Holy Crap - How accurate are the Ancestry DNA matches?

[pixy0stix]

Jun 1, 2017 9:07:08 GMT -5 yaga said:

For those of you that are concerned for tin-foil hat reasons - would you ever allow your DNA to be sequenced for medical reasons? It's often done for diagnostic purposes - what type of mutations you have in a tumor to determine what treatment you would likely respond to or for research purposes - to learn more about cancer/biology in general. Different types of methods are used and some look at just a few specific genes. In fact, some cancers do have a genotyping aspect to diagnosis.

I have had my DNA tested for IF reasons. Doing that, and going through Ancestry and 23&me are apples and oranges. The legalities of the private companies holding the dna are pretty scary. They can do whatever they want with it, whereas the medical companies have procedures in place where you know exactly what can (legally) be done with it.

[pixy0stix]

Jun 1, 2017 9:13:02 GMT -5 mofongo said:

I have a question. I understand why you'd need life insurance prior to getting certain genetic testing done, but I didn't think these types of ancestry tests looked at any of that? That's not how the commercials sound anyway.

You give those companies the rights to your DNA. There's concern that those companies will then turn around and sell what they've gathered, such as to insurance companies who will test your DNA for genetic conditions. Basically, once you send it off, it's out of your hands.

[zoomzoom]

Jun 1, 2017 9:21:27 GMT -5 pixy0stix said:

Jun 1, 2017 9:13:02 GMT -5 mofongo said:

Basically, once you send it off, it's out of your hands.

Holy shit no.  I'll sit on the tin foil hat bench.

[followyourarrow]

I'm not totally sure who my bio dad is. My mom to this day doesn't understand how biology works, she insists that you can get pregnant multiple times per month and she can feel ovulation. She believes it was a particular man, but based on when I was born it's not necessarily possible because he was in jail for a month at that time conception should have occurred. I've had zero contact with him ever. So I'm curious, but too scared to do a DNA test and find out the results.

[yaga]

Jun 1, 2017 9:18:48 GMT -5 pixy0stix said:

Jun 1, 2017 9:07:08 GMT -5 yaga said:

For those of you that are concerned for tin-foil hat reasons - would you ever allow your DNA to be sequenced for medical reasons? It's often done for diagnostic purposes - what type of mutations you have in a tumor to determine what treatment you would likely respond to or for research purposes - to learn more about cancer/biology in general. Different types of methods are used and some look at just a few specific genes. In fact, some cancers do have a genotyping aspect to diagnosis.

I have had my DNA tested for IF reasons. Doing that, and going through Ancestry and 23&me are apples and oranges. The legalities of the private companies holding the dna are pretty scary. They can do whatever they want with it, whereas the medical companies have procedures in place where you know exactly what can (legally) be done with it.

But private companies are used to sequence DNA for medical reasons all the time. My genetic testing was through Counsyl, a private company. Breast cancer tumors are tested by Oncotype IQ, a private company. The patients treated at my center are sending their samples to Oncotype IQ, not our labs, to get their risk score. 

[5thofjuly]

Jun 1, 2017 9:42:40 GMT -5 yaga said:

Jun 1, 2017 9:18:48 GMT -5 pixy0stix said:

I have had my DNA tested for IF reasons. Doing that, and going through Ancestry and 23&me are apples and oranges. The legalities of the private companies holding the dna are pretty scary. They can do whatever they want with it, whereas the medical companies have procedures in place where you know exactly what can (legally) be done with it.

But private companies are used to sequence DNA for medical reasons all the time. My genetic testing was through Counsyl, a private company. Breast cancer tumors are tested by Oncotype IQ, a private company. The patients treated at my center are sending their samples to Oncotype IQ, not our labs, to get their risk score. 

The big key seems to be the rights you sign away in the fine print with the direct to consumer companies.  These articles are several years old, but definitely pertinent. 

www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/

www.ncbi.nlm.nih.gov/pmc/articles/PMC2920210/

And, while I've not seen where this currently stands, at least a couple of months ago Congress was considering using a GINA loophole to let your employer require you to take a DNA test or pay a large penalty.

www.forbes.com/sites/janetwburns/2017/03/14/gop-bill-could-force-employees-to-undergo-dna-testing-or-pay-thousands/#46ac671471fe

This is all very frightening to me, and, as far as I know, I don't have any genetic health conditions.

[iammalcolmx]

My cousin did it and found his Birth-mom.

[sessy]

Jun 1, 2017 8:15:33 GMT -5 yentl said:

Jun 1, 2017 0:00:18 GMT -5 sessy said:

My kids were conceived using a donor. I'm afraid if they did this they'd be matched with the donor which opens up all kinds of weirdness.

This happened to my friend who donated her eggs. I can't remember specifically how, but she never took the test... it matched the kids who took the test to one of her cousins or something and the parents then used that info to contact her on FB. She was pretty upset, especially since there's a process for contacting donors through the agency they used.

Sigh. Yeah, I didn't even consider that this would one day be a possibility when we selected an anonymous donor. It's complicated for both the donors who wish to remain unknown and those who are then matched with biological relatives.

[yaga]

Jun 1, 2017 10:03:08 GMT -5 5thofjuly said:

Jun 1, 2017 9:42:40 GMT -5 yaga said:

But private companies are used to sequence DNA for medical reasons all the time. My genetic testing was through Counsyl, a private company. Breast cancer tumors are tested by Oncotype IQ, a private company. The patients treated at my center are sending their samples to Oncotype IQ, not our labs, to get their risk score. 

The big key seems to be the rights you sign away in the fine print with the direct to consumer companies.  These articles are several years old, but definitely pertinent. 

www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/

www.ncbi.nlm.nih.gov/pmc/articles/PMC2920210/

And, while I've not seen where this currently stands, at least a couple of months ago Congress was considering using a GINA loophole to let your employer require you to take a DNA test or pay a large penalty. The thing about 

www.forbes.com/sites/janetwburns/2017/03/14/gop-bill-could-force-employees-to-undergo-dna-testing-or-pay-thousands/#46ac671471fe

This is all very frightening to me, and, as far as I know, I don't have any genetic health conditions.

I read the Scientific American one and I thought it was a little too reactionary. It is against their policy to share genetic data but WHAT IF they did?! Etc. 

There are tons of deidentified genetic databases that exist currently (I used www.ncbi.nlm.nih.gov/geo/ for my master's degree work). Honestly my point in saying this is that 23andme and ancestry aren't the only ways companies or organizations have your genetic data. This is the first time it's available to consumers just for funsies, but there are plenty of ways that your genetic data could have been analyzed and stored before. I mean, if you've signed up to be a bone marrow donor, they have it. 

This paragraph, for example, is completely true.

"Even though 23andMe currently asks permission to use your genetic information for scientific research, the company has explicitly stated that its database-sifting scientific work “does not constitute research on human subjects,” meaning that it is not subject to the rules and regulations that are supposed to protect experimental subjects’ privacy and welfare."

That is exactly what the datasets and analyses from the GEO are - data sifting and data mining. A research project done with this data would not require IRB oversight, for example, because nothing is there to link the data to a person. Gathering the data obviously requires oversight, but once it can't be linked to a patient, it's just numbers and genes that really mean nothing. I could download a set right now, run some analysis through a program, then publish a paper on the correlation between gene B and disease X. 

As for data breaches, people breaking the law, etc. Well that can happen at a hospital or university, too. I was a victim of identity theft because my university had a breach and all employee information was stolen. Somehow student records in the chemistry department were not destroyed properly and our SS numbers were on them. At my hospital, we have a million rules and regulations to prevent patient data from leaving our site/servers. But it just takes one moron who transfers stuff to an excel sheet and opens it on their personal laptop which then gets stolen or lost to potentially create a data breach. 

[5thofjuly]

Jun 1, 2017 10:25:03 GMT -5 yaga said:

Jun 1, 2017 10:03:08 GMT -5 5thofjuly said:

The big key seems to be the rights you sign away in the fine print with the direct to consumer companies.  These articles are several years old, but definitely pertinent. 

www.scientificamerican.com/article/23andme-is-terrifying-but-not-for-the-reasons-the-fda-thinks/

www.ncbi.nlm.nih.gov/pmc/articles/PMC2920210/

And, while I've not seen where this currently stands, at least a couple of months ago Congress was considering using a GINA loophole to let your employer require you to take a DNA test or pay a large penalty. The thing about 

www.forbes.com/sites/janetwburns/2017/03/14/gop-bill-could-force-employees-to-undergo-dna-testing-or-pay-thousands/#46ac671471fe

This is all very frightening to me, and, as far as I know, I don't have any genetic health conditions.

I read the Scientific American one and I thought it was a little too reactionary. It is against their policy to share genetic data but WHAT IF they did?! Etc. 

There are tons of deidentified genetic databases that exist currently (I used www.ncbi.nlm.nih.gov/geo/ for my master's degree work). Honestly my point in saying this is that 23andme and ancestry aren't the only ways companies or organizations have your genetic data. This is the first time it's available to consumers just for funsies, but there are plenty of ways that your genetic data could have been analyzed and stored before. I mean, if you've signed up to be a bone marrow donor, they have it. 

This paragraph, for example, is completely true.

"Even though 23andMe currently asks permission to use your genetic information for scientific research, the company has explicitly stated that its database-sifting scientific work “does not constitute research on human subjects,” meaning that it is not subject to the rules and regulations that are supposed to protect experimental subjects’ privacy and welfare."

That is exactly what the datasets and analyses from the GEO are - data sifting and data mining. A research project done with this data would not require IRB oversight, for example, because nothing is there to link the data to a person. Gathering the data obviously requires oversight, but once it can't be linked to a patient, it's just numbers and genes that really mean nothing. I could download a set right now, run some analysis through a program, then publish a paper on the correlation between gene B and disease X. 

As for data breaches, people breaking the law, etc. Well that can happen at a hospital or university, too. I was a victim of identity theft because my university had a breach and all employee information was stolen. Somehow student records in the chemistry department were not destroyed properly and our SS numbers were on them. At my hospital, we have a million rules and regulations to prevent patient data from leaving our site/servers. But it just takes one moron who transfers stuff to an excel sheet and opens it on their personal laptop which then gets stolen or lost to potentially create a data breach. 

Where I fall on this is that I understand if people have a medical reason to do genetic testing, and, if someone else wants to do this "just for fun" have at it. But, I'm concerned enough about how the data could be used that I'll be avoiding them (and encourage my first degree relatives to as well.)

[pantsparty]

I don't really consider myself tin-hat-foilly at all, but I definitely feel uneasy handing over my DNA for a non-medical reason. However, I understand that's pretty easy for me to say as someone who knows her lineage, for the most part. I guess I'm not really interested in the hassle just to find out I'm .00003% Scandinavian or something.

[pixy0stix]

A company can change their policies at any time. Given the current political climate where there are not checks on companies, I wouldn't be surprised at all if one of these companies turns around starts selling the data.

There is still a big gap in people who have to have their dna analyzed, and those that are spitting into a tube for funzies.

Also, this isn't related at all to the previous discussion, but I have a large problem with companies like Ancestry, whose sole purpose is to catalog people so they can pray them into heaven.

[BeagleMama]

My mom, her sister and my cousins did this last year.

They were connected to a random woman in the city where they both grew up. Turns out my uncle (their brother, now deceased) had fathered a child given up for adoption in the mid-60s. We're meeting her next month!

[sookie]

Jun 1, 2017 9:07:08 GMT -5 yaga said:

I had genetic testing done for IF reasons. Since I am a carrier for two diseases, H also needed to get tested. So at this point, I want to do it so that I can find out more about my heritage. We know nothing about my dad's side of the family. My last name is Greek. We are not Greek - as far as we know.

For those of you that are concerned for tin-foil hat reasons - would you ever allow your DNA to be sequenced for medical reasons? It's often done for diagnostic purposes - what type of mutations you have in a tumor to determine what treatment you would likely respond to or for research purposes - to learn more about cancer/biology in general. Different types of methods are used and some look at just a few specific genes. In fact, some cancers do have a genotyping aspect to diagnosis.

I'm not opposed to it for tin-foil hat reasons, but doing something for fun versus doing something for a medical reason are completely different.

[bugandbibs]

Is there a way to do this more anonymously? Like could I provide a fake name and send it to a PO Box? I haven't looked at the kits, so I am not sure what information you need to provide.

[Que?]

Jun 1, 2017 9:18:00 GMT -5 sb said:

May 31, 2017 22:32:08 GMT -5 verycontrary247 said:

Real talk. I'll see if I can find a pip.

This is probably not that uncommon because doctors used to think that separate placentas meant twins were definitely fraternal.  But they know now that if the egg splits early enough identical twins can develop their own placentas.

Ok this is fascinating. I've never put much thought into it and now I'm contemplating how many people have it wrong.

I have a friend with an H who is an 'identical twin'. They look NOTHING alike, like they're not even related even. My friend and her H have a set of twins together, who they say are fraternal because there were two placentas. They are absolutely identical in EVERY way.
I was honestly clueless until this thread. I wonder if they are too lol.

[sapphireblue]

I am adopted and had this done with Ancestry. You can use any user name you want on Ancestry so no one there, even if you got matched, would know your name unless you wanted to tell them.

It was fun to find out what my ethnicity was (although there were no big surprises, I look pretty Irish and that is what I mostly am). I did it years ago, and about six months ago my bio uncle took the test and it matched us. He is my bio mother's brother. But we must both be on the same page that we aren't interested in contact since neither one of us has messaged the other! But the system correctly identifies him as a close relative, most likely an uncle.

[L]

My adopted brother found his bio family through ancestry DNA--it's accurate. He was adopted through catholic social services in 1980. He never expressed an interest in his bio family but he did meet his bio Mom, grandma. He doesn't have a relationship with them as far as I know but he got some answers & he has a half brother that looks so much like him it's freaky (but I don't think they've met either). He found out a bit about his bio dad too but he'd already passed away sadly.

[tiki]

Jun 1, 2017 13:18:31 GMT -5 bugandbibs said:

Is there a way to do this more anonymously? Like could I provide a fake name and send it to a PO Box? I haven't looked at the kits, so I am not sure what information you need to provide.

When we did 23andme, there was no reason you had to provide your real name at all. I've also bought a ton of kits as gifts, so the billing address for the order means nothing either. 

[kirra]

Jun 1, 2017 9:07:08 GMT -5 yaga said:

I had genetic testing done for IF reasons. Since I am a carrier for two diseases, H also needed to get tested. So at this point, I want to do it so that I can find out more about my heritage. We know nothing about my dad's side of the family. My last name is Greek. We are not Greek - as far as we know.

For those of you that are concerned for tin-foil hat reasons - would you ever allow your DNA to be sequenced for medical reasons? It's often done for diagnostic purposes - what type of mutations you have in a tumor to determine what treatment you would likely respond to or for research purposes - to learn more about cancer/biology in general. Different types of methods are used and some look at just a few specific genes. In fact, some cancers do have a genotyping aspect to diagnosis.

Mine was sequenced for medical research.

That's actually why I'm not convinced these companies are a good thing for individuals. I had a counselor sit with me and explain a whole stack of paperwork that included that due to the nature of the study paternity would be tested, do I want to know if they find a whole list of known genes, and do I want to be notified in the future if a gene they haven't identified now is identified later (something like the BRAC gene). She had examples for why some people want to know and some don't.

I've seen several really good geneticists, and there's so much that they still don't know.

I do think that these companies could potentially be very beneficial for people as a whole if data mining is done, depending on who gets the data. I'm just not convinced it's good for individuals.

[fryjack2]

Jun 1, 2017 7:07:25 GMT -5 connie0000 said:

Jun 1, 2017 6:32:33 GMT -5 TR said:

I just took it to be, why would anyone lie about that? Unless the parents didn't even know they were identical for some reason?

Not knowing if your twins are identical or not is actually very common and normal. Unless they are boy/girl of course. Every twin mom I know did not know for sure if they were identical or not until they had them tested.

This is me.  Every year, I say I'm going to get them tested, and haven't yet.  My boys are 5.  I have yet to encounter anyone who doesn't think they are identical.  They were in 2 sacs, with 2 placentas. But something crazy like 30% of fraternal twins re actually identical. 

Certain things that make me think they may be (other than their looks) including their mannerisms, they got teeth within days of each other, their bodies seem to be in sync, they had their own language and could communicate with each other. 

[fryjack2]

Jun 1, 2017 8:15:37 GMT -5 konapoppy said:

Jun 1, 2017 8:12:10 GMT -5 @heyitsme said:

Yeah that read confusing. Because we look nothing a like we used to say we aren't even sisters much less twins (joking of course). We did a twin study and they confirmed we are in fact sisters/twins.

Were they thinking one of you was switched at birth? Or was this just a baseline test for the study? I am trying to figure out how two babies born from the same mom at the same time wouldn't be twins lol.

Theoretically I used you could have been half sisters, but I think that is pretty rare.

I know two sets of twins that are actually half siblings.  

2 dads, one surrogate/egg donor.  Each father's sperm fertilized one egg.  So not technically genetic twins.

[konapoppy]

Jun 1, 2017 20:43:19 GMT -5 fryjack2 said:

Jun 1, 2017 8:15:37 GMT -5 konapoppy said:

Were they thinking one of you was switched at birth? Or was this just a baseline test for the study? I am trying to figure out how two babies born from the same mom at the same time wouldn't be twins lol.

Theoretically I guess you could have been half sisters, but I think that is pretty rare.

I know two sets of twins that are actually half siblings.  

2 dads, one surrogate/egg donor.  Each father's sperm fertilized one egg.  So not technically genetic twins.

Yep, I was thinking of that scenario, or just one mom ovulating from both sides but fertilizing at different times from different men (which I think has happened). I would think it is still rare, but maybe not?

[Deleted]

Can they clone me? Because that would be a great public service for the world. You're welcome.

[fryjack2]

Jun 1, 2017 20:49:02 GMT -5 HRH Queen Dick I said:

Can they clone me? Because that would be a great public service for the world. You're welcome.

Can you clone dead people? 

I didn't realize science had come that far.

[shananagins]

Jun 1, 2017 20:43:19 GMT -5 fryjack2 said:

Jun 1, 2017 8:15:37 GMT -5 konapoppy said:

Were they thinking one of you was switched at birth? Or was this just a baseline test for the study? I am trying to figure out how two babies born from the same mom at the same time wouldn't be twins lol.

Theoretically I used you could have been half sisters, but I think that is pretty rare.

I know two sets of twins that are actually half siblings.  

2 dads, one surrogate/egg donor.  Each father's sperm fertilized one egg.  So not technically genetic twins.

This is fascinating! 

I can't believe you haven't had your twins tested! What do you say when people ask if they're id? I swear that was the main reason we did the test so early. Ours were in separate sacs, but had the same blood type so we didn't know if they were id or frat. I thought they were id because they looked so much alike, but all babies look alike, so I wasn't sure. I hated having to go through that whole explanation every time someone asked so we did the test when they were around 6 months old. Now it's totally obvious that they're id. H and I even get them mixed up sometimes. 

[fryjack2]

Jun 1, 2017 21:18:23 GMT -5 shananagins said:

Jun 1, 2017 20:43:19 GMT -5 fryjack2 said:

I know two sets of twins that are actually half siblings.  

2 dads, one surrogate/egg donor.  Each father's sperm fertilized one egg.  So not technically genetic twins.

This is fascinating! 

I can't believe you haven't had your twins tested! What do you say when people ask if they're id? I swear that was the main reason we did the test so early. Ours were in separate sacs, but had the same blood type so we didn't know if they were id or frat. I thought they were id because they looked so much alike, but all babies look alike, so I wasn't sure. I hated having to go through that whole explanation every time someone asked so we did the test when they were around 6 months old. Now it's totally obvious that they're id. H and I even get them mixed up sometimes. 

Depends on who's asking Random stranger who insists they must be?  I just say yes so they leave me alone.  Other people?  I say they may be, but we don't know for sure because we haven't had them tested. 

One of my colleagues has 3 year old twin girls.  She thought they were fraternal because they were di-di and have different hair color and look similar, but different.  She had them tested last year and they are identical.  I keep meaning to ask her for the company that tested them so I could do the same. 

I think one reason I have been dragging my feet is because I want them to be treated as different people.  So many people already treat them as if they are one kid, or make comments about not being able to tell them apart so they don't try.  I fear that if they are identical, people will make even less of an effort. They have slight differences like the Olsen twins. I can tell them apart all the time, and 99% of the time in old pictures.  H has a hard time with old pictures.  My ILs still have a hard time telling them apart IRL and have no idea in pictures. 

[shananagins]

Jun 1, 2017 21:32:52 GMT -5 fryjack2 said:

Jun 1, 2017 21:18:23 GMT -5 shananagins said:

This is fascinating! 

I can't believe you haven't had your twins tested! What do you say when people ask if they're id? I swear that was the main reason we did the test so early. Ours were in separate sacs, but had the same blood type so we didn't know if they were id or frat. I thought they were id because they looked so much alike, but all babies look alike, so I wasn't sure. I hated having to go through that whole explanation every time someone asked so we did the test when they were around 6 months old. Now it's totally obvious that they're id. H and I even get them mixed up sometimes. 

Depends on who's asking Random stranger who insists they must be?  I just say yes so they leave me alone.  Other people?  I say they may be, but we don't know for sure because we haven't had them tested. 

One of my colleagues has 3 year old twin girls.  She thought they were fraternal because they were di-di and have different hair color and look similar, but different.  She had them tested last year and they are identical.  I keep meaning to ask her for the company that tested them so I could do the same. 

I think one reason I have been dragging my feet is because I want them to be treated as different people.  So many people already treat them as if they are one kid, or make comments about not being able to tell them apart so they don't try.  I fear that if they are identical, people will make even less of an effort. They have slight differences like the Olsen twins. I can tell them apart all the time, and 99% of the time in old pictures.  H has a hard time with old pictures.  My ILs still have a hard time telling them apart IRL and have no idea in pictures. 

I have the same worries about people treating them as a unit instead of one kid. We've color coded them since they were infants so that family, pre school teachers, dance teachers etc could easily tell them apart. It has helped in that people don't get them mixed up, but the girls know they wear their colored bows so their teachers know who they are and I worry that will bother them. 
Are your boys starting Kindergarten next year? Are you going to ask for them to be in different classes? I can't make up my mind. 

[fryjack2]

shananagins-- They started pre-k at a new private school this year and were separated for the first time. They had previously been in the same preschool class for 2 years. I was really torn about it- see my post on the multiples board Ultimately, we trusted their preschool teacher who suggested that it may be a good thing to separate since Henry spoke for Jack a lot and Jack was contend never saying a word the whole day.

They are next door to each other, share recess and after school, plus the classes do a lot of activities together so they see each other a lot in the 4 hour school day.

I used to hear a lot of, "next year when I'm in your class..." But not in the last few months. I think Jack likes being in his own setting ( its been really good for him) while Henry would probably choose to be with his brother.

[andwhat]

Jun 1, 2017 10:08:44 GMT -5 mofongo said:

Jun 1, 2017 9:21:27 GMT -5 pixy0stix said:

You give those companies the rights to your DNA. There's concern that those companies will then turn around and sell what they've gathered, such as to insurance companies who will test your DNA for genetic conditions. Basically, once you send it off, it's out of your hands.

Thanks!

But also once you know the information you have to disclose. So if you find out doing the DNA test that you have some genetic condition, you have to disclose that in the paperwork. Can't disclose what you don't know.