4 ms·

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 collectio

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.

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.