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

climateerinvest.blogspot.com

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

#11

Post by [deleted] »

toomuchtodo wrote: post #7
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…

My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.

[deleted]

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

#12

Post by Fishman343 »

toomuchtodo wrote: post #7
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…

My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.

I do appreciate that there is a lot of public good being done with the information, my comment came off more doom-and-gloomy than I had hoped. It just seems a bit risky to me, its the sort of thing that can't really be anonymous and that gets my hackles up so to speak.

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

#13

Post by dominotw »

I have had 23andme for last 7-8 years; I've also paid for all their upgrades over the ye.ars

I've not gotten a single useful information out of it and I don't hope to in near future. It got a bunch of useless information like ear wax type, hair color ect right but overall its waste of time and money.

Privacy concerns over ppl exploiting raw data are overblown given its impossible to draw any useful conclusions from just raw data.

You can find bunch of raw 23andme exports on github.

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

#15

Post by stevecalifornia »

The pros of using 23andMe has vastly outweighed any cons, real or hypothetical.

Here is a pro: I was able to print out a 3 page report to give to my new doctor that described what medications I had a low / high tolerance for and what medical conditions to look out for as I grow older. My doctor was floored-- and as a result we do a few extra tests every year to keep track of a potential eye condition I am at a higher risk for.

So what is the potential cons? Perhaps my DNA data is used to help make drugs to help other people? Even if it's wasn't aggregated and my data wasn't anonymous I'm still unsure what I am supposed to be afraid of.

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

#16

Post by dekhn »

toomuchtodo wrote: post #7
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…

My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.

Me too! https://my.pgp-hms.org/profile/hu80855C

let me know if you find anything interesting. When I had it sequenced, the genetic counsellors said I had none of the common disease risk factors, which seemed a bit surprising.

I have a background in biology, have done extensive work with genomic data, and weighed the future risks pretty carefully. Ultimately I didn't see any real problem with posting my raw BAM files and I assume a dedicated person could identify me if they tried.

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

#17

Post by criddell »

j2kun wrote: post #8

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

It's kind of funny that the blogger puts "those who speak do not know" at the top of one of his articles where he apparently has quite a bit to say.

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

#18

Post by dd9990 »

eli wrote: post #5

What wrong with using aggregate dna data to help target cures for Parkinson's?

Even with the best of intentions things can go wrong and there are lots of unanswered questions in this emerging field. I'm sure the medical organizations involved are very aware of these problems, like protecting the privacy of those in the datasets. We've seen medical data de-anonymised in the past - it's not a trivial problem to solve. Likewise there are moral issues. What happens if you discover X% of people in the study have an extremely high risk of developing Parkinson's? Do you contact them? Do they have the right to know? Do you have the right to tell them? Would they even want to know? These are questions we're only starting to think about now.

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

#19

Post by gwern »

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 them selling my genetic data; because I expected them to be participating in research. Instead, what we get is occasional cutesy stuff, occasional contribution of a cohort to other researchers, and a few papers a year on not particularly interesting topics like coffee consumption (some hits, naturally, since everything is heritable, but not an important topic). Contrast this to the UK Biobank which has been - with a fraction of the 23andMe sample size - releasing blockbuster paper after blockbuster paper over the past year alone!

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

#20

Post by electic »

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…

These blog posts are designed to generate clicks sadly.
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