8 ms·

So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially un

So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data is shared, or what safeguards exists, the blog post and source "Gizmodo" article is quick to jump gun and spread fear (You are the product / you are being sold!!!). These posts are targeted to derive same emotional response that drive anti-vaxxers / anti-GMO nuts.

electic 10y ago
These blog posts are designed to generate clicks sadly.
biomcgary 10y ago
The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous studies simply due to the large number of individuals involved. The privacy controls are very stringent too.
- bradleyjg 10y ago
  No issue with the fact that it's a convenience sample?
- jonlucc 10y ago
  They've also been offering to pharma companies the ability to help find cohorts of patients to make clinical trials much cheaper. Say we have a drug we think works in a sliver of patients with muscular dystroph; we can either go screen tons of diagnosed patients to find the cohort we think will respond, or we can go ask 23andMe to send some patients with the required genetic profile our way.
- dogma1138 10y ago
  Actually from everyone I talked too, 23andMe is pretty useless since they do very shallow sequencing, the amount of actual correlation is fairly low, and false positives and false negatives is actually quite high.
  - jghn 10y ago
    They don't do sequencing at all. What they're doing is using DNA SNP chips which will identify your genotype in the several million positions that tend to vary from person to person.
  - biomcgary 10y ago
    Although the variant data is sparse, the utility of the data depends on the study design and what is being studied. In the one case that I am familiar with, the data turns out to be very powerful, but there are some things about the study that may be unique.
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.
nisa 10y ago
I don't feel particularly happy seeing a private profit oriented corporation having the DNA data and the results of analysis for millions of people and establishing a market dealing with this data. In the end it's your life, your defects that could be on sale and determine your worth in a capitalist society. This is scary because you fate is determined by your birth and some algorithmus that may or may not be correct and some statistical chance that you suffer of certain diseases. From a capitalistic "I want to minimize costs and maximize profit" perspective it's a perfect fit but the results on society are scary. On the other hand there are clear benefits to have the possibility to prevent the harm caused by diseases or to adjust your life on informed data about possible risks. However if you life insurance can buy that data from 23andme or your employer you are fucked and all the talk of equality before the law is moot because some DNA data from you prevents you from closing contracts due to "risk mitigation". I don't know why anyone would belittle criticism in this direction - it's something that needs to be debated. I thought about using 23andme but this problems stopped me from doing so. This shouldn't be a for profit but these are the times.
- Retric 10y ago
  ADA already 'prevents' job based discrimination based on DNA.* https://www.ada.gov/ https://www.ada.gov/ An employer buying DNA on potential job candidates is opening themselves up to a world of litigation for little real gain. Similarly, health insurance may no longer discriminate based on prior health conditions due to the dreaded 'Obama Care'. We can debate if that's enough, or if these things should be rolled back. However, at a practical level it's currently a non issue. PS: While most of this is not a significant disability. If people treat DNA condition X as an issue then it fall under "or a person who is perceived by others as having such an impairment. "
  - OberstKrueger 10y ago
    Laws can change. Health insurance can't discriminate now, but what happens if Obamacare was repealed, or if the ADA was amended?
    - 10y ago
legulere 10y ago
It's more about 23andMe advertising that by being a paying customer you will advance science, when what they're doing is selling your data to pharma companies.
- voodoomagicman 10y ago
  I'm a 23andme customer and the aggregate data being used like this is exactly what I expected and is a big part of the reason I signed up. There is a lot I don't love about Pharma companies, but when they use this data to develop or better target drugs, they are advancing science.
  - legulere 10y ago
    Wouldn't you prefer if 23andMe to offer the data to all scientists and not only pharma companies paying millions?
    - kalefranz 10y ago
      > Wouldn't you prefer if 23andMe to offer the data to all scientists and not only pharma companies paying millions? Why do you assume 23andMe doesn't? https://mediacenter.23andme.com/academic-research-collaborations-program/ https://mediacenter.23andme.com/academic-research-collaborat... "The 23andMe Academic Research Collaboration Program allows academic researchers to access de-identified, aggregated data from the 23andMe database."
coldtea 10y ago
>while as soon as any new data that can potentially unlock new drug targets Unlock new drug targets is a low bar. Unlock new affordable and publicly available, patent unencumbered drug targets is what we want.
colordrops 10y ago
I'll keep mentioning it every time I see it, at risk of sounding like a broken record, but why do these types of comments labeling people as "nut jobs" always float to the top of HN posts? Look through all the comments here. There are plenty of reasonable arguments one way or the other for the sharing data. It's not a done deal with everyone on one side of the debate automatically being nut jobs.
deleted 10y ago
[deleted]
iwontreddit 10y ago
Or people don't like their DNA being used for something beyond what they paid for? After all, the customers paid 23andme for a service.
- astrange 10y ago
  Then they can not opt-in to research. But continuing personalized results are also what you pay them (or Promethease) for. http://i.imgur.com/kh3bOi8.jpg http://i.imgur.com/kh3bOi8.jpg
hwhatwhatwhat 10y ago
> spread of Fear, Uncertainty and Doubt I agree with your comment but, what's with the capitalization of these words?
- aub3bhat 10y ago
  Its typically abbreviated as FUD. https://en.m.wikipedia.org/wiki/Fear,_uncertainty_and_doubt https://en.m.wikipedia.org/wiki/Fear,_uncertainty_and_doubt
bjourne 10y ago
Nope. I voluntarily ticked the box on 23andme when it asked me if I was ok to have my dna shared with research institutions to help improve science. But SHARING is not SELLING. I'm NOT ok with them selling it because I think that is unethical of them to charge for something I thought they would give away freely.
__a__ 10y ago
"Fear, Uncertainty and Doubt" About what? Privacy? The blog entry is focused on monetization, not privacy. 23 also has a deal with Pfizer. And they have hired people, e.g., from Genentech, that will help them try some drug discovery research themselves. But does anyone outside the company seriously believe this is going to lead to anything? They are not a therapeutics company. They are a data broker. Why not just submit DNA samples directly to a drug company instead of a data broker? The only thing we can call "shoddy" here is 23andme's original business model: selling genetic test results. The question some are asking is whether they knew that when they started. With the collected data, they now have value. There will be buyers. Whether that value is ever passed on to patients is less certain.

electic 10y ago

These blog posts are designed to generate clicks sadly.

biomcgary 10y ago

The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous studies simply due to the large number of individuals involved. The privacy controls are very stringent too.

bradleyjg 10y ago
No issue with the fact that it's a convenience sample?
jonlucc 10y ago
They've also been offering to pharma companies the ability to help find cohorts of patients to make clinical trials much cheaper. Say we have a drug we think works in a sliver of patients with muscular dystroph; we can either go screen tons of diagnosed patients to find the cohort we think will respond, or we can go ask 23andMe to send some patients with the required genetic profile our way.
dogma1138 10y ago
Actually from everyone I talked too, 23andMe is pretty useless since they do very shallow sequencing, the amount of actual correlation is fairly low, and false positives and false negatives is actually quite high.
- jghn 10y ago
  They don't do sequencing at all. What they're doing is using DNA SNP chips which will identify your genotype in the several million positions that tend to vary from person to person.
- biomcgary 10y ago
  Although the variant data is sparse, the utility of the data depends on the study design and what is being studied. In the one case that I am familiar with, the data turns out to be very powerful, but there are some things about the study that may be unique.

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.

nisa 10y ago

I don't feel particularly happy seeing a private profit oriented corporation having the DNA data and the results of analysis for millions of people and establishing a market dealing with this data. In the end it's your life, your defects that could be on sale and determine your worth in a capitalist society. This is scary because you fate is determined by your birth and some algorithmus that may or may not be correct and some statistical chance that you suffer of certain diseases. From a capitalistic "I want to minimize costs and maximize profit" perspective it's a perfect fit but the results on society are scary. On the other hand there are clear benefits to have the possibility to prevent the harm caused by diseases or to adjust your life on informed data about possible risks. However if you life insurance can buy that data from 23andme or your employer you are fucked and all the talk of equality before the law is moot because some DNA data from you prevents you from closing contracts due to "risk mitigation". I don't know why anyone would belittle criticism in this direction - it's something that needs to be debated. I thought about using 23andme but this problems stopped me from doing so. This shouldn't be a for profit but these are the times.

Retric 10y ago
ADA already 'prevents' job based discrimination based on DNA.* https://www.ada.gov/ https://www.ada.gov/ An employer buying DNA on potential job candidates is opening themselves up to a world of litigation for little real gain. Similarly, health insurance may no longer discriminate based on prior health conditions due to the dreaded 'Obama Care'. We can debate if that's enough, or if these things should be rolled back. However, at a practical level it's currently a non issue. PS: While most of this is not a significant disability. If people treat DNA condition X as an issue then it fall under "or a person who is perceived by others as having such an impairment. "
- OberstKrueger 10y ago
  Laws can change. Health insurance can't discriminate now, but what happens if Obamacare was repealed, or if the ADA was amended?
  - 10y ago

legulere 10y ago

It's more about 23andMe advertising that by being a paying customer you will advance science, when what they're doing is selling your data to pharma companies.

voodoomagicman 10y ago
I'm a 23andme customer and the aggregate data being used like this is exactly what I expected and is a big part of the reason I signed up. There is a lot I don't love about Pharma companies, but when they use this data to develop or better target drugs, they are advancing science.
- legulere 10y ago
  Wouldn't you prefer if 23andMe to offer the data to all scientists and not only pharma companies paying millions?
  - kalefranz 10y ago
    > Wouldn't you prefer if 23andMe to offer the data to all scientists and not only pharma companies paying millions? Why do you assume 23andMe doesn't? https://mediacenter.23andme.com/academic-research-collaborations-program/ https://mediacenter.23andme.com/academic-research-collaborat... "The 23andMe Academic Research Collaboration Program allows academic researchers to access de-identified, aggregated data from the 23andMe database."

coldtea 10y ago

>while as soon as any new data that can potentially unlock new drug targets Unlock new drug targets is a low bar. Unlock new affordable and publicly available, patent unencumbered drug targets is what we want.

colordrops 10y ago

I'll keep mentioning it every time I see it, at risk of sounding like a broken record, but why do these types of comments labeling people as "nut jobs" always float to the top of HN posts? Look through all the comments here. There are plenty of reasonable arguments one way or the other for the sharing data. It's not a done deal with everyone on one side of the debate automatically being nut jobs.

deleted 10y ago

[deleted]

iwontreddit 10y ago

Or people don't like their DNA being used for something beyond what they paid for? After all, the customers paid 23andme for a service.

astrange 10y ago
Then they can not opt-in to research. But continuing personalized results are also what you pay them (or Promethease) for. http://i.imgur.com/kh3bOi8.jpg http://i.imgur.com/kh3bOi8.jpg

hwhatwhatwhat 10y ago

> spread of Fear, Uncertainty and Doubt I agree with your comment but, what's with the capitalization of these words?

aub3bhat 10y ago
Its typically abbreviated as FUD. https://en.m.wikipedia.org/wiki/Fear,_uncertainty_and_doubt https://en.m.wikipedia.org/wiki/Fear,_uncertainty_and_doubt

bjourne 10y ago

Nope. I voluntarily ticked the box on 23andme when it asked me if I was ok to have my dna shared with research institutions to help improve science. But SHARING is not SELLING. I'm NOT ok with them selling it because I think that is unethical of them to charge for something I thought they would give away freely.

__a__ 10y ago

"Fear, Uncertainty and Doubt" About what? Privacy? The blog entry is focused on monetization, not privacy. 23 also has a deal with Pfizer. And they have hired people, e.g., from Genentech, that will help them try some drug discovery research themselves. But does anyone outside the company seriously believe this is going to lead to anything? They are not a therapeutics company. They are a data broker. Why not just submit DNA samples directly to a drug company instead of a data broker? The only thing we can call "shoddy" here is 23andme's original business model: selling genetic test results. The question some are asking is whether they knew that when they started. With the collected data, they now have value. There will be buyers. Whether that value is ever passed on to patients is less certain.