7 ms·

I think this company is interesting but am disturbed by every time I read an article about them, they just laugh off privacy concerns. It's not 2013 I'm worrie

I think this company is interesting but am disturbed by every time I read an article about them, they just laugh off privacy concerns. It's not 2013 I'm worried about with someone accessing this data, it's 2023. Says Andy Page: "I view this as a tidal wave of inevitable data and a trend in the marketplace. The technology is available; the price point is decreasing. There are so many organizations and engineers and companies that are focused on this." Of course you see it as a trend, or at least your pocketbook depends on it being one. The fact that he isn't responding with all the robust steps they do to protect data leads me to believe there's not enough concern at this company for privacy to trust them. Maybe that's okay when it's yet another SV social bullcrap site, but for medicine? Nah.

Tichy 13y ago
It seems only a matter of time until the data base leaks, and I wonder how valuable that information might be. Could it be used to find matches for organ donation, for example (with subsequent accidents happen to matching donors)? I know, very "movie scenario" threat, but it is just one creepy idea.
dil4heys 13y ago
And you thought Zuckerberg was bad. The cavalier attitude towards privacy that pervades the field of genomics is deeply troubling to me. From the article: "23andMe's privacy statement clearly states that it collects a person's genetic, registration, web browsing, and self-reported information. The company can share its data with third parties '[after] it has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.'" Having read that, consider that "a team of geneticists reported Thursday in the journal Science that it was able to figure out the names of people who had donated their DNA to research -- even though test subjects' identities were stripped from their genomic data." (Source: http://articles.latimes.com/2013/jan/18/science/la-sci-sn-george-church-dna-genome-privacy-20130118 http://articles.latimes.com/2013/jan/18/science/la-sci-sn-ge...) Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin. It doesn't seem entirely implausible that the two companies could have joint business ventures down the road. I wonder how valuable "anonymized" genomic sequences would be to advertisers.
- AceJohnny2 13y ago
  > Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin. Not for long: http://allthingsd.com/20130828/google-co-founder-sergey-brin-and-23andme-co-founder-anne-wojcicki-have-split/ http://allthingsd.com/20130828/google-co-founder-sergey-brin...
- dweinus 13y ago
  From the LA Times article: "Using information posted to genealogy websites and other publicly available Internet resources, the Whitehead Institute researchers were able to ferret out the names of nearly 50 people" They don't link the study, so it is hard to tell, but it appears that what actually happened is they used self-reported identifying information linked to DNA entries. It's not apparent that they did any genetic analysis whatsoever. That is still certainly a privacy attack vector, but one on par with getting your email hacked because you always use your birthday as you password.
  - berberous 13y ago
    That's not correct. The Personal Genome Project (PGP) is a Harvard-run study that aims to get 100k people to publicly post their full genome, along with their health and trait information. The study took some of these public DNA samples, and searched genealogy databases to find likely relatives. The self-reported surnames were thus those of distant relatives, not of the PGP-participants themselves. The researches then combined those likely surnames with information such as zip codes on the PGP public profiles to correctly identify several participants (given that a zip code, gender, and surname is often enough information to uniquely identify a person). It should be noted that the PGP has a rigorous education and consent process of the risks of publicly posting DNA. So while the study may have surprised some of the participants, it's not something any of them were expecting could never happen. You can read more info on the study here: http://www.wired.com/wiredscience/2013/01/your-genome-could-reveal-your-identity/ http://www.wired.com/wiredscience/2013/01/your-genome-could-...
    - dweinus 13y ago
      Thank you, I stand corrected! Thanks to the other commenter with the study link too.
seiji 13y ago
DNA privacy seems overrated to me. If you really want my DNA, it's easier to just follow me around for half an hour or stalk me at a restaurant, isn't it? Only the president poops in bags.

Tichy 13y ago

It seems only a matter of time until the data base leaks, and I wonder how valuable that information might be. Could it be used to find matches for organ donation, for example (with subsequent accidents happen to matching donors)? I know, very "movie scenario" threat, but it is just one creepy idea.

dil4heys 13y ago

And you thought Zuckerberg was bad. The cavalier attitude towards privacy that pervades the field of genomics is deeply troubling to me. From the article: "23andMe's privacy statement clearly states that it collects a person's genetic, registration, web browsing, and self-reported information. The company can share its data with third parties '[after] it has been stripped of Registration Information and combined with data from a number of other users sufficient to minimize the possibility of exposing individual-level information while still providing scientific evidence.'" Having read that, consider that "a team of geneticists reported Thursday in the journal Science that it was able to figure out the names of people who had donated their DNA to research -- even though test subjects' identities were stripped from their genomic data." (Source: http://articles.latimes.com/2013/jan/18/science/la-sci-sn-george-church-dna-genome-privacy-20130118 http://articles.latimes.com/2013/jan/18/science/la-sci-sn-ge...) Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin. It doesn't seem entirely implausible that the two companies could have joint business ventures down the road. I wonder how valuable "anonymized" genomic sequences would be to advertisers.

AceJohnny2 13y ago
> Anne Wojcicki, co-founder of 23andme, is married to Google co-founder Sergey Brin. Not for long: http://allthingsd.com/20130828/google-co-founder-sergey-brin-and-23andme-co-founder-anne-wojcicki-have-split/ http://allthingsd.com/20130828/google-co-founder-sergey-brin...
dweinus 13y ago
From the LA Times article: "Using information posted to genealogy websites and other publicly available Internet resources, the Whitehead Institute researchers were able to ferret out the names of nearly 50 people" They don't link the study, so it is hard to tell, but it appears that what actually happened is they used self-reported identifying information linked to DNA entries. It's not apparent that they did any genetic analysis whatsoever. That is still certainly a privacy attack vector, but one on par with getting your email hacked because you always use your birthday as you password.
- berberous 13y ago
  That's not correct. The Personal Genome Project (PGP) is a Harvard-run study that aims to get 100k people to publicly post their full genome, along with their health and trait information. The study took some of these public DNA samples, and searched genealogy databases to find likely relatives. The self-reported surnames were thus those of distant relatives, not of the PGP-participants themselves. The researches then combined those likely surnames with information such as zip codes on the PGP public profiles to correctly identify several participants (given that a zip code, gender, and surname is often enough information to uniquely identify a person). It should be noted that the PGP has a rigorous education and consent process of the risks of publicly posting DNA. So while the study may have surprised some of the participants, it's not something any of them were expecting could never happen. You can read more info on the study here: http://www.wired.com/wiredscience/2013/01/your-genome-could-reveal-your-identity/ http://www.wired.com/wiredscience/2013/01/your-genome-could-...
  - dweinus 13y ago
    Thank you, I stand corrected! Thanks to the other commenter with the study link too.

seiji 13y ago

DNA privacy seems overrated to me. If you really want my DNA, it's easier to just follow me around for half an hour or stalk me at a restaurant, isn't it? Only the president poops in bags.