The Hidden Personal Cost of Genealogy Websites
Discovering our family history can greatly affect our sense of identity and belonging. But what are the potential costs?
Source: Nathana Reboucas / Unsplash
Fueled by a burgeoning pantheon of business websites, genealogy has become a popular pastime, almost to dethrone a rather less family-oriented online activity. When new-school genetic science mated to old-school family history, family trees grew to crazy proportions. By 2019, more than 26 million consumers had done a DNA test at home.
You are free to decide for yourself. But what personal consequences do your data privacy choices have for the other people?
The real power of genetic data
DNA is personal to you. Even though it lacks credentials, the same genealogy websites you submitted it to can be used to re-identify you. The “genetic hacker” Yaniv Erlich demonstrated it by taking genetic material from an anonymous person and using genealogy sites to possibly name them. The initial pool of possibilities was the population of the United States: 300 million people.
Genetic data also has the power to incriminate. Law enforcement agencies have used genealogy websites to catch the Golden State Killer, a good result which was obtained at a questionable cost of confidentiality. The serial killer’s arrest was an example of using someone’s DNA to find not this individual, but one of his unsuspecting relatives.
When genetic data crosses the boundaries of a genealogy site, the information can affect unwitting passers-by in multiple ways. Paradoxically, DNA is specific to you and never just about you. Like the Internet itself, it connects people across generations and the world.
The privacy of others
‘Decision-making confidentialityIt 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 dependent on confidential decisions for their emotional security and well-being, including those formed through surrogacy, adoption or artificial insemination.
In Dani Shapiro’s book Heritage: a memory of genealogy, paternity and love, she describes how a DNA test revealed a family secret: his father was not his father. As Shapiro grappled with a personal and religious identity crisis and searched for a new sense of belonging, she contacted someone who did not expect it: the former medical student who once donated its genetic material anonymously.
In another recent example, a mother who used donor sperm to conceive submitted her daughter’s genetic sample to a commercial genealogy site. When she identified and contacted one of her daughter’s biological parents, she didn’t think she was doing anything wrong.
However, the parent contacted the cryobank, which threatened legal action for breach of contract. In a devastating blow, they also denied the mother the sperm she had wanted to use to one day give her daughter a biological sibling.
This mother had never read the terms and conditions. The era of surveillance capitalism argues that these terms are intentionally long and complicated. When we don’t understand, we’re more likely to give up 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 (such as the United States), it’s a different story. In America, protections are strong for DNA if it is submitted to a doctor, but non-existent if it is posted on a commercial genealogy website.
Because your genetic data may reveal predispositions to health problems, in some hands it could affect health insurance premiums for you. and your parents. There is also no accounting for future and unpredictable applications of your DNA, including those that could endanger the human rights of individuals and entire communities.
In various ways, therefore, your parents and offspring could be affected by your DNA disclosures even if they were not themselves sequenced. It’s a storyline straight out of science fiction, but it’s not fantasy anymore.
Reason for optimism?
In 2020, a great genealogy site laid off part of its workforce, citing a “receding market”. Perhaps this means that people are becoming more aware digital citizens and more aware of privacy threats.
Also in 2020, the largest cryobank in the United States announcement it would begin to provide genetically verified ancestry and health information, preserving donor anonymity and providing a privacy protection alternative to commercial sites.
And huge databases of DNA information can be a powerful force for good, when not in the hands of powers that exploit the data for financial or political gain. The individual identified by Yaniv Erlich was a young woman with a rare congenital disease whose life was transformed due to our passion for genealogy.
Think before acting
- Never assume that your genetic data will remain confined to a genealogy website. Their business models typically rely on using your data to make a profit.
- Remember that your decisions can have emotional, physical, and social consequences for living parents and your descendants, even if they themselves never undergo genetic testing.
- Opt out. The most privacy-protective option is not to submit your DNA. If you are going ahead and don’t want any surprises, check the box indicating that you are not ready to be contacted.
- Use your voice and vote. Talk to your elected officials. Ultimately, only the law can limit what private companies are allowed to do with your genetic data.
- Remember the compromise error: an exchange between two parties who hold unequal and discordant power and knowledge is not a fair exchange.
- Keep your DNA as a valuable asset. The potential uses are limitless and are invaluable for data brokers.
From our current perspective, the risks and rewards of commercial DNA-powered genealogy sites are too difficult to calculate with precision. They give us powerful cutting edge tools to discover fascinating things. Just because we can, however, this does not mean that we should.
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