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23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

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Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#51

Post by ig1 »

pdkl95 wrote: post #35
j2kun wrote: post #8

23andme has a very clear privacy policy on their landing page. So what's this all about?

A privacy policy is not informed consent. Nobody would have a problem if they asked first . The tech industry likes to act as if they have a right to use any data they get their hands on for any purpose; why wouldn't you expect a hostile reaction when people see their data being used without their explicit permission? A common response is that nobody would participate with a proper opt-in system. That lack of partici…

IIRC 23andme gives you a very specific "agree for this data to be used for medical research" consent prompt.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#52

Post by trimbo »

Fishman343 wrote: post #4

This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alone having them sell it legally to god knows who... I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government, and thinking to myself about the consequences of this biological data falling into the wrong hand…

> I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government

Actually it was 5.6 million.

https://en.wikipedia.org/wiki/Office_of_Personnel_Management...

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#53

Post by voodoomagicman »

legulere wrote: post #40
aub3bhat wrote: post #6

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…

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.

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.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#54

Post by kbenson »

krisdol wrote: post #34
aub3bhat wrote: post #6

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…

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 excha…

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.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#55

Post by colordrops »

aub3bhat wrote: post #6

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…

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.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#56

Post by jacquesm »

It's fairly obvious by now that 23andme is just a collector of data, not a source of useful research or actual results.

The best bit: you pay to give them your data.

In that sense Google and Facebook are more fair, they give a free service and you pay with your data.

For their customers (the ones who give them samples) 23andme is expensive infotainment, which will worse case lead to a whole pile of un-necessary tests done by a generation of empowered hypochondriacs.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#57

Post by jamiesonbecker »

biomcgary wrote: post #43
krisdol wrote: post #34

Earlier quoted context omitted.

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 excha…

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 a…

> 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.

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#58

Post by ceejayoz »

a13n wrote: post #14

The data is anonymized, who cares? Good for 23andMe. We could learn very important things from that data in aggregate. We need more aggregated data in healthcare.

Anonymized doesn't always cut it.

https://en.wikipedia.org/wiki/AOL_search_data_leak

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#59

Post by [deleted] »

krisdol wrote: post #34
aub3bhat wrote: post #6

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…

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 excha…

[deleted]

Re: 23andMe Is Monetizing Your DNA the Way Facebook Monetizes 'Likes'

#60

Post by bradleyjg »

biomcgary wrote: post #30
aub3bhat wrote: post #6

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…

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…

No issue with the fact that it's a convenience sample?
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