Alex K Chen Posted October 24, 2015 Report Share Posted October 24, 2015 I'm thinking of trying it, but am not sure if it's worth the cost ($2000, but may increase soon). It has HUGE potential in the future. It gives you a fitbit, whole genome sequencing, and blood tests of 93 metabolic biomarkers, shown at the bottom. In addition, it collects sample discovery-based assays of 6,000 other biomarkers (measured from metabolon) - it also banks people's blood so that more bioassays of the blood markers could be measured. These measurements are kept from the user unless the user specifically requests the data, however (and I'm not sure if others have made use of it). These measurements might include metrics like carbonylated proteins, many lipid metabolites (measuring one's lipidome), and advanced glycation endproducts. If it's just for the FitBit and the measurements below, I'm not sure if it's really worth it (I already have my genome sequenced by the personal genome project, though it's unclear whether or not the quality/coverage of PGP genome sequencing matches that of Arivale sequencing). If I can get clean access of the data of the 6,000 other biomarkers, though, I'd think it's more worth the cost. Anyways - just wondering - has anyone else here considered/tried Arivale? Ultimately, I'm interested in biomarkers that may be correlated with aging (these will include ones beyond just the standard ones). I already know how to keep glucose/insulin/triglycerides/etc under control. I also might have slight hopes that I might quantify my body as extensively as that of Larry Smarr or David Ewing Duncan. I'd also like to see if they could quantify the 18 things here: http://www.pnas.org/content/112/30/E4104.abstract IL-6IL-8TNF-ALPHAANTIOXID CAP, TOTALADIPONECTIN, SERUMCRP HIGH SENSITIVITYFOLIC ACID, SERUMFERRITINGLUTATHIONE, TOTALGLYCOHEMOGLOBIN A1CARSENIC, BLOODMERCURY, BLOODLEAD, BLOODINSULINALBUMINA/G RATIOALKALINE PHOSPHATASEALAT (SGPT)ASAT (SGOT)BILIRUBIN, DIRECTBILIRUBIN, INDIRECTBILIRUBIN, TOTALUREA NITROGENCALCIUMCARBON DIOXIDE (CO2)CHLORIDECHOLESTEROL, TOTALHDL CHOL DIRECTLDL-CHOL CALCULATIONCREATININE ENZ, SERGGTGLOBULINGLUCOSELACTIC DEHYDROGENASEPHOSPHORUS INORGANICPOTASSIUMPROTEIN, TOTAL SERUMSODIUMTRIGLYCERIDESBUN/CREAT RATIOURIC ACIDCREATININE ENZ, SERGFR, MDRDPAI-1 ANTIGEN, QNTHOMOCYSTEINE, SERUMLDL PARTICLE NUMBERLDL SMALLLDL MEDIUMHDL LARGELDL PATTERNLDL PEAK SIZEMETHYLMALONIC ACIDOMEGA-3 INDEXOMEGA-6/OMEGA-3EPA/ARACHIDONIC ACIDARACHIDONIC ACIDEPADHACOPPER, RBCMANGANESE, SERUMSELENIUM, SERUMSUPEROX DISMUT SODZINC, RBCRED CELL COUNTRDWWHITE CELL COUNTPLATELET COUNTHEMATOCRITHEMOGLOBINMCVMCHMCHCMPVMONOCYTES ABSOLUTEMONOCYTESNEUTROPHILS ABSOLUTENEUTROPHIL, SEGSTOTAL NEUTROPHILS ABTOTAL NEUTROPHILSBASOPHILS ABSOLUTEBASOPHILSEOSINOPHILS ABSOLUTEEOSINOPHILSLYMPHOCYTES ABSOLUTELYMPHOCYTESVITAMIN D3, 25-OHVITAMIN D2, 25-OHVITAMIN D, 25-OH TOTHOMA-IRCORTISOL SAL BREAKFASTCORTISOL SAL LUNCHCORTISOL SAL DINNERCORTISOL SAL BEDTIMEDHEA-S SAL BREAKFAST Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted October 24, 2015 Report Share Posted October 24, 2015 Interesting. Here is Arivale's very slick website: http://www.arivale.com I'm all for quantifying one's health. But $2000 is a big chunk of cash, especially since the blood tests you list can be procured through places like privatemdlabs.com for around $500-600 (I estimate) and the Fitbit tracker is available on Amazon for only $150. That leave about $1250 you are paying for the genomic testing and Arivale's health and wellness counciling service. At $199, the 23andMe genetic testing (+ Promethease for analysis) is a heck of a lot cheaper for genetic data, but presumably you're getting a lot more genetic sequencing done (i.e. most or all of your coding genes?) with Arivale. Whether it's worth the difference in price depends on how much extra insight you can gain from the extra data. That I'm not sure about, having not done the service. If you know of reviews by subscribers I'd love to see them. It reminds me of uBiome. You get a lot of data about your gut bacteria population from their analysis of your sample, but as far as I can tell, very little in the way of USEFUL information to help you optimize your health. Hopefully that will change with time. In contrast, I've found at least parts of my 23andMe results very useful, such as my apparent increased risk of macular degeneration, which which has promoted me to be more religious about wearing sunglasses outdoors and to keep a close eye on my macular health looking for early signs of AMD during my yearly eye exams. Unfortunately it's a lot more difficult to get useful info from 23andMe data since the FDA clamped down on them, but Promethease helps and it looks like 23andMe is slowly getting back into the FDA's good graces... --Dean Link to comment Share on other sites More sharing options...
Zeta Posted October 24, 2015 Report Share Posted October 24, 2015 Hi, InquilineKea! At $199, the 23andMe genetic testing (+ Promethease for analysis) is a heck of a lot cheaper for genetic data, but presumably you're getting a lot more genetic sequencing done (i.e. most or all of your coding genes?) with Arivale. Dean, look again: "... whole genome sequencing". That's definitely, not presumably, a huge amount more sequencing! Whole genome sequencing itself is worth well over a thousand dollars. Now: I would answer the question in the light of the need I describe here involving health and symptom tracking. My answer: I think the data received from Arivale would indeed be worth the money. Beyond the needs I have for a good health and symptom tracking system, Arivale offers "coaching", which could be useful. Could. I have doubts about whether the coach would know more than I about my health and my data, but who knows. But the data itself seems worth it. I'm considering asking them whether a non-resident of Seattle can fly out and get the tests done. ("But how will we coach you when you leave?" -It's OK, it's OK, my friend. I'll survive.) Zeta Link to comment Share on other sites More sharing options...
Zeta Posted October 24, 2015 Report Share Posted October 24, 2015 Ah, but note: https://www.arivale.com/faqs What is the process to request my genetic data? If you would like the results of your whole-genome sequence, there is an additional processing charge that we are still working to establish. So total cost would be higher than $2K. Probably not much higher, though. Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted October 24, 2015 Report Share Posted October 24, 2015 Dean, look again: "... whole genome sequencing". That's definitely, not presumably, a huge amount more sequencing! Whole genome sequencing itself is worth well over a thousand dollars. Whole genome sequencing costs over $1000 (right now - coming down fast), but whether it is worth it or not depends on whether you (or someone) can make heads or tails of the ton of extra information it provides, and turn it into actionable health insights - presuming you can actually get all that data from them. I'm not convinced Arivale (or anyone) can do that now for someone with mysterious health challenges like you have. Furthermore, Arivale quite explicitly says they can't / won't help someone like you with mysterious health conditions that baffle your healthcare providers, at least right now. From elsewhere in their FAQ: What genetic test results will I see? We will be look at actionable genetic variants. That is, we examine behavioral and lifestyle-related genes such as those that increase risk for nutritional deficiencies, genes that impact response to exercise, and those that relate to obesity risk and longevity. Your coaching calls will be tailored for you to highlight some key behavioral changes based on the genetic findings that will reduce risk for disease and/or optimize health and wellbeing. What is the incremental value of the data from WGS [Whole Genome Sequencing]? The relationship between genetics and your health is a nascent science. We sequence your full genome to get the broadest number of SNPs for analysis, and to create future research and discovery [my emphasis] to potentially improve your health and the health of future generations. As future discoveries are made and we have confidence in the science, we hope to share data and actionable recommendations that will help you optimize your wellness and aid in avoiding disease. Will you tell me if I have the BRCA1 gene (breast/ovarian cancer) or other disease risks? We only report genetic information related to your nutritional wellness and lifestyle. We do not report on medical genetic results such as whether you have a genetic variant associated with an increased risk for a specific disorder. I have a pre-existing condition. Will you be helping me to manage it? We do not diagnose or treat medical conditions. This program and the information we provide are for your personal educational use in support of nutritional and other lifestyle goals to achieve and maintain wellness. Nothing we provide you should be considered, or used as a substitute for, medical advice, diagnosis or treatment. If you have a pre-existing condition, you should continue to work with your physician and medical care team. Ah, but note: https://www.arivale.com/faqs What is the process to request my genetic data? If you would like the results of your whole-genome sequence, there is an additional processing charge that we are still working to establish. So total cost would be higher than $2K. Probably not much higher, though. So at some point they hope to provide your whole genome sequence to you, and it will cost an indeterminant amount more to get it. Plus Arivale isn't likely to be of any help with interpreting the extra information, at least not at this time - its for "future research and discovery". Nor do they sound interested or willing to help clients deal with pre-existing conditions that go beyond standard health, wellness and degenerative disease risk factors based on existing blood markers and (presumably) published studies of genetic SNPs - which you can get yourself with 23andMe & Promethease (for what that's worth at this point). Perhaps their coaches will be really well qualified and insightful, since that is what it seems you're really banking on (at least for now) for your extra $1250 (+ travel costs). Before I'd plunk down > $2000 (+ travel costs), I'd want to either talk to someone who has used the service and/or one of their health coaches directly to assess whether I'm likely to get value from it or not. I note from the FAQ that an additional service Arivale provides is gut microbiome analysis. I expect they'll provide no more actionable information than is currently available from uBiome, i.e. basically zilch. Here is the response from Jessica Richman, uBiome co-founder, to my question (question #2) in her Reddit Ask Me Anything session last week (click to enlarge): If narrowly targeted companies like uBiome and 23andMe can't / won't at this time provide the kind of insights you're looking for, it seems unlikely a data aggregator like Arivale will be significantly more helpful, particularly right out of the gate... Note from this story about Arivale, the cost is $2000 per year, so you better hope they help you figure out something useful from your whole genome data, or at least can figure out how to get the data to you (and how much extra to charge you for it) in the first year or else you're going to have to commit twice that much to continue your relationship with them in year two. I'm not saying Arivale won't be worth it for you, but that the right attitude is caveat emptor - buyer beware. --Dean Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted October 24, 2015 Report Share Posted October 24, 2015 For those concerned about privacy, this article, titled Cops are asking Ancestry.com and 23andMe for their customers’ DNA might be cause for alarm. The police are now asking for (and in some instances, getting) genetic information from companies like Ancestry.com and 23andMe.com as part of criminal investigations: Both Ancestry.com and 23andMe stipulate in their privacy policies that they will turn information over to law enforcement if served with a court order. 23andMe says it’s received a couple of requests from both state law enforcement and the FBI, but that it has “successfully resisted them." Arivale has the same sort of clause in their privacy policy, from their FAQ: We cannot disclose your PHI except (1) if we deem it necessary for your health, (2) to Arivale employees, vendors, contractors that we may use to provide you service (all of whom must abide by our privacy policy), (3) for payment processing, (4) if you expressly authorize us, and (5) to the extent we are required to by law (e.g., a court order). --Dean Link to comment Share on other sites More sharing options...
Zeta Posted October 25, 2015 Report Share Posted October 25, 2015 Hey Dean, Our approach to genetic data appears to be different. I view, for example, 23andMe's health reports as fairly worthless. I want the raw data; I'll do my own research on things that Promethease (well, or 23andMe, for that matter) flags as important (Promethease summaries aren't very reliable, but they point to potential problems). Example: A carrier of one copy of the epsilon-4 variant of APOE is told by 23andMe he has 3 or so times the normal risk of getting Alzheimer's. There is so vastly much more that epsilon 4 carriers are at risk for. And the 3 times figure is probably inaccurate for men (the risk might even be the same as non-carriers' risk). Epsilon 4 carriers are also told to eat a low-fat diet. That's extremely controversial. So if I can use Arivale for a year, and get all the data (I'm going to call them to try to pin them down, of course), it might be worth it. If the coaching helps during that year, that would be a plus. But mostly I want the data. The main question for me is how long I want to wait for whole genome (or even exome) sequencing to come down in price. It's been sort of stuck at $1000+ for a while, so maybe it's about to drop a lot. I don't know. Privacy: I'm caring less and less about privacy, partly because I think it's only a matter of a small number of years before we're in a Gattaca-like world where people can sequence you if they're really motivated (grab some hair or whatever, and off they go), and that will compel stricter non-discrimination laws. (Anyone wanting to get into privacy issues might want to start a separate thread, in which I doubt I'll participate - getting healthy is becoming more important than being private, for me. Of course, my name isn't really "Zeta"... but still.) Zeta Link to comment Share on other sites More sharing options...
Dean Pomerleau Posted October 25, 2015 Report Share Posted October 25, 2015 Zeta, That makes perfect sense, given your health challenges and your ability to do your own research, rather than rely on Arivale (or anyone else) to parse through all the data for you. Besides the availability and cost of getting your full genome data from Arivale, I'd want to make sure that what they give you will be in a format that Promethease can read, or at least there is some way for you to effectively look up the alleles you carry for a particular SNP. In other words, if they just ship you a hard disk with a long string of As, Ts, Gs and Cs, its not going to be much use. --Dean Link to comment Share on other sites More sharing options...
Zeta Posted October 25, 2015 Report Share Posted October 25, 2015 If they just ship you a hard disk with a long string of As, Ts, Gs and Cs, its not going to be much use. As long as the format is consistent, which of course it will be, a simple Visual Basics macro will easily convert it into the 23andMe format. Or am I missing something? Ex.: Arivale (let's guess: no carriage return between SNPs, just another TAB): chromosome rsid position genotype 1[TAB]rs4477212[TAB]82154[TAB]AG[TAB]1[TAB]rs3094315[TAB]752566[TAB]AG[TAB]1[TAB]rs3131972[TAB]752721[TAB]AG[TAB] becomes - via a macro that searches for "rs", then moves cursor... etc., etc., - 23andMe's: rsid chromosome position genotype rs4477212[TAB]1[TAB]82154[TAB]AG[CR] rs3094315[TAB]1[TAB]752566[TAB]AG[CR] rs3131972[TAB]1[TAB]752721[TAB]AG[CR] I'm pretty sure the order of the SNPs doesn't matter for Promethease, but I'll double check with them. Zeta Link to comment Share on other sites More sharing options...
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