23and(not)me

I don't consider myself any kind of great thinker or futurist.  I'm not particularly well read or educated.  I'm confused and saddened that we are just now starting to have a public conversation about the data companies like Google and Facebook have. It's been on my mind for a long time and my poor wife will testify to that.

So, DNA, genetic testing etc.  This is another long long overdue conversation.  I'm hearing on a weekly basis about friends and family using this service.

The short version - do not send your DNA in for testing by 23andMe or any similar service.  You have no idea how your data will be used for profit, against you, to deny you future services (healthcare) etc etc.  Any assurances given of data security are meaningless and "contracts" between you and the provider will be immediately voided once they sell their data trove to the highest bidder. And they will.

I'm baffled by people willing to trade access to their most fundamental data so they can find out that they are 2% Mongolian.

I'm seeing zero conversation about this in the public space, it doesn't even come up much on the fringes. 

OK, it had been a while since I looked at their privacy agreement.  Now, in further acts of self deprecation I will tell you that I'm no lawyer but…

After several "watertight" assurances that your data will never be shared etc here - https://www.23andme.com/about/privacy/ they drop in this beauty

"Information we share with commonly owned entities. We may share some or all of your information with other companies under common ownership or control of 23andMe, which may include our subsidiaries, our corporate parent, or any other subsidiaries owned by our corporate parent in order to provide you better service and improve user experience. We may provide additional notice and ask for your consent if we wish to share your information with our commonly owned entities in a materially different way than discussed in this Privacy Statement."

As I read it in order to do anything they like with your data, and to be free from any and  all commitments made in the privacy agreement all 23andme have to do is set up another company in parallel and share user data with it.

And just one more thought, another parallel to the Facebook / personal data conversation happening now.

It's becoming apparent that opting out is not enough because those who opt in allow Facebook to access data about you.  The same is true of 23andme and the like, only to a much scarier degree.  If my parents are nieve enough to believe the assurances given and are drawn in by the marketing they basically hand 23andme the keys to my DNA, even if I have "opted out". 

So a very simple scenario
- My parents use 23andme, submit their DNA
- 23andme sets up parallel entity or is purchased by another company, let's call it HateCorp.
- HateCorp mines my parents DNA for markers
- HateCorp uses that data to predict predispositions to certain genetic conditions for me and my siblings
- HateCorp sells this valuable data to health insurers who can deny me coverage or raise prices

The data mined is sold to the Government and used in criminal justice, sold to advertisers, sold to potential employers….

Makes Facebook look like child's play IMO.

We need new data sharing laws. The basic premise should be the dat you supply is yours and your s alone.  The provider can use it only to provide the service and they cannot share it with anyone else without your permission

Cheers

Ian

Agreed. They should be required to destroy the samples. Otherwise, you just don't know how it could be used against you in the future. Giving insurers clairvoyance is just one such example. What happens to the samples if the company goes bankrupt and is sold? And even if you do not request DNA analysis, they will have a very good idea of what your genetic composition is if they know you are related to people that they have samples for.

The business model of ancestry, 23andme and similar is not to provide a service to customers but rather to collect valuable intellectual property for bio-engineering decades later. It's all about the database of samples. Destroy the samples!

Anything for profit...

ruffrecords said:

We need new data sharing laws. The basic premise should be the dat you supply is yours and your s alone.  The provider can use it only to provide the service and they cannot share it with anyone else without your permission

Cheers

Ian

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You guys are way ahead in Europe and I miss that living here in the U.S. (Brexit aside Ian).

Yes, EU bureaucracy and regulation slows growth.  It's worth that cost IMO.

Slashing regulation is to enable profit at the cost of everything else is reckless.  Sure, rising tides and all that but the long term price will be paid by those who boats rose just a little, if at all.

We don't just want to build apartment blocks quickly, we want to build them safely too.  We need to look at business the same way. Capitalism only motivates the speed and profit agenda, government is a necessary force for the other longterm agendas - wellbeing, safety, environment, personal security.

ruairioflaherty said:

You guys are way ahead in Europe and I miss that living here in the U.S. (Brexit aside Ian).

Yes, EU bureaucracy and regulation slows growth.  It's worth that cost IMO.

Slashing regulation is to enable profit at the cost of everything else is reckless.  Sure, rising tides and all that but the long term price will be paid by those who boats rose just a little, if at all.

We don't just want to build apartment blocks quickly, we want to build them safely too.  We need to look at business the same way. Capitalism only motivates the speed and profit agenda, government is a necessary force for the other longterm agendas - wellbeing, safety, environment, personal security.

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And we probably need laws to enforce the honesty of politicians too. For example we should not allow any politician voting for any measure that benefits a specific company or group of companies, to subsequently, after leaving office, to receive benefit directly or indirectly from any of those companies.

Cheers

Ian

ww need laws policing the politicians here  as well.
if it were up to me, term limits and stipulations that you can only leave office with  up to X  amount of money.  I think it would really cut down  on a lot of the corruption going on.

ruairioflaherty said:

You guys are way ahead in Europe and I miss that living here in the U.S. (Brexit aside Ian).

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obvious answer for that

Yes, EU bureaucracy and regulation slows growth.  It's worth that cost IMO.

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Bureaucracy just wastes wealth with no benefit. Regulation has some value but too much or too little is not good.

Slashing regulation is to enable profit at the cost of everything else is reckless.

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and not suggested... slashing excessive regulations that don't provide commensurate benefit is productive.

Sure, rising tides and all that but the long term price will be paid by those who boats rose just a little, if at all.

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Not very optimistic

We don't just want to build apartment blocks quickly, we want to build them safely too.  We need to look at business the same way. Capitalism only motivates the speed and profit agenda,

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indeed unfettered capitalism is dangerous, some regulation is needed. But crony capitalism where the regulation is coopted by big business is bad.

government is a necessary force for the other longterm agendas - wellbeing, safety, environment, personal security.

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The federal government is responsible for national security not personal security which is more the responsibility of local government.

The constitution is pretty specific about what the federal government can and should do.

JR

pucho812 said:

ww need laws policing the politicians here  as well.
if it were up to me, term limits and stipulations that you can only leave office with  up to X  amount of money.  I think it would really cut down  on a lot of the corruption going on.

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There is a hypothetical 28th amendment

28th said:

"Congress shall make no law that applies to the citizens of the United States that does not apply equally to the Senators and Representatives; and, Congress shall make no law that applies to the Senators and Representatives that does not apply equally to the citizens of the United States".

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This is half joking, but there are serious proposals covering term limits, budget debt limits (percent of GDP), etc. Amendments are really hard so I am not optimistic. In the House there are term limits for committee chairmanships and many retire when they lose their committee chairmanship (better than nothing).

JR

PS: My personal pet peeve is that federal government can send us to jail if we lie to them, but they routinely lie to us. 

JohnRoberts said:

obvious answer for thatBureaucracy just wastes wealth with no benefit. Regulation has some value but too much or too little is not good. and not suggested... slashing excessive regulations that don't provide commensurate benefit is productive.Not very optimisticindeed unfettered capitalism is dangerous, some regulation is needed. But crony capitalism where the regulation is coopted by big business is bad. The federal government is responsible for national security not personal security which is more the responsibility of local government.

The constitution is pretty specific about what the federal government can and should do.

JR

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All good points John and I take the blame for derailing my own thread.

Why not move back to Europe?  I love it here in Los Angeles.  It is the right place for me, my American wife and my American kids.  I don't criticize the U.S. for fun, I'm doing my part to make it better and will do more when I am a citizen.

I'd love to get this thread back on topic, again my fault.

The US is crony capitalism run amok. Unfortunately not much will change unless we elect better politicians.

For privacy everything should be opt in by default,  no sharing without express permission.  Right now it's the reverse,  companies purposefully makes it very tedious and complicated to opt out of sharing data.

john12ax7 said:

The US is crony capitalism run amok. Unfortunately not much will change unless we elect better politicians.

For privacy everything should be opt in by default,  no sharing without express permission.  Right now it's the reverse,  companies purposefully makes it very tedious and complicated to opt out of sharing data.

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I am certain a lot of the sharing data is covered in terms of service.  the fine print most usually do not read.

ruairioflaherty said:

- HateCorp sells this valuable data to health insurers who can deny me coverage or raise prices

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Agreed with a lot of your points, but your punchline is wrong for the USA.

The Affordable Care Act  (obamacare) said health insurers could only deny or raise prices based ONLY on four factors, like age, smoking status, etc
By saying explicitly what could be considered the law eliminated the ability for evil profit driven companies to find loopholes, like using genetic data.  Before the ACA people were regularly denied or priced out of plans due to pre-existing conditions - and without that regulation, I wouldn't be surprised to see insurers today forcing people to submit a DNA sample with a insurance application.  Of course that would be fine to a free market, anti-regulation Republican. More profits for health care stocks.  Sorry to make this political, but it is primarily a political issue - the free market does not regulate itself, it has no moral compass, only a desire for more and more profit.

I think gov regulation for individual's privacy is long overdue. Hopefully we will get rid of the incompetent buffons in office and get some decent legislation on it.

Another side of this to consider is good uses of science like this.
A person discovers they have a higher probablility of some type of cancer so  goes in for early tests / detection.
Many types of cancer are much easier (and cheaper) to treat when caught early.
I think it was Angelina Jolie that had elective preventative surgery due to high cancer risk (not saying that was a wise decision, but the potential is there).
I've heard the CDC tracks flu outbreaks from google searches.

The exploitation of data is not due to an inherent evil in the science/technology, it is due to the exploitation of the masses by the wealthy and powerful. It is a problem of politics and economics.
Like robots and automation displacing workers, this technology SHOULD increase the quality of life for everyone. Instead it is being used to transfer more and more wealth to the already megarich.

During Zuckerburg's testimony I read the increase in the value of FB stock increased his net worth a few billion.
The part I  liked was when a Senator asked him to share what hotel he stayed in the night before and who he had messaged over the last week. "uh no, I don't want to share that" A$$hole. 

dmp said:

Agreed with a lot of your points, but your punchline is wrong for the USA.

The Affordable Care Act  (obamacare) said health insurers could only deny or raise prices based ONLY on four factors, like age, smoking status, etc

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It's just as well that no one is working to repeal ACA, right?

I think, (and maybe I read this thread to fast and the info is hidden somewhere) one of the other issues that 23andme (and ilk) creates is the law enforcement issues related to your DNA...from what I have surmised (just a cursory exam) some of this falls into realms where your DNA can be subpoenaed (like your phone records) if some law enforcement agency so desires...its part of the reason I still appreciate Apples stance towards user data and creating backdoors in their iOS systems on the iphone...from my understanding in some states once you hand over your sample to 23nme a law enforcement agency can demand it because its sort of in the public arena now...I could be wrong...but while I totally support law enforcement (My daughter is a District Attorney in California) I do not feel the need to give the government or law enforcement carte blanche power to use any and all information...

The right to be free from "unreasonable search and seizure" is already becoming thin with the militarization of law enforcement...

iomegaman said:

I think, (and maybe I read this thread to fast and the info is hidden somewhere) one of the other issues that 23andme (and ilk) creates is the law enforcement issues related to your DNA...from what I have surmised (just a cursory exam) some of this falls into realms where your DNA can be subpoenaed (like your phone records) if some law enforcement agency so desires...its part of the reason I still appreciate Apples stance towards user data and creating backdoors in their iOS systems on the iphone...from my understanding in some states once you hand over your sample to 23nme a law enforcement agency can demand it because its sort of in the public arena now...I could be wrong...but while I totally support law enforcement (My daughter is a District Attorney in California) I do not feel the need to give the government or law enforcement carte blanche power to use any and all information...

The right to be free from "unreasonable search and seizure" is already becoming thin with the militarization of law enforcement...

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A number of people have been released from prison after dna testing proved them innocent.

All technology has pros and cons.

JR

Preemptive incarceration based on genetic predisposition for crime anyone?