What are the downsides of DNA testing?
April 1, 2024 12:46 AM   Subscribe

I want to do a DNA test via Ancestry. My sister and I might have an unknown niece/nephew in Britain, and it's not impossible that we have an another half-sibling or two in Australia. My sister does not want to know of any additions to the family and has expressed concern about having identified family DNA in the ownership of a data company.

My sister is exhausted by life and does not have the spoons for a new surprise relative. I get that. I hardly see her myself. Keeping news from her won't be hard. But what does she mean about ownership of DNA? What are the outcomes of DNA testing on potential part owners of that DNA (sister, her offspring, etc)? I'm willing to not get the test if I should be as concerned about it as she is. Context: Britain and Australia.
posted by anonymous to Society & Culture (13 answers total) 8 users marked this as a favorite
 
This Snopes link does a decent job of outlining the risks. Strictly speaking, your deal with Ancestry is to license their use of your DNA, not permanent transfer of ownership. But the terms of service are long and detailed, and you may not understand or like all the ways that the license allows them to use your data.

In addition, there is of course no guarantee that your data will not be breached/leaked, as happened in December for millions of 23 and Me users. As your blood relative, your sister has a vested interest in your data because information you share voluntarily or involuntarily is of course permanently, directly connected to her and can be used, e.g., to infer her health information or by law enforcement to identify suspects.
posted by hydropsyche at 3:33 AM on April 1 [12 favorites]




Aside from the very real privacy risks others have already commented on, you’ll really want to think through what finding these other family members will mean to your life. If you can find a counsellor to discuss those more emotional impacts and help you through the aftermath of that, that would be a wise bit of preparation. Scenarios could include things like, what if those family members want nothing do to with you? What if discovering this family connection upends other relationships in the family? What if those possible family members aren’t in the Ancestry database at all, so you don’t find them?

There are lots of really big and complicated questions you’ll want to consider just family wise, aside from the privacy issues. But also, if your sister has privacy concerns you’ll want to ask yourself if this is something you really want to do against her wishes. It might feel like a “just you” decision… but because you’re related it is really a “both of you” decision.
posted by eekernohan at 5:03 AM on April 1 [6 favorites]


My answer is caveated: I'm an adoptee who knew all the risks of giving away my DNA to find bio relatives. I ended up finding family through other means after I used 23 and Me, but have since been contacted by an additional surprise member of the family through that service. I helped her integrate into the new bio family that I had found on my own.

In addition to the good advice already above, I should add that it's possible your sister and other of your relatives will be findable by a surprise relative even if you're the only existing family member using the service. They might connect your name to other names via publicly available info like their home addresses and any other info that commercial interests may make available online in the UK and Australia. For example here in the US, with just a person's name, I can find their spouse's name, likely parents and sibling names, home address, property purchase price, court records, current jobs, etc. Everything in this list is public info, some of it provided by the people themselves, some by government agencies, some by commercial entities like credit reporting bureaus.

DNA is not necessary for any of this, of course. But if you were to find surprise relatives using Ancestry, there's not much that would stop a curious surprise relative from identifying your sister and other family--depending on what publicly searchable data is available in your location.
posted by ImproviseOrDie at 5:18 AM on April 1 [9 favorites]


Reality and fiction have both provided a long list of reasons why this kind of testing is potentially problematic.

1) Identification of you or your relatives based on the presence of your genetic material in a database. Do you want to be marketed to for the rest of your life based on companies knowing you have a genetic marker reflecting increased likelihood of X problem? You might care or not, but it's a thing.

2) Identification of you or your relatives based on the presence of your genetic material in a database by law enforcement. Do you want yourself or a relative to be tracked down as a person of interest for smoking weed? Having an abortion? Speaking at a legal public protest against the actions of a nation? All feasible.

3) Misidentification of you or your relatives based on the presence of your genetic material in a database. See 1), bearing in mind the repeated problems associated with use of DNA in a forensic context.

4) Misidentification of you or your relatives based on the presence of your genetic material in a database by law enforcement See 2), bearing in mind the repeated problems associated with use of DNA in a forensic context.

5) Theft or sale of your genetic material or information. Sky's the limit here.

6) Prosecution, conviction, or persecution of you or a relative based on future commission of crimes or categorization of currently legal actions or genetic traits. You want to be convicted at a future date for use of a condom without a license? Being present in a non-state-sanctioned religious gathering? Having a genetic marker for a form of disability that will be considered legally anathema thirty years from now?

7) Private or public entities profiting from the use of your genetic material or information without your consent, or your receiving any benefit from their profit. Henrietta Lacks' case is one of the most prominent examples of this of which I'm aware.

8) Being preemptively triaged and deemed uninsurable, due to genetic markers for a medical condition known to be difficult and expensive to treat. (I assume this is currently more science fiction than reality, wealth differences aside, but my assumption is that it's coming down the road.)
posted by cupcakeninja at 6:02 AM on April 1 [15 favorites]


It might feel like a “just you” decision… but because you’re related it is really a “both of you” decision.

And potentially any other genetic relatives you or your sister might have
posted by trig at 6:24 AM on April 1 [5 favorites]


1. Privacy
2. Privacy
3. You may find out something that will be very upsetting.

My cousin found out she really isn't my cousin, and was the product of an affair her mother had. That was challenging, but thankfully both she and her mother -- and (now half) sisters and brothers -- have been able to move on.

4. Privacy
posted by terrapin at 6:31 AM on April 1 [7 favorites]


But what does she mean about ownership of DNA? What are the outcomes of DNA testing on potential part owners of that DNA (sister, her offspring, etc)?

She means there's a real chance that her insurance rates go through the roof or maybe it becomes impossible for her to insure her children because of your idle curiosity and she's right about that.
posted by mhoye at 7:01 AM on April 1 [8 favorites]


My sister and I might have an unknown niece/nephew in Britain, and it's not impossible that we have an another half-sibling or two in Australia.

I wonder if, given the specificity of the relations you mention here, you could determine with greater certainty their existence by investigating your family in a more oblique and more analog way. For example, you could assemble a family tree, examine old newspapers and family photos for relatives you didn’t know existed, and chat to your older relatives for details you can’t easily find, like your great-grandmother’s second husband’s hometown. You may be surprised by how interested folks are in “setting the record straight”, and in the course of your research might be connected with these possible relatives without giving up your genetic data. Ancestry.com is very often available for free through your library and at least one library I’m a member of allows access via their portal at home.
posted by mdonley at 7:49 AM on April 1 [2 favorites]


Being preemptively triaged and deemed uninsurable, due to genetic markers for a medical condition known to be difficult and expensive to treat. (I assume this is currently more science fiction than reality, wealth differences aside, but my assumption is that it's coming down the road.)

I promise that this is not science fiction. Insurance companies in the US, prior to the Affordable Care Act, frequently denied coverage to anyone that they felt would be a drag on the risk pool and they would dearly love to get their hands on your genetic data in the interest of “lowering costs to consumers.” If it means that they make more money, insurance companies will move heaven and earth to eliminate privacy laws around genetic information.

I wouldn’t get DNA testing. Tracing people through genealogical research is a fantastic idea.
posted by corey flood at 10:32 AM on April 1 [2 favorites]


To say it succinctly, if you submit your DNA to one of these services, your sister could get phone calls out of the blue from people who think they might be related to her.
posted by Winnie the Proust at 2:56 PM on April 1 [3 favorites]


I mean, while all of the above may or may not be true, much of this can be mitigated by not putting your sister or any siblings on your family tree. If you want to operate with various levels of appropriate paranoia to protect your privacy, there are methods.
posted by DarlingBri at 4:45 PM on April 1 [3 favorites]


Someone I know found out she was conceived with donor sperm due to a 23andme test. This kind of news can absolutely upend what you thought you knew about your family. It's not something to undertake lightly. And that's before you even start thinking about the privacy implications of having something as unchangeably "you" as your DNA in the hands of a corporation that may not protect it with care. Ultimately if it gets compromised and used against you, you can't just change it and move on with your life.
posted by potrzebie at 5:18 PM on April 1


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