23 and me - do ppl use their names?

[Hopeny]

I'm considering this test and the first question was who is this test for? Wondering what folks have shared in terms of personal data and information. Thanks

[Mayzoo]

I used a fake name for my child, I had a relative use their credit card to pay for it, and had it shipped to a friends address.

 

I have no idea what they will be doing with this information in the future. I know it is fairly "safe" now, but I have no idea what the laws will be during my child's entire life, so I wanted to be extra safe if possible.

[bigmighty]

I believe they only do heredity/ancestry testing at this time.

[LNN]

Bigmighty - they still do the full 990,000 snps and allow you to download all the raw data. The only thing that's changed is that they no longer provide health reports that have your risk of xyz condition (which wasn't that useful anyway).

 

Hope - I used initials but didn't do any sort of identity hiding other than that. I read about a scientist who have a dna sample to a group that was trying to determine how hard it would be to identify him based only on 2 or 3 pieces of information - I can't recall what info he gave them but it was vague - something like his age group, what region of the country and maybe one other thing. They traced the sample to him in a very short time. So using things like aliases isn't really going to prevent someone from finding out who you are if they really wanted to. But getting the methylation info was too important to me to worry about it too much. It helped my DD immensely so I wasn't going to waste tons of emotional energy worrying about something I couldn't control. It was either take the privacy risk or go without the info, which for me wasn't an option.

 

I think you can use different addresses and aliases to keep marketers at bay but not to protect your dna identity if someone were to really want to track you down.

[chubbermommy]

I noticed they don't provide the health analysis anymore - so how do you make sense of the raw data? (sorry for hijacking, just curious about that)

[airial95]

There are apps that help you interpret the raw data, I'm sure someone here can suggest one or more.

 

But on the other side of the coin, we have specifically NOT done this testing because of the privacy issues and fear of what they will do with the data, like LLM pointed out, even taking precautions it is still disturbingly easy to track people down, but that's not even our biggest concern. My issue is that the company is owned by Google - who is renowned for it's data mining/sharing practices. Just don't trust it personally. While I'm not a fan of the FDA, but I also share their concern with accuracy in reporting - considering I don't trust Google, I have a hard time trusting the end product. But that is our personal choice, and opinion. I know that the info has helped lots of others and the decision all depends on what specifically you are looking for.

 

We tested for MTHFR mutation through LabCorp - which insurance even covered, so we were able to get that information else where.

 

Again, this is NOT any sort of judgment on those who have or haven't done the testing, I have even recommended to others to do it when looking for answers to things that I know this test has helped others uncover. It's just our own personal choice that we have made as it regards this particular test.

[beeskneesmommy]

We tested MTHFR thru the pediatrician, who uses one of the typical labs like Labcorp or Quest. I am interested in the DNA testing for ancestry, but I am always suspicious of giving over that info. Anyone can potentially get it and keep it forever. BTW, I have been to several docs this year, of diff. disciplines and the privacy laws have been decreased, in my opinion. The orthopedic's office basically told me that if I was unwilling to sign a blanket release allowing them to share info with whomever they wanted, they couldn't treat me. This is an office that I have been to for years. The ethnicity and race questionaires are more stringent this year since ACA started - demographic gathering.

 

If you want privacy, you really have to fight for it! PS: I was just at a very well known PANDAS doc w/my son and they asked for his pediatrician's name and address. When I questioned them further, they said that they planned to fax DS's info to her...without my signing a release. I had to tell them no, then ask them to write on their paperwork that I do not give permission. This is a ped that we are ambivalent about, and I certainly do not want DS's info faxed to anyone without specific release and perrmission. Watch out if you feel as I do!