their ethnicity and how much their family has migrated. Creet notes that contemporary interest in genealogy arises primarily from migratory populations.
“I take up the question of African-American ancestry in the documentary,” says Creet. “African-Americans are among the most deracinated people in the world. Their ancestry is a line that’s completely broken by slavery, so there is very much a need about establishing identity with respect to racial or cultural origins that has all kinds of repercussions for pride in one’s inheritance. It’s one thing to say, ‘I came from slaves.’ It’s another thing to say ‘I came from this tribe in Africa.’”
It’s similar for Jewish people in more recent history, adds Creet. “The holocaust severed so many family relations and so many people died anonymously, it’s about recognizing family members who were completely eradicated.”
In Iceland, however, with relatively little migration, genealogy is vital to the well-being of the country. With a relatively small population of over 335,000 people, Icelanders work hard to avoid intermarriage and keep track of family lineage with an online family database called Íslendingabók.
“They have to worry about family lines because genetic weaknesses and inherited diseases increase if you’re marrying within a very small gene pool,” Creet says. Biopharmaceutical company DeCode Genetics, which funded the creation of Íslendingabók, was given access to the country’s medical records for all Icelanders dead or alive and began to aggregate and sell records, donated DNA data and other collected genealogical information. That’s when concerns about privacy arose and, for example, Icelanders began to understand the repercussions of what would happen if DNA data ended up in the hands of insurance companies.
“There was a privacy challenge that went to the Supreme Court of Iceland and the Supreme Court ruled that in fact Icelanders’ privacy has been breached,” says Creet, but by that time the information was already sold overseas.
“The value in the data is in the braiding of genetic and genealogical information, which is hugely helpful for medical purposes,” says Creet. Yet, “a lot of people don’t realize that when you give information or DNA to a genealogical database, you’re giving away all of your proprietary rights to that information. In other words, the company now owns the right to do with that information what they want. They can buy, sell and distribute it in any form they want.”
Data Mining the Deceased, which airs on TVO on Feb. 1 at 9pm, takes fascinating turns as it traverses the world of mapping ancestry, including the Mormon Church’s role in amassing the largest database on the planet.
“We’re all compelled by this,” says Creet. “We’re not living with multigenerational families, and so we have a sense of being very isolated in the world. And we are isolated. That isolation leads us to this desire to be connected.”