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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'

#81

Post by moultano »

shawn-butler wrote: post #77
moultano wrote: post #74

Earlier quoted context omitted.

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.

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.

By "practical consequence" I mean "something that has actually happened to you or someone you are aware of," not the worst case scenario of a dystopian vision.

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

#82

Post by ams6110 »

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…

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.

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

#83

Post by jacquesm »

dgacmu wrote: post #66
jacquesm wrote: post #56

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…

I don't see why you're drawing that conclusion. As a customer, I'm happy with what I got: (1) Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :) (2) lower-confidence data for less-substantiated issues (who knew…

> Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :)

I'm sure you felt the need to get a second scan from a different company to confirm the negative results because this was so incredibly important to you.

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

#84

Post by ams6110 »

TeMPOraL wrote: post #75
OberstKrueger wrote: post #64

Earlier quoted context omitted.

Laws can change. Health insurance can't discriminate now, but what happens if Obamacare was repealed, or if the ADA was amended?

An ugly mess happens. Which is why I think people would be asking themselves those questions before repealing Obamacare / breaking ADA. I think there's a limit to which politicians can pull tricks on people beyond which society's self-preservation instinct kicks in and people vehemently repeal harmful ideas. I doubt you can create a dystopian future with a single vote; it needs to be done very sneakily so that people…

All you need is a big enough crisis to get people to support suspension of the normal checks and balances. That can happen very quickly, in the right circumstances.

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

#85

Post by willsher »

afarrell wrote: post #72
iwontreddit wrote: post #71

Earlier quoted context omitted.

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 abou…

> 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.

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.

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

#86

Post by unimpressive »

moultano wrote: post #81
shawn-butler wrote: post #77

Earlier quoted context omitted.

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.

By "practical consequence" I mean "something that has actually happened to you or someone you are aware of," not the worst case scenario of a dystopian vision.

If you get mysteriously denied a job, insurance, etc, you won't necessarily know. In fact, since you give out so much data about yourself so often, it's likely impossible for you to know who sold you out exactly or that you were sold out at all.

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

#87

Post by gwern »

biomcgary wrote: post #36
gwern wrote: post #19

This is really not surprising. Media coverage of 23andMe all the way back to its founding has said that it was offering SNP testing at-cost to build a big database which can be used for all sorts of things (although they were probably too optimistic about the usefulness of it). The real scandal is how 23andMe has published appallingly little research based on it. When I signed up with 23andMe, I was totally fine with…

I think it may just be taking time for scientists to start working with their pipeline, which is somewhat cumbersome simply due to their privacy controls. I predict we will start seeing more studies soon. See my other comment on this thread for details about one of those studies.

That seems highly unlikely. 23andMe has been in operation since 2006. They hit UK Biobank sample size sometime around 2010. The Biobank researchers have been managing to pump out paper after paper (check out Bioxiv!) over the past half-year even though as far as I can tell, their genetics pipeline only started yielding data back around October 2015. How long are we supposed to wait on 23andMe before concluding that they just aren't making very good use of their data from the perspective of the public interest and have focused on commercialization?

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

#88

Post by hwhatwhatwhat »

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…

> spread of Fear, Uncertainty and Doubt

I agree with your comment but, what's with the capitalization of these words?

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

#89

Post by aub3bhat »

hwhatwhatwhat wrote: post #88
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…

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

Its typically abbreviated as FUD.

https://en.m.wikipedia.org/wiki/Fear,_uncertainty_and_doubt

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

#90

Post by kjenkins »

If you're interested in personal DNA sequencing but don't want your genetic data shared (or you want to be able to analyze your entire genome, not just the small bit 23andMe does), check out Guardiome. This is their entire mission statement as a company.
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