Privacy
Giving the “gift” of DNA
You’re pretty sure you weren’t delivered by the stork, but you’d like to learn more about your ancestors. Perhaps you think a DNA test is the answer? Think again.
Christmas is a family holiday. These days, more and more folks seem to reckon that a genealogy DNA test makes a great gift for their nearest and dearest. It’s simple: you put a small sample of buccal mucosa in a test tube, pop it in the mail, and a few weeks later the laboratory sends back the results. People who believe their background is 100 per cent French or British may end up discovering they have many other origins in their genetic makeup: Scandinavian, Italian, Hispanic, African, Jewish and more. DNA testing companies also provide their customers with a list of all the other people who have taken the test and have a genetic link to them – up to the fourth or fifth degree. Customers have discovered brothers, sisters, even unknown fathers this way. For an additional fee, DNA testing companies will also disclose any genetic predispositions to diseases.
“It’s a really easy thing to give your relatives as a Christmas present, but people don’t think it through,” says Julia Creet, an English professor at York University in Toronto and director of a documentary film on genetic genealogy, Data Mining The Deceased: Ancestry and the Business of Family.
In Creet’s opinion, commercial genetic testing should not be considered a gift.
You pay $50 or $100, sometimes $150 for the service. Then the company owns your genetic code. And not just yours, but everyone you have a blood relationship with: your children, parents, nephews, nieces and cousins, born and unborn. All these people share almost the same DNA.”
Julia Creet, English professor at York University in Toronto and filmaker
In fact, by ordering these tests, you may actually be putting your loved ones at risk by handing over their most intimate possession – their genetic code – to law enforcement officials, pharmaceutical companies or other commercial interests, such as insurance companies.
DNA testing companies have a good thing going: demand for kits doubled nearly every year between 2012 and 2019. By 2018, the last year for which reliable figures are available, the industry, dominated by three U.S. companies – Ancestry, 23andMe, and Family Tree DNA – had tested the DNA of some 26 million people, most of European origin. Such a large sample covers a broad swath of the population. In a widely cited study published in the journal Science, Columbia University professor Yaniv Erlich, also Chief Scientific Officer for the Israeli company MyHeritage, said samples of just 1.28 million genetic codes could be used to identify 60 per cent of Americans of European origin. It would only take three million genetic codes to identify 99 per cent of that whole group. “The reason it works so well is that we are all more or less related,” explains Creet, who notes that companies are trying to get more DNA tests from African-Americans, Hispanics and Native Americans, who generally shy away from testing.
With sales of US$1 billion and at least 15 million records, Ancestry is by far the largest company of its kind. The company, based in Lehi, Utah, was founded in 1996 by two Mormons. That’s no coincidence: genealogy is central to the doctrine of the Church of Jesus Christ of Latter-day Saints. One of the central rites of the religion is to baptize ancestors – yes, retroactively, even long after death. The Mormon Church’s ultimate goal is to build a complete family tree of all mankind that goes back to Adam and Eve.
However, the Mormon Church does not perform genetic testing itself. As a result, it has worked closely with private DNA testing companies, notably in exchanging information about family trees for DNA records. “The contribution of the Mormons is essential to the operations of private DNA testing companies,” says Creet, whose recent book The Genealogical Sublime (University of Massachusetts Press) provides a detailed look at the industry.
Private databases sell relationships, but just sharing three or five per cent of someone else’s DNA doesn’t tell you what relationship you have with that person. To establish the relationship, you need to build a genealogical tree. In other words, it’s the family tree that makes the genetic material valuable.”
Julia Creet
For police use, but not exclusively
DNA has become extremely useful, both for the study of genetics and for solving crimes. In principle, police have access to a fairly limited DNA bank that consists of DNA samples from criminals and missing persons. According to Interpol, the bank represents 245,000 people in 85 countries. But police forces are now beginning to dig into DNA testing companies’ records of people who have voluntarily donated their DNA for genealogical purposes.
In 2018, genetic genealogy made the headlines when FBI detectives used data from the DNA testing company GEDmatch to track down the “Golden State Killer,” Joseph James DeAngelo, who was responsible for 13 murders, 50 rapes and 120 robberies. Interesting fact: the genetic code of the killer, who was identified by the DNA recovered from some of the victims, was not actually in the GEDmatch database. DeAngelo was identified through a third cousin who had had a DNA test. Joseph James DeAngelo’s name was in the cousin’s family tree, and the police were able to identify him after several interrogations and crosschecks.
Since that landmark case, about 100 other crimes have been solved by matching DNA to a relative’s records. In October 2020, Toronto police were able to identify the murderer of nine-year-old Christine Jessop, who was raped and murdered in 1984, via that method. The case had been in the courts for more than a decade when Guy Paul Morin was acquitted exoneratedafter being falsely accused of the crime. The real killer turned out to be Calvin Hoover, a neighbour who died in 2015.
While police use of DNA databases, officially or unofficially, is public knowledge, few are aware that companies who perform DNA testing, like Family Tree DNA, the oldest player in the field, actually sell their services outright to the police. To date, Family Tree DNA has opened some 2 million files for the FBI to use in various murder and rape investigations. GEDmatch, meanwhile, was recently acquired by Verogen, a firm that sells forensic services to police forces.
“Ten years ago, nobody anticipated that the police would use databases of private DNA testing companies, and we can’t predict how they will be used in the future,” says Creet.
In addition to offering human identification services to police, other commercial opportunities are now appearing for genetic genealogy companies. According to a survey conducted by Vanderbilt University professors James Hazel and Christopher Slobogin, 71 per cent of genetic DNA testing companies do more than simply provide customers with information about themselves. Sixty-two per cent of the companies use their data for research and development purposes, and 78 per cent have information-sharing agreements with third parties.
One major market is medical and pharmaceutical studies.
DNA testing companies give you information about your health markers, but they actually know a great deal more than they are telling you,”
Julia Creet
Creet points out. In January 2020, 23andMe announced that it had sold rights to the Spanish pharmaceutical company Almirall for an anti-inflammatory drug it developed in partnership with the company.
And more commercial uses for DNA are on the way. AncestryProGenealogists, for example, is offering a service to help customers become citizens of countries where ancestry is a factor in determining citizenship. In a completely different vein, Ancestry offers its clients ethnically appropriate music playlists, based on the logic that if you have 17 per cent Irish genes, you might want to listen to Irish music!
The path to an ethical gene
The fact that consumers pay for genetic testing and the different services that come with it, while companies demand ownership of the genetic data – which they accumulate in huge databases and sell to the highest bidder – is raising ethical questions about commercial DNA testing in general. Although companies do obtain the donor’s consent to sell their genetic information, they don’t tell donors what use third parties will make of it.
While there are no known cases of genetic identity theft yet, the risk of scams will rise as the value of DNA increases – particularly given that a number of governments are considering using DNA to create a “digital identity” for citizens. Private DNA testing companies maintain that the data they pass on to third parties has been rendered anonymous. However, Professor Erlich’s team was able to figure out the identity of a person using their “anonymous” genetic code in less than a day.
Julia Creet has received financial support for her documentary film from the Office of the Privacy Commissioner of Canada. It’s fair to say that Canada’s privacy laws themselves need to be updated, not just in the area of DNA testing, but for all matters relating to personal information in cyberspace. As a Consumer Reports white paper on genetic testing explained: “The regulatory gap around DTC (direct-to-consumer) genetic testing means there is no legal guarantee that this information will remain private. As the marketplace for health technology evolves, existing health privacy protections leave consumers’ sensitive data exposed.”
Canada and the United States are grappling with the same challenges. In 2017, Canada passed the Genetic Non-Discrimination Act, which prohibits genetic testing from being required as a condition of employment or for the provision of a good or service, or as a condition of entering into a contract, including an insurance contract. However, the law does not cover the sale of the information to third parties. “Since American companies do the testing, your DNA is sent to the U.S., so the law that applies is American, not Canadian,” Creet says.
The American legislation governing DNA use, The Genetic Information Nondiscrimination Act of 2008 (GINA), is not much better, she says. The Consumer Reports White Paper on Genetic Testing notes: “Though GINA provides substantial protections, it is limited in scope and focuses on discrimination based off information, not the protection of the information once it is in possession of the company.”
Justin Brookman, director of privacy and technology policy at Consumer Reports, explains in the report why it is particularly important for governments to take action on this issue: “Genetic information is not like a car or a piece of clothing that can be resold without further consideration,” he writes. “[…] Genetic information is deeply personal, and an individual might not be comfortable with their most personal information being used in ways they cannot foresee at the time of sale.”
As current law is written, the only way for consumers to protect themselves is by avoiding genetic tests for genealogical purposes altogether. “The first question a consumer needs to ask is: do I have enough family? Am I happy with the family I have? Most people have all the family they need.”
But that might not solve the problem either. After all, if your relatives give away their genetic code they’ll also be giving away yours!
The documentary
The documentary film Data Mining The Deceased: Ancestry and the Business of Family was directed and produced by Julia Creet, a professor of English at York University in Toronto whose research bridges literature and history. The film was funded by the Office of the Privacy Commissioner of Canada. Its goal, in the words of the Office, was “to broaden public discussion of genetic genealogy and privacy issues with respect to genealogical records and direct-to-consumer genetic genealogy tests.” The documentary includes additional background and frequently asked questions so viewers can learn more about the topic. The film can be accessed from Julia Creet’s website.