Sounds like you would give consent if asked, and I applaud you for that. Myself I gladly donate blood for free to help others. I don’t however feel that either of those willful good deeds should be viewed as arguments supporting that people should have their blood extracted or data sold without consent.
This is false. 23andMe shares data with invested parent organisations regardless of consent, and is not required to disclose the fact because they're legally not 3rd parties.
Is there something specifically missing from that? it seems like you're suggesting they are doing somethign which is not covered here, or they're trying to be "sneaky", but I don't think that's the case. They have always made it fairly clear what the long game is, and "collect genetic information and share it with legitimate researchers to enable drug discovery" was a major part of it.
I see a lot of folks suggesting 23&Me is being sneaky, or underhanded, or going out of its way to cloak these sorts of exchanges. I do not agree with those interpretations.
Note: I am generally sympathetic to the idea of widely sharing genomic information and believe that good consent forms are transparent. This form is closer to what I'd like to see from a wider range of less ethical organizations.
This looks pretty good to me. First, it appears to be opt-in:
> Giving consent by checking the appropriate box below means that you agree to let 23andMe researchers use your Genetic & Self-Reported Information for 23andMe Research, as described above.
And they have a reasonable policy if you decide you want to opt out:
> At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page. ...
Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
There's a pretty significant difference between "when you use their service you can opt-in to have your data added to the dataset" and "buried in the EULA is a clause saying they own your genes."
It appears some people in this thread use a rather creative version of "opt in" [1]. There is nothing "opt" about what has been described here, nor about Microsoft telemetry (it was opt-out last time I checked).
6. Do I have any alternatives? Can I withdraw from this study?
Your alternative is not to participate in the 23andMe Research study. If you choose not to give consent for 23andMe Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement. If you do give consent to participate in this study, you may choose not to take 23andMe Research surveys or use other 23andMe Research features.
At any time, you may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research. Your consent status is located in the 23andMe "Settings" page (if you experience problems changing your consent status, write to the Human Protections Administrator at hpa@23andme.com). If you withdraw all or some of your Genetic & Self-Reported Information, 23andMe will prevent that information from being used in new 23andMe Research initiated after 30 days from receipt of your request (it may take up to 30 days to withdraw your information after you withdraw your consent). Any research on your data that has been performed or published prior to this date will not be reversed, undone, or withdrawn.
Choosing not to give consent or withdrawing from 23andMe Research will not affect your access to your Genetic Information or to the Personal Genome Service.
You may also discontinue participation by closing your Personal Genome Service account, as described in the Terms of Service. Requests for account closure can be made directly within your Account Settings.
> Your alternative is not to participate in the 23andMe Research study. If you choose not to give consent for 23andMe Research, your Genetic & Self-Reported Information may still be used for other purposes, as described in our Privacy Statement
Seems to imply that if you do not give your consent for whatever "23andMe Research" is, then they will still use the data for other purposes. So in other words if you do not opt in they will still use they data. That's not a normal definition of "opt in".
However, I don't know what is in the privacy statement. What are they able to do with the data if you don't opt-in?
I don't use Windows 10, but I from what I understand Microsoft had to make it GDPR compliant. I'm not sure they succeeded entirely with that (last time I checked, the German government did not find it GDPR compliant. Regardless, at the very least it was an improvement [which isn't an excuse]).
Not really. It's more like they have an army of lawyers paid so they can claim GDPR compliance, and delay/suppress or negotiate deals for years (if not decades) anything that comes up to say their not.
That being said, apparently there are already ongoing legal cases around GDPR complaints for MS. No idea how those will end up.
I think a clearer phrasing of that is "Consent is not freely given unless it's explicit". I'm fine with giving consent as long as I'm clear on what that is. General consent for using a service, to me, doesn't include using my data and/or information outside of what's needed to provide that service.
In this case it totally is. Your free to not use 23andMe if you don't consent. I do think, however, it shouldn't be buried in the EULA but communicated clearly.
> Your free to not use 23andMe if you don't consent
That is not how consent works.
If I am selling you an apple, but thereby you give me consent to use its genetics for research, and without that we do not do business, then there is nothing optional about it; no opt-in, no opt-out.
Opt-in is when the flag is disabled by default, and you can enable it if you want to, and use the product regardless of your choice.
Opt-out is when the flag is enabled by default, and you can disable it if you want to, and use the product regardless of your choice.
You're not buying apples, though. You're buying "apples+X". That's a different from "apples". If your seller is upfront about that then I and people who want just an apple can go somewhere else for fruit. Most, though, aren't upfront about it.
That is up to our governments to decide if such is allowed or not. For example, it isn't allowed to sell a gun or drugs with an apple (at least not here in The Netherlands, YMMV).
That you can decide to not go for the entire package is not what we disagree on (apart from above, I suppose).
What we were discussing is that the consent is optional; it is not in any of these examples. It is part of the package deal; then you don't call it opt-in or opt-out, as that allows you to opt-in or opt-out of something which is otherwise not in your direct advantage, but is in the other party's advantage.
Let's say there are two people who are supposed to get a punishment. One is found guilty by a fair trial, the other one is not found guilty by a fair trial.
For some superficial rule, I may only punish the person who has been found guilty by also punishing the person who has not been found guilty.
Can you explain to me how this is fair?
Here is where you and I differ. You find it OK when a party (e.g. business) uses your private data to sell or otherwise use for their benefit. I believe such personal data is ultimately my say. And I believe only informed opt-in (optional, not part of a package deal ie. how GDPR works) is a fair way to deal with such situation.
> In the United Kingdom, it is generally held that an organisation holding a 'controlling stake' in a company (a holding of over 51% of the stock) is in effect the de facto parent company of the firm, having overriding material influence over the held company's operations, even if no formal full takeover has been enacted.
Who do you think does most of the pharmaceutical research? According to some quickly googleable info, private funding for pharmaceuticals is about 5 times that of public NIH research [0]. And before we assume that it all goes into the executive pay, turns out that private pharma in the US reinvests more of its revenues back into research and development than any other industry in the US (according to the same source).
As for who pays for research, you're right that pharma companies now pay for over half of US biomed research, something that's been true for about a decade. I don't know how that "5 times" figure was calculated, but my figures show the government currently finances about 1/3 of biomed research, including almost all basic research.
Of course, pharma benefits from that research, too, and looking only at spends understates the value of those contributions. One recent study found that
"NIH funding contributed to published research associated with every one of the 210 new drugs approved by the Food and Drug Administration from 2010–2016."
What does that have to do with obtaining HIPPA/DNA data the way they did?
What does big pharma reinvesting more of its revenue back into R&D have anything to do with obtaining peoples DNA through any means but directly from the owners of the DNA?
Big Pharma also spends more in lobbying efforts than any other industry...in fact double the next industry (tech)...in fact they spend in lobbying what the #2 and #3 industries (tech and insurance) spend together. Were you aware big pharma lobbying goes towards R&D tax credits for themselves?
>Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug?
No...? Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.
>Precluding companies from coming up with cures for diseases based on researching this data seems to defeat one of the major points of medical research.
Since when is privacy violations a major point of medical research? Did these pharma companies get your DNA through a 3rd party without your knowledge?
They didn’t submit the required information in the required form.
SF wants startups to behave, that doesn’t mean that behaving startups get to ignore the standard procedures or get exceptions from requirements.
Sounds like they made a mistake in their submission, rather than they wanted to ignore something or get an exception.
For such a large city with a huge amount of tax revenue, I would expect the bureaucracy in SF to do a little better with processes like this one. It would have been trivial to review these for required sections in advance or to give companies time to submit corrections. Obviously this isn’t how it works, like you stated “standard bureaucracy”, but I’d love to see certain parts of government move further away from this mentality of being some punishing Old Testament god to serving the community.
> It would have been trivial to review these for required sections in advance
Absolutely. It is trivial! And the company making the submission is expected to do that. Which I think is very reasonable, considering that they know the requirements and make the actual submission in the first place.
It’s silly to want the reviewers to take on an additional burden in the process just because this one company made a dumb mistake which as you say would have been trivial for them to review and catch.
Reviewers are human. If they can’t use their human reasoning skills deal with something trivial like “Heading A3 should be above this paragraph” then frankly society would be much better off without them, and we should just automate them away rather than wasting our tax dollars on them.
I think the reality is much less agenda-based and much more depressing: a lot of bureaucrats couldn’t give two shits about their job and are just there to put in the minimum required effort to get their paycheck, without regard for who they might hurt along the way.
Certainly sounds like what happened here - a bored, lazy bureaucrat scanning the application for a heading and tossing it in the bin when they didn’t find it.
I’d far prefer a bureaucracy where the employees cared, even if it was caring about the “wrong” reasons.
And apparently tons of entities throughout the county just went on with budget increases to the tune of 4.4 million from one year to the next and no one anywhere asked any questions... it seems almost unbelievable that everyone just didn’t notice or noticed without questioning any of the numbers. It might have been caused by a single error but the effects and shortfalls where widespread and significant.
That’s not how funding works. If you believe the product is worth exactly what you pay that’s not funding, that’s buying. Funding is the belief that at some point the ownership will be worth the wait given the investment.
I love jupytext, but i feel like it’s a patch on a problem that should have just been solved. Just change jupyter to work directly in the genereres file format and skip the “pair files” hassle.
adding git tooling for a specific file type seems like a slippery slope, no? (assuming you are saying that git itself should have this tooling built in - if you mean some sort of addon, fair enough but then everyone who uses jupyter & git needs to install that addon)
I am not suggesting that git itself should ship with a bunch of custom merge utilities for specific file types. git ships with a mechanism that allows custom merge drivers. Setting up custom merge drivers might not be ergonomic right now, but it could have some benefits compared to the transformation approach. For example merge conflicts could result in a valid notebook and it could be manually resolved inside the notebook interface, no need to dive into the text file.
Sounds like a bad apology from someone who got caught passing of others work as their own. Yes plagiarism is wrong, and no it’s not the entirety of academia that is wrong because you can’t get by without talent through just copying other people’s work.
Lots of knowledge (I’d say most) was handed out to modern us as a result of what today would be called plagiarists. It’s true, there was no grant system in the European Middle Ages and I guess the smart folk in Baghdad were also not that interested in being original or being seen as inventors/creators.
She’s pragmatic and has to somehow capitalize on her success. And the very reason everyone owns so much crap is because this is the way you can easily do that. Selling cheap shit to the masses. She was never preaching an end to consumerism or actual social change. She just had a cute pitch for a role that could provide her fame so she could get a payday.
No doubt tons of fans of hers will fill their houses with her crap-ware and the irony will be lost on them. But what does it matter? They’ll buy it because they want to express their alignment with her image through their spending. Just like they bought an exercise bike because they wanted to seem fit. And then they threw it out because she told them it was what they should do and they listened and now she’s saying buy tuning forks and they’ll listen.
> and at the time the woman (perhaps plural) didn’t want to really participate.
AFAIK, the sexual interactions where consensual as they occurred. But the two woman withdrew consent after the fact as they learned he hadn’t been wearing a condom (and they discovered he’d been with both of them).
I remember fondly those early days with PHP before it dawned on me how many peculiarities it had. However to be fair these steps came only after you’d managed to set up the server which was non-trivial on its own.
These days I feel like python/flask does it simpler. True you need to define a function and use a decorator, but saves you having to set up the server before getting started on site itself.
