6 ms·

I just want to pay for a service or product and have that be the end of my interaction with the company as well as the end of the company's use, possession, and

by krisdol 10y ago

I just want to pay for a service or product and have that be the end of my interaction with the company as well as the end of the company's use, possession, and monetization of my data. When I buy a stick of gum I deprive the store of that stick of gum in exchange for money. On the Internet I'm purchasing something but the company gets to hold on to and share it indefinitely. It not only benefits from the money exchange but also continues to use the very product they sold me to continue to beef up their profit. Taking my money is apparently just a nice bonus but not what they're really after. I wish the privacy cost was stated in as clear terms at transaction time as the monetary cost, and I believe that users should receive royalties when their data is used for any continued access.

biomcgary 10y ago
Your genetic data is nearly worthless, even to you, unless the aggregated database exists. The real cost is in the analysis and interpretation not the collection of the data. Thus, for your own benefit (i.e., clear knowledge of your genetic risks), they must monetize your data (i.e., find someone to pay them to perform the analysis, whether drug company or charity, e.g., American Heart Association). As long as they are up front about what they are doing and protecting your identity, your interests and theirs are fairly aligned. I know a study funded by a famous non-profit (you have heard of them, I am sure) that advances the field of study substantially, but it is not yet published (and I am not directly involved).
- coldtea 10y ago
  >Your genetic data is nearly worthless, even to you, unless the aggregated database exists. It's not about stealing from X or Y individual -- it's about privatizing and locking down an immensely useful and valuable global resource -- that "aggregated database".
- jamiesonbecker 10y ago
  > Your genetic data is nearly worthless, even to you... Apparently Genentech disagreed 60 million times, and twelve other drug/genetics companies disagreed possibly the same number of times. For only 800k instances of you.
- iwontreddit 10y ago
  What the fuck is with the shills on hacker news? > Your genetic data is nearly worthless, even to you, unless the aggregated database exists. Nonsense. There is value in individual data and aggregated data. > they must monetize your data BUT YOU PAY THEM for their service. If they want to monetize MY data, then they should pay ME. You are aware that 23andme charges you a fee right? > As long as they are up front about what they are doing They aren't up front. If 23andme wants to use/sell your genetic material, then they should get your explicit consent and permission.
  - afarrell 10y ago
    > What the fuck is with the shills on hacker news? There exist people who sincerely disagree with you. > they should get your explicit consent and permission I remember signing up for 23andme a number of years back and hoping my data would be used for drug discovery. This was a big part of their marketing at the time. I can't fathom how anyone didn't know that they were going to do this.
    - willsher 10y ago
      That's part of the point of doing it to me. They can, hopefully, use the data in a useful way. Sure, they may make it private and paid for the data set they have, but I also have a copy of the data I can upload to other more publicly minded companies. From a selfish point of view, perhaps my DNA will contribute to solving some of the illnesses I'm more prone to to or already have, and help my children if they treatment. From a more altruist view, it may help others too. Do I trust Big Pharma? I'm not sure I do, but what I do know is medical advances are making many people's lives more bearable and longer, both in developed and developing nations.
    - biomcgary 10y ago
      Since I cannot respond to the flagged post: > What the fuck is with the shills on hacker news? I am not defending 23andMe as a company, as I am not aware of how clearly they have communicated with customers in the past or whether they have stuck to what they have said. I do know a number of people that were excited about their results being used in research, so I assumed it was common knowledge that was the path that 23andMe was taking. I tend to be more suspicious, so I have stayed away from their product/service/exploitation myself. I am, however, excited about some of the academic, non-profit work (by friends of mine) made possible by their data, which will eventually benefit mothers and children during pregnancy. > Nonsense. There is value in individual data and aggregated data. Sorry, I left the background and my assumptions unstated. In general, genetic information is of no value without substantial background knowledge (e.g., much like a book in a language you don't understand). Some of that knowledge is in the public domain and has been laboriously collected over long periods of time and at great public expense through grants (e.g., molecular studies tracking down mutations that affect proteins). The diseases that affect large numbers of people involve lots of genetic variants and new approaches are needed (e.g., Genome Wide Association Studies). For statistical reasons, these approaches require very large numbers of participants to detect variants that contribute to the disease. Statistically, people using 23andMe are more likely to benefit (albeit modestly) from this knowledge, which requires aggregated data, rather than the rare disease data.
- ams6110 10y ago
  for your own benefit (i.e., clear knowledge of your genetic risks) It's not at all clear to me that knowledge of my genetic risks is beneficial to me, on balance. Knowledge of risk is only beneficial if it means something can be done to mitigate that risk. For many diseases this is not the case. However such knowledge could certainly work against me in other ways, such as being denied employment or insurance.
- phyzome 10y ago
  And the privacy of my genetic data is not worth anything to those other parties, but it's sure worth something to me.
kbenson 10y ago
What makes you think that's ever existed? Have you ever entered your phone number or member number at a business for a discount? You think they aren't tracking that? What about just tracking you by some hash of you CC info? I'm sure there were 19th century New York shopkeepers that noticed a particular influx of specific immigrant nationalities in their shops, and may have inquired further and tailored their goods slightly. Every good business owner has used info about their customers to improve their business. It's impossible to have a transaction without leaving some information. This, like most "new" things enabled by technology, is a matter of scale. We need considered and appropriate limitations to protect us, not knee-jerk reactions that actually cause harm because we haven't considered everything. Personal liberty is important, but it doesn't trump all considerations. If we can actually utilize the information to help research new treatments and further our knowledge of the human body, allowing the collection, and careful protection and anonymozation of the data is for the greater good, and worth the risk Imo. This is a good thing to legislate though.
- awqrre 10y ago
  Do you really compare DNA and phone numbers? If you want to pay more for insurance, give some company your DNA and install a GPS tracker in your car (provided by the insurance company)... Anyways, for phone numbers, if I don't need to be contacted by a company, I give one of my free number that never rings... they can still track me but...
  - kbenson 10y ago
    > > > I just want to pay for a service or product and have that be the end of my interaction with the company as well as the end of the company's use, possession, and monetization of my data. > Do you really compare DNA and phone numbers? I think you've let the prior context of the discussion influence your interpretation of my point. My comment had two two main points. First, that we've never really had a system where transactions did not convey some additional information about us, our preferences, and the market (what's more, "my data" is an interesting and often under-explored topic, IMO. If data wants to be free, and you go spreading it around, do you really have a singular claim to it anymore?). Second, there are competing interests of the individual and society when we are talking about aggregating data that might yield substantial benefits for people in general (as in the human race). We've made considerations about this before, such as with vaccination. I'm not making a case that a private company should be able to keep all info about your genetic makeup and profit from it privately. I am taking a position that we should carefully consider the possible benefits of aggregating genetic info, the possible downsides in loss of privacy and other possible problems, see if there are ways we can increase the benefits and/or decrease the downsides, and try to make an informed decision, with the minimum FUD possible.
deleted 10y ago
[deleted]
moultano 10y ago
Have you ever had more than a minor annoyance result from some company's use of your data? I understand the instinct and ick factor, but I've rarely seen an actual practical consequence.
- bduerst 10y ago
  I've asked this question before and it is typically answered with nothing more than hypothetical "nightmare" scenarios.
  - rickycook 10y ago
    there are plenty of situations that only exist in nightmare scenarios. that doesn't make them any less scary. someone brought up seat belts further up, and it's a decent example. why wear a seat belt? it only protects you in nightmare scenarios
    - iteabagkevin2 10y ago
      Wearing a seatbelt protects you in very real and measurable ways. Crashes happen many thousands of times per year. You can't say the same about your anonymous data being used.
    - moultano 10y ago
      Fatal car crashes are common, and car crashes that would have been fatal without a seatbelt are extremely common.
    - bduerst 10y ago
      A seat belt protects you from real & practical scenarios, not just nightmare scenarios.
- shawn-butler 10y ago
  You wouldn't know what the practical consequences are because you are entirely in the dark where the data goes. That is kind of the point.
kalefranz 10y ago
> I wish the privacy cost was stated in as clear terms at transaction time as the monetary cost Privacy Center link directly from the home page: https://www.23andme.com/privacy/ https://www.23andme.com/privacy/ Privacy Policy Highlights https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/ Full Policy https://www.23andme.com/about/privacy/#Full https://www.23andme.com/about/privacy/#Full This information isn't hard to find--you have to first not assume it doesn't exist I guess. * Disclosure, former 23andMe employee.

by krisdol 10y ago

biomcgary 10y ago

Your genetic data is nearly worthless, even to you, unless the aggregated database exists. The real cost is in the analysis and interpretation not the collection of the data. Thus, for your own benefit (i.e., clear knowledge of your genetic risks), they must monetize your data (i.e., find someone to pay them to perform the analysis, whether drug company or charity, e.g., American Heart Association). As long as they are up front about what they are doing and protecting your identity, your interests and theirs are fairly aligned. I know a study funded by a famous non-profit (you have heard of them, I am sure) that advances the field of study substantially, but it is not yet published (and I am not directly involved).

coldtea 10y ago
>Your genetic data is nearly worthless, even to you, unless the aggregated database exists. It's not about stealing from X or Y individual -- it's about privatizing and locking down an immensely useful and valuable global resource -- that "aggregated database".
jamiesonbecker 10y ago
> Your genetic data is nearly worthless, even to you... Apparently Genentech disagreed 60 million times, and twelve other drug/genetics companies disagreed possibly the same number of times. For only 800k instances of you.
iwontreddit 10y ago
What the fuck is with the shills on hacker news? > Your genetic data is nearly worthless, even to you, unless the aggregated database exists. Nonsense. There is value in individual data and aggregated data. > they must monetize your data BUT YOU PAY THEM for their service. If they want to monetize MY data, then they should pay ME. You are aware that 23andme charges you a fee right? > As long as they are up front about what they are doing They aren't up front. If 23andme wants to use/sell your genetic material, then they should get your explicit consent and permission.
- afarrell 10y ago
  > What the fuck is with the shills on hacker news? There exist people who sincerely disagree with you. > they should get your explicit consent and permission I remember signing up for 23andme a number of years back and hoping my data would be used for drug discovery. This was a big part of their marketing at the time. I can't fathom how anyone didn't know that they were going to do this.
  - willsher 10y ago
    That's part of the point of doing it to me. They can, hopefully, use the data in a useful way. Sure, they may make it private and paid for the data set they have, but I also have a copy of the data I can upload to other more publicly minded companies. From a selfish point of view, perhaps my DNA will contribute to solving some of the illnesses I'm more prone to to or already have, and help my children if they treatment. From a more altruist view, it may help others too. Do I trust Big Pharma? I'm not sure I do, but what I do know is medical advances are making many people's lives more bearable and longer, both in developed and developing nations.
  - biomcgary 10y ago
    Since I cannot respond to the flagged post: > What the fuck is with the shills on hacker news? I am not defending 23andMe as a company, as I am not aware of how clearly they have communicated with customers in the past or whether they have stuck to what they have said. I do know a number of people that were excited about their results being used in research, so I assumed it was common knowledge that was the path that 23andMe was taking. I tend to be more suspicious, so I have stayed away from their product/service/exploitation myself. I am, however, excited about some of the academic, non-profit work (by friends of mine) made possible by their data, which will eventually benefit mothers and children during pregnancy. > Nonsense. There is value in individual data and aggregated data. Sorry, I left the background and my assumptions unstated. In general, genetic information is of no value without substantial background knowledge (e.g., much like a book in a language you don't understand). Some of that knowledge is in the public domain and has been laboriously collected over long periods of time and at great public expense through grants (e.g., molecular studies tracking down mutations that affect proteins). The diseases that affect large numbers of people involve lots of genetic variants and new approaches are needed (e.g., Genome Wide Association Studies). For statistical reasons, these approaches require very large numbers of participants to detect variants that contribute to the disease. Statistically, people using 23andMe are more likely to benefit (albeit modestly) from this knowledge, which requires aggregated data, rather than the rare disease data.
ams6110 10y ago
for your own benefit (i.e., clear knowledge of your genetic risks) It's not at all clear to me that knowledge of my genetic risks is beneficial to me, on balance. Knowledge of risk is only beneficial if it means something can be done to mitigate that risk. For many diseases this is not the case. However such knowledge could certainly work against me in other ways, such as being denied employment or insurance.
phyzome 10y ago
And the privacy of my genetic data is not worth anything to those other parties, but it's sure worth something to me.

kbenson 10y ago

What makes you think that's ever existed? Have you ever entered your phone number or member number at a business for a discount? You think they aren't tracking that? What about just tracking you by some hash of you CC info? I'm sure there were 19th century New York shopkeepers that noticed a particular influx of specific immigrant nationalities in their shops, and may have inquired further and tailored their goods slightly. Every good business owner has used info about their customers to improve their business. It's impossible to have a transaction without leaving some information. This, like most "new" things enabled by technology, is a matter of scale. We need considered and appropriate limitations to protect us, not knee-jerk reactions that actually cause harm because we haven't considered everything. Personal liberty is important, but it doesn't trump all considerations. If we can actually utilize the information to help research new treatments and further our knowledge of the human body, allowing the collection, and careful protection and anonymozation of the data is for the greater good, and worth the risk Imo. This is a good thing to legislate though.

awqrre 10y ago
Do you really compare DNA and phone numbers? If you want to pay more for insurance, give some company your DNA and install a GPS tracker in your car (provided by the insurance company)... Anyways, for phone numbers, if I don't need to be contacted by a company, I give one of my free number that never rings... they can still track me but...
- kbenson 10y ago
  > > > I just want to pay for a service or product and have that be the end of my interaction with the company as well as the end of the company's use, possession, and monetization of my data. > Do you really compare DNA and phone numbers? I think you've let the prior context of the discussion influence your interpretation of my point. My comment had two two main points. First, that we've never really had a system where transactions did not convey some additional information about us, our preferences, and the market (what's more, "my data" is an interesting and often under-explored topic, IMO. If data wants to be free, and you go spreading it around, do you really have a singular claim to it anymore?). Second, there are competing interests of the individual and society when we are talking about aggregating data that might yield substantial benefits for people in general (as in the human race). We've made considerations about this before, such as with vaccination. I'm not making a case that a private company should be able to keep all info about your genetic makeup and profit from it privately. I am taking a position that we should carefully consider the possible benefits of aggregating genetic info, the possible downsides in loss of privacy and other possible problems, see if there are ways we can increase the benefits and/or decrease the downsides, and try to make an informed decision, with the minimum FUD possible.

deleted 10y ago

[deleted]

moultano 10y ago

Have you ever had more than a minor annoyance result from some company's use of your data? I understand the instinct and ick factor, but I've rarely seen an actual practical consequence.

bduerst 10y ago
I've asked this question before and it is typically answered with nothing more than hypothetical "nightmare" scenarios.
- rickycook 10y ago
  there are plenty of situations that only exist in nightmare scenarios. that doesn't make them any less scary. someone brought up seat belts further up, and it's a decent example. why wear a seat belt? it only protects you in nightmare scenarios
  - iteabagkevin2 10y ago
    Wearing a seatbelt protects you in very real and measurable ways. Crashes happen many thousands of times per year. You can't say the same about your anonymous data being used.
  - moultano 10y ago
    Fatal car crashes are common, and car crashes that would have been fatal without a seatbelt are extremely common.
  - bduerst 10y ago
    A seat belt protects you from real & practical scenarios, not just nightmare scenarios.
shawn-butler 10y ago
You wouldn't know what the practical consequences are because you are entirely in the dark where the data goes. That is kind of the point.

kalefranz 10y ago

> I wish the privacy cost was stated in as clear terms at transaction time as the monetary cost Privacy Center link directly from the home page: https://www.23andme.com/privacy/ https://www.23andme.com/privacy/ Privacy Policy Highlights https://www.23andme.com/about/privacy/ https://www.23andme.com/about/privacy/ Full Policy https://www.23andme.com/about/privacy/#Full https://www.23andme.com/about/privacy/#Full This information isn't hard to find--you have to first not assume it doesn't exist I guess. * Disclosure, former 23andMe employee.