S/O: thoughts about DNA test kits (genealogy etc)

[NCGrandma]

The thread about possible Ashkenazi Jewish ancestry reminded me that I have been interested in those DNA tests that claim to report ethnicity. HOWEVER, I have concerns about how the data collected for such tests are used.

Any experiences? solid information about data privacy, data sales etc? Any recommendations for specific resources?


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[gamma]

I love doing research for our family’s genealogy, but I also have concerns. Lately, my thoughts have been, since I’m older maybe it shouldn’t be a concern any longer?

[scrooks]

I would love to do it but I have the exact same privacy concerns : (

[nfceagles]

I have the same interest and concerns. My mom and I are both reluctant to do it , but I just ordered one for my 94 year old grandmother and my mom is going to help her process it. We figured she doesn’t have anything to lose. That will give me a clue on 1/4 of my history.


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[mmsmom]

My super concerned about privacy husband did a lot of research about privacy and felt ok about doing the test. However, the laws and regulations could change so it is hard to know how your information will be protected for eternity.

I would also caution to make sure you are prepared for what the results could reveal. My friend just found out about a half sister no one knew about. Her father didn’t know a one night stand led to a pregnancy over 50 years ago. They are all ok with it and enjoying getting to know her but it doesn’t always turn out well.

[squimp]

I find this an interesting topic. I think you become more interested in family history as you get older. But what I'm thinking is that just because people are older you aren't escaping the privacy issues - it might mean their descendants could be identified.

There have been some cases where alleged criminals have been identified through their genetic relations, which is both fascinating and scary. Don't really know how that works although I would like to understand this better. I love crime shows and I wonder if some of the new ones tackle this kid of evidence.

[AnnieW625]

I need to do the expanded one due to me losing baby 2 to trisomy 18 so I can find out if it was truly a random occurrence (I tend to think it was due to some liquid vitamins I had been taking that had really high levels of vitamin A in them) or if it was truly a genetic disorder passed on to me genetically. I will probably do it if and when it goes on sale during Black Friday.


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[essnce629]

The 4 of us did 23andme 4 years ago after my miscarriage and when DS1 was going through all his medical mysteries. Since then my mom, dad, and half sister have done it too. I plan on getting my grandma a kit for her 94th birthday in 2 weeks as she just expressed interest. We loved it and would do it again. I did it for the health reports. We found out that DH is 50% Ashkenazi jew (he had no idea and his mom was like oh yeah both my parents are!) and that DS1 is a hemophilia C carrier (common in Ashkenazi jews), which explains why he bleeds so much and gets nosebleeds all the time. We also found out that we all have the homozygous MTHFR mutation which may have explained my miscarriage, my abnormally high B vitamin blood levels (my body can't process synthetic B vitamins), etc.

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[JustMe]

It has been reported that 23andme will be $59 at Target on Black Friday

https://clarkdeals.com/black-friday/target-black-friday-ad/?utm_source=Clark+Newsletter+List&utm_campaign=5b320d66d9-Clark_Deals_Newsletter&utm_medium=email&utm_term=0_afa92deb83-5b320d66d9-71217273

[niccig]

I’d love to but it may answer questions about my grandfather’s parentage that my mother would find difficult to process. And I wouldn’t be able to keep the details from the family.


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[StantonHyde]

See I already found out all the details about secret family history stuff just through research. My grandmother loved getting dirt on my grandfather's family:ROTFLMAO:I would just find it interesting to see where my family may have come from, etc. I fully expect to find all sorts of odd things--because isn't that the way it works? But with my luck, it will be that we are the boring English/German people I think we are :loveeyes:

I had amnios with both kids so we have their full DNA testing and my husband and I both had DNA testing because DS has a Robertsonian translocation. We weren't looking for other health issues. I don't know if someone could look at our DNA from that test to see if have other health issues or if we would have to run a DNA test to see if we have a zillion different health issues?????

The thing to remember with testing is--you can have false positives and negatives. What do you want to do with the results? That's what should drive the decision.

[american_mama]

DH and I are quite interested, but have concerns. Generally, I worry that my genetic data could be used against me big Big Bad Company or Big Bad Govt in some unknown way in the future. As two other people touched on, I also am concerned about the possibility of familial surprises that are not what I want to uncover and the possibility that my genetic data could be used to track criminals in some way. I am not interested in the health implications of the testing and know the least about that.

The most common genetic surprise is probably unknown half siblings due to affairs (or at other point in your family tree... maybe your cousin isn't your genetic cousin or you have an unknown half cousin.) You could learn about long ago adoptions that were kept secret or that you were conceived from donor sperm and your parent didn't tell you. In cases like this, with my immediate family, I'd rather let sleeping dogs lie than re-visit my entire family structure and relationships. https://www.bestonlinereviews.com/dna-testing/5-common-dna-testing-surprises/

One woman discovered an amazing family surprise... her Irish father had been accidentally switched at birth in a crowded 1930's New York hospital. Tracking down who he was switched with took years, but eventually, they discovered the Jewish family that was her genetic family. So that on-a-lark DNA test upended every generation of TWO families. https://www.washingtonpost.com/graphics/2017/lifestyle/she-thought-she-was-irish-until-a-dna-test-opened-a-100-year-old-mystery/?utm_term=.c68cbaa3d25f

Now, in something rare and dramatic like that, I WOULD want to know. There have been two or three cases of fertility doctors who turned out to be using their own sperm with their patients, rather than anonymous donor, and at least one of those was discovered through half siblings on a DNA testing website. Look at much this girl looks like the fertility doctor https://www.bbc.com/news/world-us-canada-43673850

But I suspect finding a half sibling due to an affair or brief relationship is a lot more common than those really dramatic and different stories that maybe need exposing.

I don't fully get what this means, but one of the articles I just read about the above said Making matters more complex is that a donor who wants to stay anonymous might decline to send in their DNA, but can still be traced through their family members. https://www.fastcompany.com/40564861/police-are-using-genetic-testing-companies-to-track-down-criminals

And yes, I have read an article about using public genetic websites to narrow the field of suspects for crimes. I don't quite get it, but I bet it will be growing.

I know my cousin did it for her whole family, and the three siblings (my cousins) did not have the same results. None of it was hugely different, but it is weird to think that one sibling just didn't get a chunk of DNA that is that - cancer or Italian or tall - and another sibling did. These articles help explain that
https://www.npr.org/sections/health-shots/2018/01/22/578293890/my-grandmother-was-italian-why-arent-my-genes-italian
https://gizmodo.com/how-dna-testing-botched-my-familys-heritage-and-probab-1820932637

[Globetrotter]

I once pursued testing to see if I had an inherited tendency for something that runs in the family, and it created so much stress for me that I ended up developing health anxiety! It ended up with endless testing that led to visits to various specialists And a false cancer scare! There is no way I’m going to voluntarily put myself through this “for fun.” My biggest concern, aside from stress, is getting health information without knowing how to process it with the help of a professional genetic counselor.

I’ve never looked into it, but I highly doubt anyone in my family has had this done so I’m not sure how this would work.

[klwa]

FIL refuses to even think about those tests because his brother was a bit of a "tomcat" and he's afraid to find out about any nieces/nephews (and honestly, brothers and sisters since his dad was similar) he has out there.

I have a friend who did it trying to find out about her birth family since she was adopted as an infant. She's been in contact with some close cousins.

Honestly, I can't bring myself to do one because I worry what might come out. I think they seem really interesting, but I just can't do it. I'm more tempted to get one for DH because his maternal grandfather was adopted and very little family history exists due to that. But due to FIL's concerns, I can't bring myself to do that to FIL.

I know PP mentioned that since she's getting older, maybe there's not as much concern, but I'm also concerned with what might be out there for my kids/other family members.

[khm]

Just in my real life circle I have SO many stories..... Surprise half sibs, etc. Adoptees reconnecting in a flash. It is kinda shocking how many *surprises* I know about in my small group of friends. One guy found an uncle connection, he contacted said uncle who said "no, must be a mistake". Then a bit of math and, "Oh...... one of my sisters didn't come home that one Christmas..... that was always weird....."

It's both amazing and scary to me. We haven't done it, my husband is super interested but I haven't pulled the trigger. He got way into ancestry.com a few years ago, before the DNA involvement, it was just family tree info. He excitedly told my mom about connecting with her paternal aunts and was SO bummed to be told she didn't have any paternal aunts and that "branch" was all an error. He kinda gave the whole thing up right then!

The wapo article american_mama posted was truly one of the most gripping things I've ever read.

[JBaxter]

We have.... We found the arrest records for a great+++ grandmother. She was arrested for mooning the British Navy, measuring her "patrons" against her broom handle and causing public fights ( with her husband in their tavern). My grandmother's brother is only a half brother ( that was a big OMG) Same grandmothers father was NOT killed in a mining accident but actually had 3 other full families in neighboring states. And come from the Mayflower crew on my maternal side and a Turkish Muslim Pirate on my paternal grandfathers side :D.
I want to do DH's family his great grandfather came from Armenia to avoid the genocide They have the journal he wrote as a young man and recently had it translated.

[truly scrumptious]

I echo everyone's privacy concerns. I'm not as concerned about unknown half-siblings (although that would throw us all for a loop!) Rather I have two types of concerns:

- Once you know that info you can't "un-know" it. I'm on the fence about whether it is better to know that someone has a 60% chance of developing XYZ cancer due to genetic predisposition - I think it would cause health anxiety like for a PP, rather than be helpful. Some could make the argument that you could try to make lifestyle choices (diet, etc.) to try to stave off the illness, but making these choices out of fear seems stressful to me. I'd rather make healthy lifestyle choices based on the assumption that things will be okay. But that is a matter of opinion, and some people might prefer to know that their life expectancy, for example, so they can make decisions accordingly.

- The information could potentially become part of your medical record, meaning that it can affect your ability to get insurance, etc. later on. Even if it isn't shared with a potential insurer, most life insurance requires you to disclose all known health facts - so they'll still insure you and take your premium, but when it comes time to pay out if they find out you knew something and hid it, it could create huge headaches. It is just too unregulated an area to be worth the risk IMO.
https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html

[magnoliaparadise]

DH and I are quite interested, but have concerns. Generally, I worry that my genetic data could be used against me big Big Bad Company or Big Bad Govt in some unknown way in the future. As two other people touched on, I also am concerned about the possibility of familial surprises that are not what I want to uncover and the possibility that my genetic data could be used to track criminals in some way. I am not interested in the health implications of the testing and know the least about that.

The most common genetic surprise is probably unknown half siblings due to affairs (or at other point in your family tree... maybe your cousin isn't your genetic cousin or you have an unknown half cousin.) You could learn about long ago adoptions that were kept secret or that you were conceived from donor sperm and your parent didn't tell you. In cases like this, with my immediate family, I'd rather let sleeping dogs lie than re-visit my entire family structure and relationships. https://www.bestonlinereviews.com/dna-testing/5-common-dna-testing-surprises/

One woman discovered an amazing family surprise... her father had been accidentally switched at birth in a crowded 1930's hospital. Tracking down who he was switched with took years, but eventually, they discovered the Jewish family that was her genetic family. So that on-a-lark DNA test upended every generation of TWO families. https://www.washingtonpost.com/graphics/2017/lifestyle/she-thought-she-was-irish-until-a-dna-test-opened-a-100-year-old-mystery/?utm_term=.c68cbaa3d25f

Now, in something rare and dramatic like that, I WOULD want to know. There have been two or three cases of fertility doctors who turned out to be using their own sperm with their patients, rather than anonymous donor, and at least one of those was discovered through half siblings on a DNA testing website. Look at much this girl looks like the fertility doctor https://www.bbc.com/news/world-us-canada-43673850

But I suspect finding a half sibling due to an affair or brief relationship is a lot more common than those really dramatic and different stories that maybe need exposing.

I don't fully get what this means, but one of the articles I just read about the above said Making matters more complex is that a donor who wants to stay anonymous might decline to send in their DNA, but can still be traced through their family members. https://www.fastcompany.com/40564861/police-are-using-genetic-testing-companies-to-track-down-criminals

And yes, I have read an article about using public genetic websites to narrow the field of suspects for crimes. I don't quite get it, but I bet it will be growing.

I know my cousin did it for her whole family, and the three siblings (my cousins) did not have the same results. None of it was hugely different, but it is weird to think that one sibling just didn't get a chunk of DNA that is that - cancer or Italian or tall - and another sibling did. These articles help explain that
https://www.npr.org/sections/health-shots/2018/01/22/578293890/my-grandmother-was-italian-why-arent-my-genes-italian
https://gizmodo.com/how-dna-testing-botched-my-familys-heritage-and-probab-1820932637

Wow, thanks for this! I am looking forward to reading these articles!!

All, do you know how much/or which agencies give health information? That's what I would be most interested in. (If this would hijack the conversation, tell me and I'm ok starting a new post!)

[AngB]

I echo everyone's privacy concerns. I'm not as concerned about unknown half-siblings (although that would throw us all for a loop!) Rather I have two types of concerns:

- Once you know that info you can't "un-know" it. I'm on the fence about whether it is better to know that someone has a 60% chance of developing XYZ cancer due to genetic predisposition - I think it would cause health anxiety like for a PP, rather than be helpful. Some could make the argument that you could try to make lifestyle choices (diet, etc.) to try to stave off the illness, but making these choices out of fear seems stressful to me. I'd rather make healthy lifestyle choices based on the assumption that things will be okay. But that is a matter of opinion, and some people might prefer to know that their life expectancy, for example, so they can make decisions accordingly.

- The information could potentially become part of your medical record, meaning that it can affect your ability to get insurance, etc. later on. Even if it isn't shared with a potential insurer, most life insurance requires you to disclose all known health facts - so they'll still insure you and take your premium, but when it comes time to pay out if they find out you knew something and hid it, it could create huge headaches. It is just too unregulated an area to be worth the risk IMO.
https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html

I agree with these concerns and also I really just don't care enough to explore it at this point.

That said, I can't understand those that express concern that their DNA can possibly be used to solve past crimes. Personally if a relative committed a crime serious enough that mystery DNA was obtained and kept (meaning rape and/or murder are the only crimes I can think of that they would keep DNA), I would be all for my DNA being used to solve those cases and at least give the victim and/or family a little peace/closure; relative or not.

[NCGrandma]

I echo everyone's privacy concerns. I'm not as concerned about unknown half-siblings (although that would throw us all for a loop!)
[...]
- The information could potentially become part of your medical record, meaning that it can affect your ability to get insurance, etc. later on. Even if it isn't shared with a potential insurer, most life insurance requires you to disclose all known health facts - so they'll still insure you and take your premium, but when it comes time to pay out if they find out you knew something and hid it, it could create huge headaches. It is just too unregulated an area to be worth the risk IMO.
https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html

I’m also not concerned about unknown half-siblings (although I guess one never knows...), but I do think the insurance etc implications are real. Some years ago, when BRCA testing was first available, one of my colleagues (female physician, Ashkenazi Jew, married to an Ashkenazi Jew) went to great lengths to get herself and her young daughter tested in a way that would not be easy to discover. I think she submitted her daughter's sample under an assumed name. She was concerned about a variety of unknown risks, since this testing was so new. I think there was also a bit of "let’s not give the anti-Semites any more ammunition"...


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[MSWR0319]

DH and I have been talking about doing this. I don't know why, but it never even crossed my mind that there could be unknown siblings show up. DH already has a half brother and sister from his dad who cheated on his mom. They eventually married, but who knows if he has any other kids we don't know about. Wouldn't surprise me one bit! I'd be interested to see it, but I think DH would probably be really upset. We probably shouldn't do it.

[Jeanne]

The information could potentially become part of your medical record, meaning that it can affect your ability to get insurance, etc. later on. Even if it isn't shared with a potential insurer, most life insurance requires you to disclose all known health facts - so they'll still insure you and take your premium, but when it comes time to pay out if they find out you knew something and hid it, it could create huge headaches. It is just too unregulated an area to be worth the risk IMO.
https://www.cnbc.com/2018/08/04/4--risks-consumer-face-with-dna-testing-and-buying-life-insurance.html

Yep no way for this reason alone. There is no regulation with this. There is also no discussion anywhere regarding big data and ethics. There must be rules and convictions regarding ethics and big data and those need to be in play for a decade to test it all out. We live in a country that is more pro business than pro human. Money talks. Until there is more balance and Citizens United is overturned as a first step, this is a no go for me.

[NCGrandma]

Thanks — I’m glad to know that others have concerns about privacy, data security, and other potential long-term risks of direct-to-consumer DNA testing. You’ve reinforced my feeling that I’ll continue to just say no...


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[StantonHyde]

Dumb question here--how can testing turn up half siblings? They match your DNA with other people's DNA in their data base? And then tell you this? That seems to be an invasion of privacy right there.

I am more interested in the "where did I come from" aspect of this--e.g. ethnic/country of origin, than health stuff. I think if I were adopted I would want to do the health testing just because I wouldn't know otherwise.

[basil]

I think it's a terrible idea and I have no interest in doing it. I realize I'm in the minority. I don't think that their health data is well researched. So no one really knows what to do with it, and it just provokes anxiety. I know I'd be terribly anxious if my test showed I was at high risk for cancer or dementia, so I don't even want to go there. I have a pretty well researched family tree back to the Puritans on one side and the Civil war on the other, so I don't think it could tell me anything I would want to know. And there is always the possibility of it telling you stuff you don't want to know.

Also, I think it's terribly unfair to people like sperm donors or biological parents who put their kids up for adoption and never wanted to be found. They could be identified if their relatives did these tests, even if they didn't.

[AngB]

I think it's a terrible idea and I have no interest in doing it. I realize I'm in the minority. I don't think that their health data is well researched. So no one really knows what to do with it, and it just provokes anxiety. I know I'd be terribly anxious if my test showed I was at high risk for cancer or dementia, so I don't even want to go there. I have a pretty well researched family tree back to the Puritans on one side and the Civil war on the other, so I don't think it could tell me anything I would want to know. And there is always the possibility of it telling you stuff you don't want to know.

Also, I think it's terribly unfair to people like sperm donors or biological parents who put their kids up for adoption and never wanted to be found. They could be identified if their relatives did these tests, even if they didn't.

I do wonder if it will ultimately have the effect of having less people willing to be sperm donors, etc. We did IVF for my current pregnancy and I know we absolutely would not have considered donating any leftover embryos as I just couldn't handle the idea of having a biological child "out there" that we had donated as an embryo. (Fortunately it was a moot point as we didn't have any extra embryos but still, I do think it's something more people are thinking about and may have repercussions.)

[HannaAddict]

Don’t do the health focused kit, stick with basic ancestry kit for the interesting part. Most people don’t need to know random genetic questions. When things are an issue, I would use medical professionals vs do it yourself health dna data. I would not be worried in the least about finding half siblings or relatives - unless it was by my spouse. I would be concerned about how an insurance company could get the data to use or using a health dna kit and finding something out that may be used to deny coverage. The dog dna panels are fun (wisdom panel) and our two shelter dogs have had them done. They are way more detailed than just a couple of years ago.


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[khm]

Dumb question here--how can testing turn up half siblings? They match your DNA with other people's DNA in their data base? And then tell you this? That seems to be an invasion of privacy right there.

I am more interested in the "where did I come from" aspect of this--e.g. ethnic/country of origin, than health stuff. I think if I were adopted I would want to do the health testing just because I wouldn't know otherwise.

The way I understand it, you can opt in to have your info available to others, or out. If you opt in, you see others who match with you and what type of match you are. You don't see names at that point, but you can message each other through their system and then exchange whatever information they decide, etc. The people I know who have done it have matched with birth father, birth mother, cousin, uncle, surprise half sibs.

I've read fascinating articles of switched at birth, icky fertility doc using his own sperm, etc. Lots of articles about how people do this for fun, but be prepared to know stuff you might not be expecting. Basically, there are many surprises out there!

[anonomom]

As an adoptee, I won't be doing any tests. I'm not all that interested in finding out my genetic ancestry. It just doesn't seem relevant enough to be worth the privacy risks, which I seem to share with a lot of folks here.

And at this point in my life, I don't really want to find any new family members. Maybe when I was younger and in the throes of of estrangement from my adopted family, the idea of a whole potential new family would have appealed. But right now, I think it's better just to let sleeping dogs lie.

[icunurse]

I’ve done just the dna (not genetic) and we found a first cousin, guess my bachelor Uncle had a moment. First cousin is curious because her birth mom placed her for adoption, so we have been trying to help out as much as we can (Uncle and rest of family is long gone).

Both of my children are adopted and want to do the dna test. We will not be doing the genetic testing, I feel that’s a decision that they can make on their own when they are older. We have open adoptions and original birth certificates, so we aren’t searching for anyone. It would just be nice to confirm their nationalities vs what we were told. They have seen my results and want to know what their background percentages are and if there is anything more to what we have been told.

[Simon]

We did the DNA, ancestry style test not medical, not genetic. I elected not to join the database so I have not found any relatives or heard anything from them. My results have been refined a few times as their data has been updated. I find it fascinating and love it. I am generally super paranoid about privacy, but was willing to take this risk and am very glad that I did!