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.
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 careful protection and anonymozation of the data is for the greater good, and worth the risk Imo.
That's fine, and it brings to mind organ donation, but this should be absolutely crystal clear. 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.
Personal liberty absolutely ought to trump considerations here; 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.
The reason I, and I suspect many others, avoid these types of services is the risk of this information being inherited or possessed by an entity that would use this information in ways to which I do would not consent nor approve. This information would not only affect me personally, but also my children.
Germans are more privacy-aware than most for a good reason. I dread a future where an evil government gets a hold of this data and the technology to effectively use it.
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 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.
Yes, and I agree with this outlook. When I said it would be a good thing to legislate, I meant that we should investigate ways we can implement clear rules such that we can all benefit from the useful medical information while protecting privacy as much as possible. We already do this to some degree in the US with HIPAA laws, which facilitates the sharing of client medical information between medical professionals but also comes with a bunch of very specific safeguards and requirements.
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.
> Do you really compare DNA and phone numbers?
I think you've let the prior context of the discussion influence your interpretation of my point. My comment had two two main points. First, that we've never really had a system where transactions did not convey some additional information about us, our preferences, and the market (what's more, "my data" is an interesting and often under-explored topic, IMO. If data wants to be free, and you go spreading it around, do you really have a singular claim to it anymore?). Second, there are competing interests of the individual and society when we are talking about aggregating data that might yield substantial benefits for people in general (as in the human race). We've made considerations about this before, such as with vaccination.
I'm not making a case that a private company should be able to keep all info about your genetic makeup and profit from it privately. I am taking a position that we should carefully consider the possible benefits of aggregating genetic info, the possible downsides in loss of privacy and other possible problems, see if there are ways we can increase the benefits and/or decrease the downsides, and try to make an informed decision, with the minimum FUD possible.
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".
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.
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.
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.
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.
> 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.
That data (your profile) is yours, and yours alone. No one has the right to package it and sell it without your consent. Now, it is possible that you may feel gregarious and offer up your data; but that would be by choice.
That doesn't make any sense.
Causing accidents to increase premiums would be pointless and actually cause them to lose money (premiums are almost never more than the actual cost of an accident).
Think of it this way: You have 5 people who pay $100 a month. After 3 months ($1500 profit), Alice causes an accident that costs $500. The insurance company pays for $400 of that and raises Alice's premium by $25. Now, their profit for those 3 months is $1100, but they're also now making $125 a month. That $400 insurance payout is paid for from Alice, Bob, Charlie, David, and Eve's insurance payments totaling $80/person/(3months).
Raised copays are the reason some people don't submit claims. It's a question of "Do I want to pay $300 now, or an extra $25 a month for 2 or 3 years?"
But to say that their profit model is based around causing accidents or paying as little as possible is a complete lie. Sure, insurance companies can be greedy, but their profit model is making money off people who don't have accidents. Paying lesser amounts is just an added "bonus" they get when accidents happen. It's greedy, but that's not the profit model.
That is kind of the point.
If I'm stricken with a terminal illness, health insurance won't do much for me. Life insurance could mean the difference between my family being OK or really struggling.
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.
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.
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.
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. "
Obamacare prevented insurance companies from treating active genetic disorders as preexisting conditions.
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.
The ideal would be that I can have a friend pay cash in a physical store to get the kit. There is no account. The package includes an ID code that I may look up on the web site to get results, obviously browsing over Tor from borrowed wireless.
Currently, it looks like I'd have to actually buy the equipment myself and sequence my own DNA at home.
Unlock new drug targets is a low bar. Unlock new affordable and publicly available, patent unencumbered drug targets is what we want.
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.
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."
I agree with your comment but, what's with the capitalization of these words?
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.
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.