At home genetic testing- any concerns?

[JustMe]

Dd and I did 23andme many years ago. As far as what you put online, you can use a fake name if you like. I am not up on if they do anything identifiable (other than give them to us), so if that's a concern you might want to look into that. As far as health issues, you have to check something (or something like that) if you want to see the more serious possibilities. Yes, there may always be skeletons in the closet...but I am one who prefers to know. As an ashkenazi Jew, a ton of relatives come up for me. Its a little confusing because there are even a crazy amount of people projected to be second cousins that I can't find commonalities with as far as last names, etc...but I really dont know anything about my family beyond my grandparents so there is a lot I dont know.

[lizzywednesday]

I wouldn't do it to get a "medical" profile, but I've toyed with getting an Ancestry.com test simply because Dad hasn't put me in touch with the person in our family who knows the family history best - she's his generation, so if I don't have contact info, I won't be able to keep up with things unless I subscribe to Ancestry.

For whatever reason, the 23andMe tests leave me unsettled, despite the passage of GINA in 2008 and their claims that the information is privatized in their database.

I don't, however, have a problem with consenting to participate in long-range medical studies (etc) and I made this decision after reading about how medical ethics has come a long way since Henrietta Lacks, but it does have quite a ways to go as tech changes!

[Snow mom]

My concern with all these tests is you aren’t just consenting for yourself but for all your close (and even not so close) blood relatives. Your DNA doesn’t just belong to you—it belongs to your parents, grandparents, siblings, kids, etc. If you have a rare mutation or something of importance I could tell you the probability that any of these people have that same mutation/gene. When you consent to put your DNA on one of these websites such as the crime tracing, you aren’t really consenting for yourself, you are consenting for your entire family tree.

I’m a biologist and I do not plan to ever do 23andMe or the like because I have a lot of concerns. I know my uncle did one so I’m kind of already out there. I spoke with my mom yesterday and she’s planning on doing the cancer markers, which I’ve also refused to this point. That to me is more worthwhile though because it’s done with the guidance of a genetic counselor and it’s looking for specific things which there are reasons to believe might be in our DNA. I’m still not sure that I want to know though.

[Kestrel]

We have a cousin through a closed adoption who did it as a young adult - I think that was very worthwhile for him. He has a wildly diverse background, and people were always asking what he "was", and he didn't know! (It turns out he has everything, basically - Europe, Asia, Africa, Hispanic of some kind, American Indian... all kinds of things!)

But for us - no. The privacy concerns are too overwhelming. Is was not too long ago that people couldn't get health care because of preexisting conditions. I think the time is coming when family history could be used the same way.

Basically, the tech is ahead of the laws at this point.

[pharmjenn]

It's funny, I read Henrietta Lacks and my thought was, "What's the issue?"

My issue with HELA is the lack of consent from the family, and the fact that the scientific profession didn't seem concerned about a need. The fact that it was monetized and the cell line sold for years does not bother me. I would not expect the Lacks family to be reimbursed. When my son was born, they took cord blood "for research" and I had to sign a consent form. The blood was not linked to him (it became anonymous donor as far as I know) so I was fine with that.

I did 23andMe two years ago, and didn't get any mindbreaking results. I was linked to my brother, and a couple cousins, plus tons of people who are supposedly related some how. My DH submitted his but it didn't have dna in the spit and he never resubmitted the replacement.
My DS was from an egg donor and eventually I would like to do his to find out more about his roots. He does not know this fact though (and he looks just like me) so until he expresses interest, or gets into the later teen years and we tell him, that won't be happening.

[zukeypur]

I did ancestry, DH did 23 and Me. I tried 23 and Me, but I am permabanned because I didn’t give a good sample twice. Super embarrassing because I have a masters in molecular pathology, lol. FYI, don’t eat or drink at least 30 minutes prior to submission, and scrape your tongue on your teeth to increase cellular content before spitting.

I have also had a cancer panel due to my own cancer history as well as family history. I have shared those results with my parents.

At this point, so many people have given samples that you could be “found” in a DNA database with a little digging. Your DNA is already out there, albeit in different combinations in your relatives. Ancestry has “connected” me with several relatives, but I haven’t reached out to them. Most use fake names.

As far as the traits on Ancestry, they are 50% at best. If you’re doing it for the traits, don’t rely on ancestry. I can’t comment on 23 and Me. Ancestry has told me that I likely don’t like cilantro (love it), don’t like Brussels sprouts (love them), can’t smell asparagus pee (absolutely can), probably am not a photic sneezer (one of my greatest talents), and probably have attached earlobes (definitely do not). I realize this isn’t an exact science, but I feel like their analysis should be better at this point. They also consistently reanalyze the ancestry portion of their data, so don’t may yourself to your results. I’ve gone from 17% to 33% to now 2% Irish. This last time it looks like they just swapped the Irish for Scottish, which more closely matches my genealogy, but I feel like they should have been better at this point. For me, it really doesn’t matter. I’m pasty white from somewhere in Europe, no surprise there. I have had no real surprised thus far, although I do realize that there is always that possibility. I can’t say I will be horribly surprised if an unknown sibling pops up some day.