8 ms·

Ask HN: Is 23andme (and others similar to it) worth the cost?

8 points by vijayr 9y ago

Privacy concerns aside, have you tried them? Did you really learn anything new, especially from health perspective?

DKnoll 9y ago
Several members of my family and I have used 23AndMe. It's interesting. I haven't logged into the site since about a week or two after getting it, but the health stuff was interesting (didn't really learn anything new but it was cool). The ancestry portion is the biggest appeal for most people, and my mom gets a kick out of it as she's into genealogy. On the other hand, where it was a novelty for my family, it has ruined others... so make sure it's a door you want to open. ;)
- vijayr 9y ago
  I am not too interested in ancestry, I'll probably just look at it out of curiosity and thats it. More interested in their health reports. What do you mean by "ruined others"?
  - DKnoll 9y ago
    https://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme https://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-...
  - panax 9y ago
    23andme was invaluable to me for health, but that is rarely the case. Most likely you won't learn anything profound from it, though if do you learn something important it is probably not going to be good news. I personally much prefer that I know my results now and be able to take action to address them than to not know, but I am also able to take a sort of stoic view toward it without worrying about it and allowing it to impact me negatively. Many people would rather remain ignorant of potential risk factors which may actually never impact them than worry their whole lives about something outside of their control(at least for now. CRISPR?). It can severely disrupt the lives of some types of people and cause them anxiety. So before you take it you should ask yourself if you are the type of person who would worry and obsess over it and allow it to disrupt your life. Though if you do find unpleasant results, most genotypes, with a few exceptions, are only weakly correlated with their risks so don't take most of the results too literally. And even for many of the genotypes with very strongly established links to disease, most are only risk factors, and only increase the probability of an outcome. I don't think 23andme is currently reporting on health risks anymore until they get things cleared with the FDA, though, and the other reports they currently offer are not really useful. You still have access to the raw data, though, and can use a third party like https://www.snpedia.com/index.php/Promethease https://www.snpedia.com/index.php/Promethease to analyze the data. It will generate a report for you, but remember these reports will try to link your SNPs to pretty much any studies available, even when there is very little evidence or low confidence of the interpretation. Don't take most of the results seriously unless it is well studied and well established. This may be difficult to determine sometimes unless you have a background in science or medicine, and it is a good idea to consult a medical professional first if there is something that you think is significant and concerns you.
    - DKnoll 9y ago
      They still offer health information in Canada (where I live).
    - deleted 9y ago
      [deleted]
    - tedmiston 9y ago
      I've heard of people commonly using the service Promethease ($5) to match up their data from 23andMe with SNPedia until the issue with the FDA that prevents collecting data and sharing analysis from one service is resolved. https://www.snpedia.com/index.php/Promethease https://www.snpedia.com/index.php/Promethease
- bradknowles 9y ago
  If you want ancestry, then why not use the larger DNA database service through ancestry.com? Seems to me like that would be the ideal solution for you.
  - DKnoll 9y ago
    I can import my 23AndMe data into Ancestry.com.
arca_vorago 9y ago
23andme and similar have a horrible track record of privacy... I would highly suggest against using a service that combines the sequencing and the analysis. I would suggest, however, if you are interested in this line of data based health investigation, to have the sequencing done by someone good at sequencing and then have analysis done separately (or in conjunction between the third party analyzer and the sequencer). The cost would be more, but with a smaller shop you are much more likely to be able to request stringent data secrecy or even deletion. I say this as a person who sysadminned a genetics lab, so my scientific knowledge of the subject is limited, but I did see the practical issues around the industry.
- vijayr 9y ago
  okay, any recommendations of smaller shops?
  - arca_vorago 9y ago
    Sorry I don't, its been almost 3 years now since I was in the industry, but the good news is they tend to have a good seo presence so duckduckgo should help.
- DKnoll 9y ago
  What are the privacy concerns with 23AndMe? Curious as I'm a user.
  - chatmasta 9y ago
    They're literally storing, sequencing, and analyzing your DNA. What do you think the privacy concerns are? Most likely, the biggest cost of using 23andme is not evident yet. But as some others have touched on, I could easily see it becoming a prerequisite for health insurance in the near future. Do you really want to give up this data now, without any idea the impact it may have on your financial situation in 10 years? Obviously there's no right answer to that question but it's worth considering.
    - 9y ago
2_listerine_pls 9y ago
I read that they sell your information. You could try using a different name, if possible. However, be ware that they might do some type of data consolidation with other services in the future. For instance, a service you do at a hospital in 6 years could help uncover your identity because that hospital uses a third party. I mean, it could potentially even affect your health insurance 10 years from now.
- bjourne 9y ago
  I signed up before their tos said they would sell my data. I have no problem with it being freely available for researchers, but them selling my dna for profit is complete bullshit.
  - tedmiston 9y ago
    It seems like one can opt out of having their data shared to third parties. > It is true that 23andMe’s big moneymaker is consumer data, not consumer DNA testing kits. Black said that more than 80 percent of 23andMe’s two million-plus customers consent to having their data used for research. https://gizmodo.com/23andme-is-selling-your-data-but-not-how-you-think-1794340474 https://gizmodo.com/23andme-is-selling-your-data-but-not-how...
mchannon 9y ago
For my family, the heritage was a bit educational, though it often felt a bit like wrong guesses (if you're 25% English, 25% Scottish, 25% Welsh, 25% Irish, you'll come back 100% "British Isles"). My spouse's 25% Native American data was even worse, about 1/8 of it coming in as "East Asian". Finding specific gene data was also cool, but disappointing. If you know that a certain gene is defective, there's no way of knowing if your C should be a G, and a lot of gene markers aren't even findable. It's like a mostly-complete index for a book that's 25% written, and 5% of that is flat out wrong. So the health stuff was disappointing. I do feel, though, that obtaining the service was a step in the right direction for the industry someday getting this right. As it gains critical mass, it's a great resource for connecting with second cousins as, if your family is like mine, older generations grew apart and want to reconnect.
- DKnoll 9y ago
  > For my family, the heritage was a bit educational, though it often felt a bit like wrong guesses (if you're 25% English, 25% Scottish, 25% Welsh, 25% Irish, you'll come back 100% "British Isles"). My spouse's 25% Native American data was even worse, about 1/8 of it coming in as "East Asian". For me it groups British & Irish together, which makes sense if we're considering genetic ancestry, not geographic/societal. For example German and French are also grouped together for the same reason.
drakonka 9y ago
I thought it was interesting but didn't result in my learning some information that I can actually act on. I extracted my data from the site and instead of just using their own site analysis tools I uploaded it to some third party analyzers, which provided more detailed information that 23andme is either not willing or not allowed by regulations to share. All of my health findings were "good news" that made me feel nice, even though I know they are to be taken with a big grain of salt.
anikdas 9y ago
been using Nylas Mail. Works pretty well. https://www.nylas.com/nylas-mail/ https://www.nylas.com/nylas-mail/

8 points by vijayr 9y ago

Privacy concerns aside, have you tried them? Did you really learn anything new, especially from health perspective?

Several members of my family and I have used 23AndMe. It's interesting. I haven't logged into the site since about a week or two after getting it, but the health stuff was interesting (didn't really learn anything new but it was cool). The ancestry portion is the biggest appeal for most people, and my mom gets a kick out of it as she's into genealogy. On the other hand, where it was a novelty for my family, it has ruined others... so make sure it's a door you want to open. ;)

vijayr 9y ago
I am not too interested in ancestry, I'll probably just look at it out of curiosity and thats it. More interested in their health reports. What do you mean by "ruined others"?
- DKnoll 9y ago
  https://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-gave-my-parents-the-gift-of-divorce-23andme https://www.vox.com/2014/9/9/5975653/with-genetic-testing-i-...
- panax 9y ago
  23andme was invaluable to me for health, but that is rarely the case. Most likely you won't learn anything profound from it, though if do you learn something important it is probably not going to be good news. I personally much prefer that I know my results now and be able to take action to address them than to not know, but I am also able to take a sort of stoic view toward it without worrying about it and allowing it to impact me negatively. Many people would rather remain ignorant of potential risk factors which may actually never impact them than worry their whole lives about something outside of their control(at least for now. CRISPR?). It can severely disrupt the lives of some types of people and cause them anxiety. So before you take it you should ask yourself if you are the type of person who would worry and obsess over it and allow it to disrupt your life. Though if you do find unpleasant results, most genotypes, with a few exceptions, are only weakly correlated with their risks so don't take most of the results too literally. And even for many of the genotypes with very strongly established links to disease, most are only risk factors, and only increase the probability of an outcome. I don't think 23andme is currently reporting on health risks anymore until they get things cleared with the FDA, though, and the other reports they currently offer are not really useful. You still have access to the raw data, though, and can use a third party like https://www.snpedia.com/index.php/Promethease https://www.snpedia.com/index.php/Promethease to analyze the data. It will generate a report for you, but remember these reports will try to link your SNPs to pretty much any studies available, even when there is very little evidence or low confidence of the interpretation. Don't take most of the results seriously unless it is well studied and well established. This may be difficult to determine sometimes unless you have a background in science or medicine, and it is a good idea to consult a medical professional first if there is something that you think is significant and concerns you.
  - DKnoll 9y ago
    They still offer health information in Canada (where I live).
  - deleted 9y ago
    [deleted]
  - tedmiston 9y ago
    I've heard of people commonly using the service Promethease ($5) to match up their data from 23andMe with SNPedia until the issue with the FDA that prevents collecting data and sharing analysis from one service is resolved. https://www.snpedia.com/index.php/Promethease https://www.snpedia.com/index.php/Promethease
bradknowles 9y ago
If you want ancestry, then why not use the larger DNA database service through ancestry.com? Seems to me like that would be the ideal solution for you.
- DKnoll 9y ago
  I can import my 23AndMe data into Ancestry.com.

arca_vorago 9y ago

23andme and similar have a horrible track record of privacy... I would highly suggest against using a service that combines the sequencing and the analysis. I would suggest, however, if you are interested in this line of data based health investigation, to have the sequencing done by someone good at sequencing and then have analysis done separately (or in conjunction between the third party analyzer and the sequencer). The cost would be more, but with a smaller shop you are much more likely to be able to request stringent data secrecy or even deletion. I say this as a person who sysadminned a genetics lab, so my scientific knowledge of the subject is limited, but I did see the practical issues around the industry.

vijayr 9y ago
okay, any recommendations of smaller shops?
- arca_vorago 9y ago
  Sorry I don't, its been almost 3 years now since I was in the industry, but the good news is they tend to have a good seo presence so duckduckgo should help.
DKnoll 9y ago
What are the privacy concerns with 23AndMe? Curious as I'm a user.
- chatmasta 9y ago
  They're literally storing, sequencing, and analyzing your DNA. What do you think the privacy concerns are? Most likely, the biggest cost of using 23andme is not evident yet. But as some others have touched on, I could easily see it becoming a prerequisite for health insurance in the near future. Do you really want to give up this data now, without any idea the impact it may have on your financial situation in 10 years? Obviously there's no right answer to that question but it's worth considering.
  - 9y ago

2_listerine_pls 9y ago

I read that they sell your information. You could try using a different name, if possible. However, be ware that they might do some type of data consolidation with other services in the future. For instance, a service you do at a hospital in 6 years could help uncover your identity because that hospital uses a third party. I mean, it could potentially even affect your health insurance 10 years from now.

bjourne 9y ago
I signed up before their tos said they would sell my data. I have no problem with it being freely available for researchers, but them selling my dna for profit is complete bullshit.
- tedmiston 9y ago
  It seems like one can opt out of having their data shared to third parties. > It is true that 23andMe’s big moneymaker is consumer data, not consumer DNA testing kits. Black said that more than 80 percent of 23andMe’s two million-plus customers consent to having their data used for research. https://gizmodo.com/23andme-is-selling-your-data-but-not-how-you-think-1794340474 https://gizmodo.com/23andme-is-selling-your-data-but-not-how...

mchannon 9y ago

For my family, the heritage was a bit educational, though it often felt a bit like wrong guesses (if you're 25% English, 25% Scottish, 25% Welsh, 25% Irish, you'll come back 100% "British Isles"). My spouse's 25% Native American data was even worse, about 1/8 of it coming in as "East Asian". Finding specific gene data was also cool, but disappointing. If you know that a certain gene is defective, there's no way of knowing if your C should be a G, and a lot of gene markers aren't even findable. It's like a mostly-complete index for a book that's 25% written, and 5% of that is flat out wrong. So the health stuff was disappointing. I do feel, though, that obtaining the service was a step in the right direction for the industry someday getting this right. As it gains critical mass, it's a great resource for connecting with second cousins as, if your family is like mine, older generations grew apart and want to reconnect.

DKnoll 9y ago
> For my family, the heritage was a bit educational, though it often felt a bit like wrong guesses (if you're 25% English, 25% Scottish, 25% Welsh, 25% Irish, you'll come back 100% "British Isles"). My spouse's 25% Native American data was even worse, about 1/8 of it coming in as "East Asian". For me it groups British & Irish together, which makes sense if we're considering genetic ancestry, not geographic/societal. For example German and French are also grouped together for the same reason.

drakonka 9y ago

I thought it was interesting but didn't result in my learning some information that I can actually act on. I extracted my data from the site and instead of just using their own site analysis tools I uploaded it to some third party analyzers, which provided more detailed information that 23andme is either not willing or not allowed by regulations to share. All of my health findings were "good news" that made me feel nice, even though I know they are to be taken with a big grain of salt.

anikdas 9y ago

been using Nylas Mail. Works pretty well. https://www.nylas.com/nylas-mail/ https://www.nylas.com/nylas-mail/