Using LiveWello for 23andMe Raw Data

NancyD · August 24, 2013

Does anyone have firsthand experience using the LiveWello app for 23andMe Raw Data? Would live to hear from anyone who has used this. Thanks!

LNN · August 24, 2013

I do not. I think Sterling Hill & co. knows this stuff better than most, but my concern is privacy. As I understand it, Livewello is intended to be a repository of online medical info on you - a partal where your docs can log in and see all your stuff. Although she's tried to explain the security steps they've taken via email, their non-Livewello site was recently hacked. I think the analysis and the genes they've chosen to analyze are probably very valuable. I just wish I saw more ink given to the security measures they take. I have similar concerns about 23andMe, even tho I've opted out of all sharing, and will eventually tell them to delete my info when I'm done using their search engine. But I have a (probably false) sense of security that 23andMe has a better security infrastructure. I can't stop thinking of Livewello as a server sitting in Sterling's living room and while that certainly doesn't mean that server isn't secure, Sterling has often commented on her limited resources to treat her own health, I don't have a sense that money's been no object in terms of fire walls, technology, etc. Just my uninformed opinion but figured I'd toss out concerns for you to investigate before you sign up.

Ben Lynch also offers his own analysis, with lots more snps than genetic genie. But when I looked at the snps he focuses on, I grew frustrated. Ok, I have abc snp and it raises my risk for death by spontaneous combustion. But if I can't find any info on what to do about that, then I'm not sure it's worth knowing (at this moment in time). Since methylation seems to be the only area where gurus have offered "how to" info, that's what I've limited myself to for now.

If you do sign up, let me know what you think. Maybe my concerns aren't valid.

NancyD · August 24, 2013

Thank you, Laura, for your perspective on LiveWello. Any reason why one could not use a pseudonym to protect one's privacy?

Mayzoo · August 24, 2013

Any time you log onto a site, your IP address is recorded. You can use a psuedonym, for surface security, but the IP of the computer you accessing from will still be recorded. If you use a library computer or public wi-fi site, then *your* home IP addy will not be recorded, but those options come with public security risks as well. We did all the surface security stuff when we ordered the 23andme. But I use my home computer to access the results, which gives out my IP addy. You cannot avoid all risks, you simply have to decide which risks you deem necessary.

Edited August 25, 2013 by Mayzoo

LNN · August 24, 2013

It wasn't even my IP address that I was concerned about as much as letting yet another server house my dna data. It's like my desire to guard my SSN. Some companies have it - no getting around it when my mortgage co. insists on it. Yet I try not to give it out to too many places. Likewise, I felt I had to give my dna data to 23andMe to get what I wanted. And I gave it to genetic genie because I was too new to the process to know how to get it myself. GG promises to delete my data and Ip address immediately after running the report, but I can only take them at their word.

Livewello wants to store the data just like 23andMe does. I just start to feel uncomfortable the more widely my data is shared. Especially since Livewello is a new company with limited resources for data security (not that even big co's can't be hacked). I felt the rsik I took with 23andMe was worth what I got in return. I don't feel the same way about Livewello. But that's just me. Some people on other support sites feel it was really helpful. I think it depends on how much you're willing/able to do yourself vs. your risk tolerance.

NancyD · August 26, 2013

Thank you, Laura and Mayzoo, for your thoughts re security of LiveWello. I will weigh the pros and cons and make my decision. I suppose if we all valued privacy over the health of our kids none of us would be posting such intimate details on public forums. We do what we have to do to get our kids healthy.

Culdesacdad · June 14, 2014

I was able to find this info on Livewello's security and Privacy:

https://docs.google.com/document/d/1YEqOLCi8gsUIpeTM6mKaOqS5vJuGNTr3PF1eCw2wFIY/edit?usp=sharing

It also looks like the App is able to link specific links to health conditions and symptoms which will be helpful to me: http://bit.ly/1jnlf4X

If anyone has more info pls share, I'm waiting for my daughters results to come in and I'll share how everything goes since I see they have a link to specific genes linked to PANDAS.

NancyD · June 14, 2014

They all have their advantages and disadvantages. I ended up doing a few reports to compare. LiveWello did not report on VDR taq (or VDR Bsn), which is important and I didn't find out my DD was VDR taq ++ until I recently ordered Genetic Genie. That gene alone explains a lot of my DD's problems. Especially when combined with a few other mutations. Genetic Genie reported on the fewest genes. LiveWello and Sterling's report were very similar but laid out a little differently. They both report on 5 different CBS genes, yet the literature only discusses the importance of two. Naturally my DD only had the CBS A13637G ++, which the literature never discusses. With Genetic Genie she does not even come up CBS ++ as they only report on 3 CBS genes. So what does that mean -- the others don't have as much importance? I don't know. Another report I found helpful as an add-on was Nutrahacker as they specifically tell you what supplements to avoid and which to consider using based on your specific mutations. So in the end, I'm glad I had Sterling's (I like the explanation he offers), but I am also glad I had Genetic Genie (it was worth $10 to find out DD was VDR taq ++), and I really like Nutrahacker as an add-on (not by itself).

I was able to find this info on Livewello's security and Privacy:

https://docs.google.com/document/d/1YEqOLCi8gsUIpeTM6mKaOqS5vJuGNTr3PF1eCw2wFIY/edit?usp=sharing

It also looks like the App is able to link specific links to health conditions and symptoms which will be helpful to me: http://bit.ly/1jnlf4X

If anyone has more info pls share, I'm waiting for my daughters results to come in and I'll share how everything goes since I see they have a link to specific genes linked to PANDAS.

Edited June 14, 2014 by NancyD

NancyD · June 17, 2014

Hmmm...here are some blatant discrepancies I found:

Sterling's, Genetic Genie, and Nutrahacker reports say MAO A R297R (rs6323) is ++

LiveWello says it is --

Sterling's report says CYP1B1 L432V is ++

LiveWello says --