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

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121–130 of 155 posts

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

#121
post #105

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 Health insurance can't discriminate now, but what happens if Obamacare was repealed, or if the ADA was amended?

Obamacare / ACA didn't set that policy, the Genetic Information Nondiscrimination Act of 2008 was passed almost unanimously by Congress and signed into law by George W Bush. It's a very popular, bipartisan policy.

ACA dated back to 1990, GINA acted as clarification in terms of genetic predisposition to developing a disease in the future (potential problems) and specifically excluded life, disability, or long-term care insurance. Which arguably made the situation worse.

Obamacare prevented insurance companies from treating active genetic disorders as preexisting conditions.

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

#122

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.

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.

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

#123

Earlier quoted context omitted.

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…

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.

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.

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

#124

Earlier quoted context omitted.

> Have you ever entered your phone number or member number at a business for a discount? But I can choose not to. "May I have your email for our records?" "Thanks for asking, but you may not." > 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 care…

> Personal liberty absolutely ought to trump considerations here; Not before we actually know what those considerations are. It's prudent to error on the side of caution, but erroring on the side of caution doesn't mean we ignore the issue after that. If there's serious public good that can be brought about, we should investigate that and explore ways it can be achieved acceptably. > one reason I haven't sent a DNA s…

>> > one reason I haven't sent a DNA sample to 23andMe, etc., is because I can't control what happens to my data after that point, and I'm not even sure if I can find out.

https://www.23andme.com/privacy/

Research participation

23andMe offers customers the opportunity to participate in a new way of conducting research (at home and online). Participating in our research is completely voluntary. Customers can choose not to consent to research and doing so will not impact their 23andMe experience.

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

#125
post #34
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…

> I wish the privacy cost was stated in as clear terms at transaction time as the monetary cost

Privacy Center link directly from the home page: https://www.23andme.com/privacy/

Privacy Policy Highlights https://www.23andme.com/about/privacy/

Full Policy https://www.23andme.com/about/privacy/#Full

This information isn't hard to find--you have to first not assume it doesn't exist I guess.

* Disclosure, former 23andMe employee.

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

#126
post #106

Earlier quoted context omitted.

The sarcastic tone of your response suggests that you're expecting me to be an idiot and/or a hypochondriac. I may or may not be a typical 23andme customer (and wasn't suggesting I was), but we had very specific, actionable reasons for using their services: Of course we didn't do a second scan, that would be silly. My wife carries some recessive genes for inherited conditions common among Ashkenazi jews, and because…

>Of course we didn't do a second scan, that would be silly... I don't know half of my ancestry, we simply wanted to confirm that I was negative for them Oh god I hope you are not serious. These services are not clinical diagnostic tests and shouldn't be used as such for a thousand different reasons. Genetic counseling is serious business. It should be administered by a trained professional in a medical setting. The r…

See below. I'm completely serious. The population prevalence of Tay-Sachs is about 0.4%. (I don't look obviously Ashkenazi - quite the opposite - so there's little reason to assume I'm in a high-risk population). Therefore, there's a pretty strong prior that we didn't need to worry about it in the first case. Even assuming that the 23andme results have a horrible false negative rate -- let's say they miss 25% of carriers -- a negative result on a single screen (where we know it was actually my data, as Jacques noted) is enough to drive our per-child risk down to about 1 in 4000.

The false positive risks are small - follow-up genetic testing using a certified lab is easy.

Note that I was creating a deliberately absurdly high number for that false negative rate. The FN rate found, for example, for 23andme's Bloom Syndrome carrier status test is much lower than what I used above. The actual post-test carrier risk when I calculated it was under 1 in 10,000. Perfectly fine for a low-risk situation like ours.

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

#127
post #54

Earlier quoted context omitted.

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 sl…

> Have you ever entered your phone number or member number at a business for a discount? But I can choose not to. "May I have your email for our records?" "Thanks for asking, but you may not." > 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 care…

> If I'm giving them my DNA, I want to know exactly how it can be used, how it will be anonymized, to whom they can sell it, whether I can opt out at some point, etc. ... one reason I haven't sent a DNA sample to 23andMe, etc., is because I can't control what happens to my data after that point, and I'm not even sure if I can find out.

https://www.23andme.com/privacy/#drawer-researchparticipatio...

Customers can opt in or opt out of our research at any time. If you opt out, we will discontinue using your information for research within 30 days.

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

#128
post #38
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 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…

> if you life insurance can buy that data from 23andme or your employer you are fucked

https://www.23andme.com/privacy/#drawer-thirdpartysharing

23andMe will not provide any person's data (genetic or non-genetic) to an insurance company or employer.

We have been long-time supporters of legislative efforts intended to prevent genetic discrimination and to safeguard individuals' genetic privacy. In the US specifically, we were active in the development of the Genetic Information Nondiscrimination Act (GINA) enacted in 2008. GINA is federal legislation that protects Americans from discrimination in health insurance and employment decisions on the basis of genetic information. GINA does not cover life or disability insurance providers.

In addition, we have supported the California Genetic Information Nondiscrimination Act (Senate Bill No. 559), which was enacted in 2011.

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

#130

Earlier quoted context omitted.

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.

Wouldn't you prefer if 23andMe to offer the data to all scientists and not only pharma companies paying millions?

> 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-collaborat...

"The 23andMe Academic Research Collaboration Program allows academic researchers to access de-identified, aggregated data from the 23andMe database."

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