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.

See https://news.ycombinator.com/reply?id=21815295&goto=item%3Fi...

Here's the 23&Me Research Consent doc that you agree to: https://www.23andme.com/about/consent/

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.

Your use of their program is consent, they tell you when you get the kit.

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."

Ah I see there’s the opt in. In that case Microsoft telemetry is opt in too. You bought into Windows and agreed with the EULA after all.

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).

[1] https://en.wikipedia.org/wiki/Opt-in_email

Please tell me what "creative version of opt-in" you see in this: https://www.23andme.com/about/consent/

---

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 [email protected]). 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.

I don't know anything about it, but:

> 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?

Looking as you cannot completely disable telemetry in windows 10 i fail to see how it is opt-in, or even opt-out. It is always on.

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]).

> Microsoft had to make it GDPR compliant.

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 believe that's his point

Consent is not freely given if it's a requirement for something else.

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.

Looks like every end user agreement is bs by that metric too

That is a legitimate argument people make and also a reason companies don't want to test their EULA's in court

Yes, they are. And GDPR at least seems to rather explicitly agree with that sentiment. Consent buried in a document isn't real consent.

Yeah, and you cannot 'bundle' consent.

Trade, no, interacting with others in general; ruled nonconsensual. You read it here first folks!

This idea would really upend contract law if applied there!

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.

That is how consent should work, if I don't consent I should not buy your apple. Buying your apple is optional, I'm not required to buy your apple.

Opt-in is when I buy your apple.

Opt-out is when I don't buy your apple.

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.

If you want to buy just apples then you should buy it from other seller who just sells apples.

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.

That should be up to us (not government) to decide if such is allowed or not.

>What we were discussing is that the consent is optional

Yes the consent is optional, in the sense you are allowed to opt-out by not buying the apple or buying it from someone else or produce it yourself.

> That should be up to us (not government) to decide if such is allowed or not.

It is up to us to elect those who represent us in our governments.

Sure, I will elect those who allow consent as I describe.

All in the name of "liberty" for businesses, so they can vulture on the weak (the consumer). Land of the free, indeed.

Its a mutually beneficial transaction between the business and the customer.

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.

> That is not how consent works.

Yes, it is. I tell you all the terms of the deal in advance, and you choose to accept it or not. If you don't want my apples, go to the next guy.

I do want your apples, I don't want you to sell my personal information.

This has been claimed multiple times and it's totally untrue.

GSK is not a "parent company". It is a minor investor. This also doesn't give them some ability to demand access.

Who are 23andMe's parent companies (https://en.wikipedia.org/wiki/Parent_company)?

> 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.

HINTS: GSK (UK based) is not one of them.

https://www.gsk.com/media/5349/annual-report-2018.pdf

> 23andMe in which the Group holds 14.5%.

>They explictly tell you that they'd like to use your data for research

Is there not a difference between using your data for research...and selling it to a pharmaceutical company attempting to develop a commercial drug?

Seems there was a misrepresentation in giving up their DNA, and those people should have rights to any drugs developed as a result.

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).

0. https://www.drugcostfacts.org/public-vs-private-drug-funding

That's a pharma trade-org PR site. To be fair, I doubt they're directly lying about anything.

But why talk about executive pay and not marketing? Research clearly takes a backseat to marketing at these shops:

https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-p...

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."

https://www.pnas.org/content/115/10/2329

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?

not really : https://www.statnews.com/2019/12/10/large-pharma-companies-p...

>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?

crmrc114 shares almost all of their DNA with their parents, children, siblings and cousins, in addition to the mentioned grandparents.

I'll bet you a dollar that neither crmrc114 nor 23&me asked /all/ the stakeholders in this particular transaction for consent.