4 ms·

They have a lot of customers. Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. - I li

They have a lot of customers. Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. - I like my genome is contributing to science. Not just privatized science, but anyone that wants to use the API. - I like I'm able to find what I'm at risk for. For all the knowns now, and more once we continue to unravel the mysteries of the genome. - I like the ability to use d3.js to make neat visualizations on my data and open source my work. All of these pros outweigh the potential privacy issue for me. It comes down to: do I really care if someone steals my genome data? Even in the future, worst case scenario if you could spit out a clone using my genetic data, ultimately I'm not sure I really care. I'm typically an open kind of guy, though. (Indeed, all my open source work is public domain) Thought I'd share an alternative opinion.

blub 11y ago
Just so we're clear, we're talking here about a private company with an API, not a non-profit, foundation or anything that would indicate that they are working for the public interest. The FDA banned them from advertising their kits because there was no scientific proof that these kits are able to tell customers if they are at risk for something. So basically you've given away your genome data because you like making neat visualisations.
- DigitalJack 11y ago
  They might be a for profit company, but they haven't actually made a profit. I don't understand the mentality of your post. On the one hand, you seem to think that profit and public interest are mutually exclusive. They aren't. They are overlapping concerns, as in two circles on a venn diagram partially overlapping. On a personal level, you make an admonishing statement that the parent gave away their data for "neat" visualizations. I infer from this that you are saying they are giving away more than they got. The opposite of this would be profit (getting more than you gave). So you don't like 23andme because they want to get more than they give, and you admonish the parent because they gave more than they got. The FDA banned them from advertising, not because there was no scientific proof, but because they didn't know how to present the data in the way the FDA could understand. Regulatory agencies have their own lingo and methods and they are obscure, requiring the use of people who's sole job is to be the adapter between the regulators and everyone else. 23andme made a mistake likely out of ignorance regarding just how difficult it is to navigate regulatory waters. The FDA didn't grant them rights to marketing because they did anything new technically. It was because they are doing new things bureaucratically.
  - blub 11y ago
    You are really grasping at straws to defend this company. I will do both of us a favor and skip the mental gymnastics about giving, getting and profit. But... the FDA didn't "understand" 23andme's data? And the company made an innocent mistake when it comes to presenting data? This letter from the FDA describes exactly what was and was not done and obliterates any arguments like the above: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2...
    - DigitalJack 11y ago
      I work with regulating entities just like the FDA. I know what I'm talking about. I doubt you do. Especially if you think my post was so difficult to understand that it required mental gymnastics. Getting more than you give is the very definition of profit. It doesn't mean you don't give. It's a relative term. It is possible for both parties of an exchange to profit, from each party's point of view. The letter you posted was the last in a series, where the FDA, after numerous attempts to explain what they needed, gave up and pulled the plug. It's like a divorce, there are often many attempts at reconciliation before the plug is pulled, but if communication isn't working for whatever reason, the papers are served. And usually pretty easy to understand at that point.
- hugh4 11y ago
  Anyone who really wants my genetic data for nefarious purposes will probably be able to find a way to collect it.
  - dogma1138 11y ago
    And if you donated blood recently "they"(evil quotation marks!) might actually have it already, not sure about the US but in many places these days when you donate blood they ask you if you want to be added to the bone marrow donor list which means that they genotype (at the least) your sample if you agree to it, in some place i think it's even by default these days.
joering2 11y ago
>> Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. No you are not. Nobody is "aware" what 23 can do with your information just yet. This is much different than signing up for a Facebook account. I bet 23 didnt figure the way to make serious money on this just yet. I mean after all they wont stop on $99 per client (minus costs).

blub 11y ago

Just so we're clear, we're talking here about a private company with an API, not a non-profit, foundation or anything that would indicate that they are working for the public interest. The FDA banned them from advertising their kits because there was no scientific proof that these kits are able to tell customers if they are at risk for something. So basically you've given away your genome data because you like making neat visualisations.

DigitalJack 11y ago
They might be a for profit company, but they haven't actually made a profit. I don't understand the mentality of your post. On the one hand, you seem to think that profit and public interest are mutually exclusive. They aren't. They are overlapping concerns, as in two circles on a venn diagram partially overlapping. On a personal level, you make an admonishing statement that the parent gave away their data for "neat" visualizations. I infer from this that you are saying they are giving away more than they got. The opposite of this would be profit (getting more than you gave). So you don't like 23andme because they want to get more than they give, and you admonish the parent because they gave more than they got. The FDA banned them from advertising, not because there was no scientific proof, but because they didn't know how to present the data in the way the FDA could understand. Regulatory agencies have their own lingo and methods and they are obscure, requiring the use of people who's sole job is to be the adapter between the regulators and everyone else. 23andme made a mistake likely out of ignorance regarding just how difficult it is to navigate regulatory waters. The FDA didn't grant them rights to marketing because they did anything new technically. It was because they are doing new things bureaucratically.
- blub 11y ago
  You are really grasping at straws to defend this company. I will do both of us a favor and skip the mental gymnastics about giving, getting and profit. But... the FDA didn't "understand" 23andme's data? And the company made an innocent mistake when it comes to presenting data? This letter from the FDA describes exactly what was and was not done and obliterates any arguments like the above: http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2013/ucm376296.htm http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2...
  - DigitalJack 11y ago
    I work with regulating entities just like the FDA. I know what I'm talking about. I doubt you do. Especially if you think my post was so difficult to understand that it required mental gymnastics. Getting more than you give is the very definition of profit. It doesn't mean you don't give. It's a relative term. It is possible for both parties of an exchange to profit, from each party's point of view. The letter you posted was the last in a series, where the FDA, after numerous attempts to explain what they needed, gave up and pulled the plug. It's like a divorce, there are often many attempts at reconciliation before the plug is pulled, but if communication isn't working for whatever reason, the papers are served. And usually pretty easy to understand at that point.
hugh4 11y ago
Anyone who really wants my genetic data for nefarious purposes will probably be able to find a way to collect it.
- dogma1138 11y ago
  And if you donated blood recently "they"(evil quotation marks!) might actually have it already, not sure about the US but in many places these days when you donate blood they ask you if you want to be added to the bone marrow donor list which means that they genotype (at the least) your sample if you agree to it, in some place i think it's even by default these days.

joering2 11y ago

>> Many of my software engineering friends, myself included, are well aware of the privacy implications and got a kit anyway. No you are not. Nobody is "aware" what 23 can do with your information just yet. This is much different than signing up for a Facebook account. I bet 23 didnt figure the way to make serious money on this just yet. I mean after all they wont stop on $99 per client (minus costs).