Genetic testing; limited knowledge sought
September 12, 2024 3:12 AM Subscribe
As a family we are interested in genetic testing to the degree that it can convey information about ethnicity but no one wants to know health problems that may or may not occur in the future. We're also concerned about using our data to triangulate a distant relative who may be implicated in some crime.
What is the most lightweight, reliable way to get our genetics ingredients list without giving up our privacy or anyone else's while also protecting us from future medical knowledge that is going to make us neurotic? Are any providers less or more trustworthy?
This is for fun but also genuine interest.
What is the most lightweight, reliable way to get our genetics ingredients list without giving up our privacy or anyone else's while also protecting us from future medical knowledge that is going to make us neurotic? Are any providers less or more trustworthy?
This is for fun but also genuine interest.
I have an extremely embarrassing and privacy-compromising reason I even have an account on a DNA site, and basically regret it. The ethnicity stuff is interestingly vague enough to have about 2 conversations about. The medical stuff is laughable and when it's not fear-inducing, it's stupid. I agree completely with what basalganglia has written above.
Regarding your concern (potentially hypothetical?) for a distant relative being caught for some crime: the world of finding John and Jane Doe's, adopted parents and kids, killers and rapists, and all manner of cold cases through genetic genealogy is, to me, a net good. You can find some fascinating write-ups on all of the privacy concerns out there (this is a good primer), and I am in favor of passing federal legislation that would clarify where and when this type of methodology can be used by law enforcement. I should note that many of these investigations are not being done by law enforcement -- adoptive parent searches and John/Jane Does, for instance, are often being performed by civilian volunteers.
My understanding of where it stands right now is that it is difficult for the police to get warrants to any DNA site precisely because of how much 'spread' the investigation can have, and how many people's data is swept up in this type of investigation, which is maybe part of your own concern. I'm not saying it doesn't happen, and the article I linked above goes through that. I believe some sites, like GEDMatch, allow you to make the decision about whether your DNA is used in what types of searches (adoptee searches, for instance, or John/Jane Does, or murders and rapes).
I believe there have been very few examples in the wild of DNA matching being done where the result was that someone was caught for a minor crime. I can't recall the specifics, but I believe there was an incidental identification of someone who hadn't paid child support or something. I bring this up because -- again, as far as I've seen -- genetic genealogy is something used to find people who have committed serious crimes, the kinds of crimes people generally want people to be caught for.
It's not clear to me from your question why you might want to protect this distant relative if they had indeed committed such a serious crime. But there's undoubtedly nuance here that I accept -- family and privacy and the long and complicated history of law enforcement in America, and so forth.
I will point out that if basically anyone in your entire extended family has ever done this, the genie is already out of the bottle for your hypothetical relative. I didn't spend much time searching, but a 2018 (!! - that was forever ago in this topic!) article in the NYT says 90% of Northern European descended people would be identifiable using these methods in 2 years, and that was 6 years ago. Maybe that doesn't describe your family, but I bet that percentage ain't zero no matter your heritage. So if your distant relative did something worthy of a full-fledged genetic genealogy investigation, it's likely they would be caught with or without your spit in a cup.
Edited to add -- I didn't really address the spirit of your question, and I apologize. I've heard better things about GEDMatch, a site I mentioned in my response, but you have to get your DNA tested somewhere else and submit it to them, which complicates that as a reasonable response. Like the previous replies, I have doubts about the whole endeavor for you and your family considering the concerns you've raised, which is why I've answered as I did.
posted by AbelMelveny at 6:06 AM on September 12 [3 favorites]
Regarding your concern (potentially hypothetical?) for a distant relative being caught for some crime: the world of finding John and Jane Doe's, adopted parents and kids, killers and rapists, and all manner of cold cases through genetic genealogy is, to me, a net good. You can find some fascinating write-ups on all of the privacy concerns out there (this is a good primer), and I am in favor of passing federal legislation that would clarify where and when this type of methodology can be used by law enforcement. I should note that many of these investigations are not being done by law enforcement -- adoptive parent searches and John/Jane Does, for instance, are often being performed by civilian volunteers.
My understanding of where it stands right now is that it is difficult for the police to get warrants to any DNA site precisely because of how much 'spread' the investigation can have, and how many people's data is swept up in this type of investigation, which is maybe part of your own concern. I'm not saying it doesn't happen, and the article I linked above goes through that. I believe some sites, like GEDMatch, allow you to make the decision about whether your DNA is used in what types of searches (adoptee searches, for instance, or John/Jane Does, or murders and rapes).
I believe there have been very few examples in the wild of DNA matching being done where the result was that someone was caught for a minor crime. I can't recall the specifics, but I believe there was an incidental identification of someone who hadn't paid child support or something. I bring this up because -- again, as far as I've seen -- genetic genealogy is something used to find people who have committed serious crimes, the kinds of crimes people generally want people to be caught for.
It's not clear to me from your question why you might want to protect this distant relative if they had indeed committed such a serious crime. But there's undoubtedly nuance here that I accept -- family and privacy and the long and complicated history of law enforcement in America, and so forth.
I will point out that if basically anyone in your entire extended family has ever done this, the genie is already out of the bottle for your hypothetical relative. I didn't spend much time searching, but a 2018 (!! - that was forever ago in this topic!) article in the NYT says 90% of Northern European descended people would be identifiable using these methods in 2 years, and that was 6 years ago. Maybe that doesn't describe your family, but I bet that percentage ain't zero no matter your heritage. So if your distant relative did something worthy of a full-fledged genetic genealogy investigation, it's likely they would be caught with or without your spit in a cup.
Edited to add -- I didn't really address the spirit of your question, and I apologize. I've heard better things about GEDMatch, a site I mentioned in my response, but you have to get your DNA tested somewhere else and submit it to them, which complicates that as a reasonable response. Like the previous replies, I have doubts about the whole endeavor for you and your family considering the concerns you've raised, which is why I've answered as I did.
posted by AbelMelveny at 6:06 AM on September 12 [3 favorites]
I cannot speak to privacy aspects of commercial testing, but I do know that 23 and Me at least divides their testing packages between the ethnicity test and the medical test so that you can opt for ethnicity without the medical package (for cheaper). You can opt in or not to allow relatives to find you or not in an optional genealogy feature.
Like I said however, if this is subpoena able by law enforcement I do not know.
posted by The 10th Regiment of Foot at 6:15 AM on September 12 [3 favorites]
Like I said however, if this is subpoena able by law enforcement I do not know.
posted by The 10th Regiment of Foot at 6:15 AM on September 12 [3 favorites]
I used 23andMe and the ethnicity info it gave me matches what little info I have on my birthparents (literally two self-reported, or possibly one self-reported and one secondhand, answers to the "ethnicity" question on a short form.) Is this useful? Not to me, especially, but you can make that call.
However! I also discovered a half-sibling, which, because I knew I was adopted (and because she knew our father was a massive piece of shit and she was long estranged from him) wasn't a huge crisis for anyone, but is an excellent example of the kind of disruption this info can be. Even the ethnicity question might be disruptive - as bullshit as it may be, what happens if members of your family don't have quite the expected results, or results that are improbably different from one another? It's possible that this could be quite the little explosion.
posted by restless_nomad at 6:24 AM on September 12
However! I also discovered a half-sibling, which, because I knew I was adopted (and because she knew our father was a massive piece of shit and she was long estranged from him) wasn't a huge crisis for anyone, but is an excellent example of the kind of disruption this info can be. Even the ethnicity question might be disruptive - as bullshit as it may be, what happens if members of your family don't have quite the expected results, or results that are improbably different from one another? It's possible that this could be quite the little explosion.
posted by restless_nomad at 6:24 AM on September 12
convey information about ethnicity
stories can be a nice way to learn about ethnicity
[pbs:] What is the difference between race and ethnicity?
We're also concerned [Human Rights Watch:] "Members of racial, ethnic, and other minorities or vulnerable groups often face harassment, arbitrary detention, and abusive treatment by the law enforcement apparatus and disparate treatment by prosecutors and the courts."
posted by HearHere at 6:31 AM on September 12
stories can be a nice way to learn about ethnicity
[pbs:] What is the difference between race and ethnicity?
We're also concerned [Human Rights Watch:] "Members of racial, ethnic, and other minorities or vulnerable groups often face harassment, arbitrary detention, and abusive treatment by the law enforcement apparatus and disparate treatment by prosecutors and the courts."
posted by HearHere at 6:31 AM on September 12
Vox's 2019 article is still good re the limits and ever-changing answers of ancestry testing. Essentially every company has a unique algorithm based on internal DNA data of self-reported ancestry and as that database changes, so do the answers it gives. And all of the databases are heavily Eurocentric, especially towards Great Britain. Data from the indigenous populations of Asia, Africa, Australia, Polynesia, Canada and North America is also lacking. IME, ancestry testing generally gives no more info than a well-versed relative who's in on all the immigration records and local history of the times.
posted by beaning at 6:54 AM on September 12 [2 favorites]
posted by beaning at 6:54 AM on September 12 [2 favorites]
My experience is that the commercial DNA test is not really very interesting actually. My sister took one and the results were pretty much as expected based on family history. The percentages were maybe a little interesting (as the Vox article above notes, every person inherits different parts of their parents DNA)--but also you can tell she takes more after our mom's side of the family tree just by looking at her, so....
The FTC last year issued some guidelines around biometric privacy which should in theory mean that US companies will abide by their own stated privacy policies at least.
However, I would encourage that if you or someone in your family is adopted or donor-conceived that that person take a proper genetic test aimed at identifying potential medical issues, because although you may not want to worry, not having a proper medical history is dangerous, and, unfortunately, the laws surrounding adoption and the lack of regulation for donor conception put those groups at higher risk. (Check out Laura High @laurahigh5 on Tiktok if you want the rundown on the importance of genetic testing for people who are donor conceived.)
posted by radiogreentea at 9:28 AM on September 12 [1 favorite]
The FTC last year issued some guidelines around biometric privacy which should in theory mean that US companies will abide by their own stated privacy policies at least.
However, I would encourage that if you or someone in your family is adopted or donor-conceived that that person take a proper genetic test aimed at identifying potential medical issues, because although you may not want to worry, not having a proper medical history is dangerous, and, unfortunately, the laws surrounding adoption and the lack of regulation for donor conception put those groups at higher risk. (Check out Laura High @laurahigh5 on Tiktok if you want the rundown on the importance of genetic testing for people who are donor conceived.)
posted by radiogreentea at 9:28 AM on September 12 [1 favorite]
As beaning says above, the answers they give you are based on their algorithms plus information from the submitters about origins they know of. My niece is 1/2 SE Asian and white Ashkenazi Jewish and while Ancestry DNA could do a good job on the European side of her ancestry, they were abysmal on the SE Asian side. There have simply not been enough participants from that region to give them a decent sampling base to work from. What we know from relatives was much more useful.
For many N American families, the potential for disruptive discoveries is higher than you may expect. In the States, the silence of generations about illicit relationships, children of rape or incest, and forced giving up of babies has led to many families learning that their relationships are different than they were told. The TV show Finding Your Roots gives a great example of this with every episode, some more disturbing to the participants than others. Fred Armisen discovering that his grandfather was not Japanese, but Korean, and the various issue around that was an amazing episode.
posted by drossdragon at 9:35 AM on September 12
For many N American families, the potential for disruptive discoveries is higher than you may expect. In the States, the silence of generations about illicit relationships, children of rape or incest, and forced giving up of babies has led to many families learning that their relationships are different than they were told. The TV show Finding Your Roots gives a great example of this with every episode, some more disturbing to the participants than others. Fred Armisen discovering that his grandfather was not Japanese, but Korean, and the various issue around that was an amazing episode.
posted by drossdragon at 9:35 AM on September 12
ancestry testing generally gives no more info than a well-versed relative who's in on all the immigration records and local history of the times
tbh I could see real value there for families that don't have such records
imho the real proximate risk is that Aunt Suzie turns out to have radically different genetic ancestry numbers than her siblings and now the question of genetic parentage suddenly becomes fraught
posted by BungaDunga at 10:57 AM on September 12 [1 favorite]
tbh I could see real value there for families that don't have such records
imho the real proximate risk is that Aunt Suzie turns out to have radically different genetic ancestry numbers than her siblings and now the question of genetic parentage suddenly becomes fraught
posted by BungaDunga at 10:57 AM on September 12 [1 favorite]
Currently, no (well, not without a lot of money). Although there are people noting this absence and looking to make money on this space. Privacy is expensive. Also, there isn't really a thing like race in genetics. It is more genetic origins - regions where your ancestors lived for long periods of time. Also, the genetic tests here are not as accurate if you are from certain genetic regions (i.e. - Asia) because the companies have not gathered or do not have access to genetic information in these regions.
Groups can also hire a geneticist and lab to help them with this sort of thing but it costs money and/or some sort of charity and/or research - i.e. being hired by rabbis to help test their synagogues to determine whether they carry genetic mutations.
posted by ichimunki at 11:24 AM on September 12
Groups can also hire a geneticist and lab to help them with this sort of thing but it costs money and/or some sort of charity and/or research - i.e. being hired by rabbis to help test their synagogues to determine whether they carry genetic mutations.
posted by ichimunki at 11:24 AM on September 12
It's a bit tangential to the question, but given the comments folks have made about testing in general- I have two very distinct ethnicities. As a data point, Ancestry.com's results were centered on my paternal and maternal grandparents respective hometowns. Is this info useful? It was sort of nice to confirm the oral family history but hardly life changing. I have definite misgivings about the privacy angle and in hindsight am not sure I would do this again. At the time Ancestry.com didn't provide any medical info, but I'm not sure if that's still the case.
posted by Larry David Syndrome at 7:25 PM on September 12
posted by Larry David Syndrome at 7:25 PM on September 12
I had a full genetic work up for medical issues and it was SO different from23andMe for privacy/hippa stuff. Also very much more expensive. You can opt out of much of the info and have your data erased after. We did 23andMe to see if I could find a biological dad but even though I was expecting it, it was still a shock to have it confirmed that I am an affair child. If you have any concerns about that, really pause and process first. You can opt out of family tree stuff but it’s still a shock.
Avoid the non-US places because Hippa is some protection . Maybe try a Germany based company - somewhere with decent privacy laws including the right to delete your data.
posted by dorothyisunderwood at 2:23 AM on September 13
Avoid the non-US places because Hippa is some protection . Maybe try a Germany based company - somewhere with decent privacy laws including the right to delete your data.
posted by dorothyisunderwood at 2:23 AM on September 13
Avoid the non-US places because Hippa is some protection
23andme is not covered by HIPAA because they aren't a healthcare provider.
posted by BungaDunga at 11:33 AM on September 13 [1 favorite]
23andme is not covered by HIPAA because they aren't a healthcare provider.
posted by BungaDunga at 11:33 AM on September 13 [1 favorite]
You absolutely cannot use these services without "giving up our privacy or anyone else's", either intentionally for profit, for legal reasons, or accidentally. Full stop.
posted by love2potato at 12:16 PM on September 13 [1 favorite]
posted by love2potato at 12:16 PM on September 13 [1 favorite]
You are not logged in, either login or create an account to post comments
There is more genetic variability within "race" (as defined by the US Census categories -- sociological categories rather than biological) than between "races." Not to mention that every country categorizes people differently -- this, more than anything, is evidence that these are human-made classifications, not biological.
The slight exception to this is populations where there has been a founder effect or a genetic bottleneck due to generations of intermarrying, thus increasing the carrier rate of recessive traits (e.g. Tay-Sachs, nephropathic cystinosis, the Habsburg chin). It's still not race/ethnicity in a biological sense, but rather an example of extreme social effect on the gene pool. Plus, you said you are not interested in medical information.
For a more robust discussion, go check out The Mismeasure of Man, by the late, great Stephen Jay Gould. It's more than 40 years old so does not directly address direct-to-consumer genetic testing, but Gould was one of the most eloquent critics of genetic determinism, and you could do worse than spending a couple of hours hanging out with him.
(Sorry if this comes across as a wet blanket on what you had hoped was a fun little family project. But there are more enjoyable, safer ways to tease out your family origins than spitting in a cup and trusting a for-profit company to safeguard your genetic information!)
posted by basalganglia at 4:03 AM on September 12 [22 favorites]