The Hidden Personal Cost of Genealogy Websites
Before discovering where you came from, ask where that DNA is going.
Posted February 1, 2021 | Reviewed by Lybi Ma
Fuelled by a burgeoning pantheon of commercial websites, genealogy has become a popular pastime, nearly unseating a rather less family-friendly online pursuit. When new-school genetic science married old-school family history, family trees grew to crazy proportions. By 2019, over 26 million consumers had taken an at-home DNA test.
Ninety-one percent of us don’t read terms of service before accepting them, and the privacy paradox means our privacy concerns don't match our privacy behaviours. In one study, people accepted just 7 Euros for their browsing history, which can reveal far more about you than the stuff you deliberately publish online.
You're free to decide for yourself. But what personal consequences do your data-privacy choices have for other people?
The true power of genetic data
DNA is personal to you. Even if it's stripped of identifying information, the same genealogy websites you submitted it to can be used to re-identify you. ‘Genetic hacker’ Yaniv Erlich has demonstrated this by taking an anonymous person’s genetic material and using genealogy sites to eventually name them. The initial pool of possibilities was the population of the US: 300 million people.
Genetic data also have the power to incriminate. Law enforcement used genealogy websites to catch the Golden State Killer, a good outcome that was achieved at a questionable privacy cost. The serial murderer's arrest was an example of using someone's DNA to track down not that individual, but one of their unsuspecting relatives.
When genetic data leaps the confines of a genealogy site, the information can affect unwitting bystanders in myriad ways. Paradoxically, DNA is specific to you and never just about you. Like the Internet itself, it connects people across generations and the world.
Other people's privacy
‘Decisional privacy’ is the idea that you are free to determine who you associate with and who you consider to be your family. Certain types of families are particularly reliant on decisional privacy for their emotional security and well-being, including those formed through surrogacy, adoption, or artificial insemination.
In Dani Shapiro’s book Inheritance: A Memoir of Genealogy, Paternity, and Love, she describes how a DNA test revealed a family secret: her father was not her father. As Shapiro grappled with a personal and religious identity crisis and searched for a new sense of belonging, she contacted someone who never expected it: the erstwhile medical student who once anonymously donated his genetic material.
In another recent example, a mother who used donor sperm to conceive submitted her daughter’s genetic sample to a commercial genealogy website. When she identified and contacted one of her daughter's biological relatives, she didn't think she was doing anything wrong.
However, the relative contacted the cryobank, who threatened a lawsuit for contract violation. In a devastating blow, they also denied the mother the sperm she'd wanted to use to give her daughter a biological sibling someday.
This mother had never read the terms and conditions. The Age of Surveillance Capitalism argues that these terms are long and complicated on purpose. When we don't understand, we're more likely to surrender permission for companies to sell our data.
Is genetic information protected?
In some places (like the European Union), genetic data is protected as personal information. In others (like the US) it's a different story. In America, protections are strong for DNA if it's submitted to a doctor, but non-existent if it's posted off to a commercial genealogy website.
Because your genetic data can reveal predispositions to health conditions, in certain hands it could affect health insurance premiums for you and your relatives. There's also no accounting for future, unforeseeable applications of your DNA, including ones that might endanger the human rights of individuals and whole communities.
In various ways, then, your relatives and descendants could be affected by your DNA disclosures even if they haven't been sequenced themselves. It’s a scenario straight out of sci-fi, but it’s not fantasy anymore.
Cause for optimism?
In 2020, one major genealogy website laid off some of its workforce, citing a 'retracting market'. Perhaps this means people are becoming more aware digital citizens, and more clued up about the threats to privacy.
Also In 2020, the largest cryobank in the US announced it would start giving genetically verified ancestry and health information, guarding the anonymity of donors and providing a privacy-protective alternative to commercial sites.
And huge databases of genetic information can be a powerful force for good, when they're not in the hands of powers that exploit data for financial gain or political power. The individual identified by Yaniv Erlich was a young woman with a rare congenital disorder, whose life was transformed because of our passion for genealogy.
Look before you leap
- Never assume your genetic data will remain confined to a genealogy website. Their business models usually rely on using your data to make profits.
- Remember that your decisions could have emotional, physical, and social consequences for both living relatives and your descendants, even if they never get genetically tested themselves.
- Opt out. The most privacy-protective option is to not submit your DNA. If you do go ahead and don't want any surprises, tick the box that says you're not open to being contacted.
- Use your voice and vote. Speak to your elected representatives. Ultimately, only the law will be able to limit what private companies are allowed to do with your genetic data.
- Remember the trade-off fallacy: an exchange between two parties who hold unequal, mismatched power, and knowledge is not a fair swap.
- Guard your DNA as a precious asset. The potential uses for it are limitless, and it's valuable to data brokers.
From our current vantage point, the risks and benefits of commercial, DNA-powered genealogy sites are too difficult to accurately calculate. They offer us powerful cutting edge tools to discover fascinating things. Just because we can, though, doesn't mean we should.
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