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Comment by jsgo | Hacker News Reader

> Wojcicki has theories

Think the obvious one is that the results are shared and whether someone is a criminal or not (or will be one in the future), people are not particularly comfortable with sharing to parties they didn't initially trust it to for the purposes they trusted it for.

Anecdotally, I bought a 23andme kit (just the genealogy one) but never submitted it because the labeling was to send it to the lab in the next town that manages the company I work for's drug screenings. Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.

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Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it.

You only need these kinds of results once because your DNA doesn't change. I knew people who were giving or had gotten these as gifts, but those are one-off purchases. And if you've heard of people doing it then you'll do it too but that's also a one-off.

I don't think I'd personally benefit because my family came to the US relatively recently from a country that has very few records going back very far, that haven't been destroyed. So what would be the point for me?

That's not quite true. Your DNA doesn't change, but 23andMe only does partial sequences on those test kits. As new techniques become available they can't necessarily retest old samples, so customers who want more complete results in the future will likely have to buy and submit new kits.

I've never seen them push that as a marketing angle.

As a 23andMe customer from a couple years ago, it never even occured to me to try re-running the results.

I expect that this is a difficult thing to market, since most people probably don't realize that the thing they did wasn't a "complete" sequence.

"Remember the thing we sold you before? Well, it wasn't that great. But now it is. Give us more money?"

In bay area, we call it version 2.0, 3.0, 4.0, 2019, 2020.

Who does not want DNA 2020? I do. [NOT in this case]

In Seattle, they call it version 2.0, 10, 2029, Lemur, and Q.

They do, it depends how far back you signed up I guess. I did this many years ago, around the time they first launched and I got constant reminders that this or that new information is not available for me unless I upgrade to their latest chip. I think once I was able to upgrade by having them rerun the first sample I submitted, but at this point I think I’d have to send a new sample in if I remember the message correctly. But that seems like too much hassle so I haven’t done it.

Honestly the most interesting thing in the whole result to me was the "Number of Neanderthal markers" thing.

All in all, probably not hugely worth the expense. But I guess the novelty of it was fun.

>All in all, probably not hugely worth the expense. But I guess the novelty of it was fun.

Yeah, for me it was half novelty and half trying to figure out more about my father's side of the family. My father died just before I turned 13, when his father died about a decade ago I asked my great uncle what he knew about the family... he didn't even know his mother's maiden name which I only discovered at the end of last year, several years after my great uncle also died. I can trace part of my mother's side back with confidence to at least the 17th century, my father's family had gone cold in the early 1900s until I discovered my grandmother's maiden name.

Novelty is also why I want my whole genome done. Once it's down to a few hundred dollars I want to have it done and ultimately have it printed and put in binders, purely for the novelty.

I recently got an email or other notification of some sort offering a discount to get retested with their new V4 chip, as apparently my tests were run on V3.

This is true but unrelated to their current decline in sales since this isn't an option they currently offer.

It is an option they currently offer.

https://you.23andme.com/chip-upgrade/

I stand corrected. (That link doesn't work for me, but the one below does.) I guess I'm a recent enough customer that there's no need for me to upgrade.

https://customercare.23andme.com/hc/en-us/articles/360025014...

New people are being born all the time. There are many industries based around one time purchases. Think appendix removal or weddings (that one may be more than once for some people)

Gifting someone a thing that could be used as a paternity test at a baby shower would be more than a little rude. And presumably if both parents have already done it why would you need to test the baby?

It would be extraordinarily rude . But it's definitely not what the parent comment meant. :)

Mutation is a thing.

"No, no, I wasn't questioning the paternity, you can use the test to check if your baby is a mutant."

Given the popularity of the X-men i think that might improve sales enough to reverse the trend.

But 23andme will always show some differences, while individual SNPs have high accuracy >99% due to the amount that is being tested you will always have some results that are wrong. Multiple testing problem is an issue here.

> And presumably if both parents have already done it why would you need to test the baby?

Before all the privacy concerns, I was considering getting my kids tested, even though my wife and I have both done it.

Mainly so that I could see which genes they picked up from each of us and if they got any new mutations.

Also, a situation that might be somewhat niche -- we had IVF, so it is possible there was a mistake in the clinic and the child wasn't made from us. I read too many stories about IVF clinics where the samples were switched by the employees with their own.

Even more mind blowing, through sheer clerical error, the children that came out of my wife could be mine but not hers!

Given that they look like us we're pretty sure the clinic didn't screw up, and at this point I would keep them regardless, but if I could discover an IVF mistake, the settlement would make for one heck of a college fund.

> at this point I would keep them regardless,

Gee, how magnanimous of you...

Ah, the lucrative appendix removal industry.

Considering the types of cars that surgeons drive, I'd say yes, quite lucrative.

yeah, but what about the appendectomy only doctors, what car do they drive?

It's surgery that pays well, it doesn't mean it's all from a single procedure.

Surgeons often specialise highly. Particularly for complex surgeries. Experience has a huge impact on outcomes.

Not always, possibly not most, but many.

There are 250 000 appendectomies a year in the US, multiplied by 14000 USD => 3.5 billion USD in revenues [1].

[1] https://www.lendingpoint.com/blog/appendectomy-what-it-costs...

No one is earning a living solely doing appendectomies...

Good point. I just have a hard time thinking of a non-elective surgery as an "industry".

Maybe we could make it elective and pump those numbers up to grow the addressable market size to all Americans

https://www.sciencedaily.com/releases/2017/01/170109162333.h...

There are many industries based around one time purchases. That doesn't make them immune to booms and busts.

23AndMe saw tremendous growth, both according to the article and my anecdotal experience, but that doesn't mean that the burst they saw was sustainable. It's looking, at least right now, like it's not.

I did it 6/7 years ago because the novelty, and enthusiastically recommended it to family and friends. Now I regret doing it considering how Google and Facebook has abused consumer data. I definitely would not submit my kids to the same fate.

>I definitely would not submit my kids to the same fate.

You already have since your DNA is out there in a database.

That's not exactly how DNA works. Their kids should be mostly fine (99.99% similar is still night and day)

If the government encounters one of their kid's DNA, that's enough to identify them as a son/daughter of the person with that DNA profile.

If a medical insurance company purchases their DNA, analyzes it, and anticipates that a child of theirs is likely to have medical costs 5x the average, those costs will be passed on to those kids, absent legislation to the contrary.

This applies to everyone you're related to, as well.

> If the government encounters one of their kid's DNA, that's enough to identify them as a son/daughter of the person with that DNA profile.

I don't believe that's ever been tested in court (so there isn't precedence) and the ways in which DNA are complex enough - and the mutation rate is high enough - that it might be like fingerprints... if you're the only person with DNA that might be like the kind found and you've got some serious suspicion around you for other reasons... then they might be able to use it as supporting evidence or to compel you to submit to DNA testing to confirm the match (which apparently does have precedence in the US... wow America)

Joseph DeAngelo was caught because one of his relatives did a 23andMe style test.

Yeah, this isn't science fiction or conspiracy theory anymore. Several high-profile cold cases have gone hot as police have been trawling the datasets submitted to 23AndMe et al and investigating the family trees of persons whose DNA is similar-ish to the samples in unsolved cases. [0]

The results are mainly bupkis anyway, and you're paying for the privilege of having police agencies across the country (world?) give extra scrutiny to you and all of your relations. No thanks.

[0] https://www.washingtonpost.com/news/true-crime/wp/2018/04/27...

It's all tradeoffs, I want some privacy, but I also like crimes being solved. In fact, I'd see that as a benefit even if I'm related to criminals. Of course this assumes it is used correctly and fairly, which is the hard part.

Stunning naivete on display here

How so? They point out the difficulty balancing personal privacy and tools to identify criminals who have evaded justice. Just because you don't agree with the relative importance placed on either side doesn't make them dumb or naive.

What makes you naive is if you put any smidegeon of hope into the fact that insurance companies will not hesitate to buy and abuse such data to fuck you over left, right and central then you really are beyond help.

If you want to risk that, fine. But you're also screwing all your relatives in the same swell process.

And that's not only naive and dumb, that's totally reckless.

The solution to that is to abolish or neuter your insurance companies like the us in the rest of the world did. The fact that a private for-profit company decides if you live or die is absurd.

Last I checked, medical and life insurance is a thing everywhere else in the world as well. While a public healthcare system will pay for your treatment, it will not pay for the loss of earnings/business during your stay in the hospital and convalescence, nor will it pay you if you end up with a permanent disability (social security may cover a pittance of the latter).

That's why I also stuck the word "neuter" in there. It's not difficult to regulate what insurance companies are allowed to consider. Data brokerage can also be regulated (the GDPR would not allow 23andme to sell genetic data to insurance companies without strict opt-in)

the GDPR would not allow 23andme to sell genetic data to insurance companies without strict opt-in

That's true. But there's a different issue and the very reason why I would never do such testing.

An insurance company cannot enforce a genetic test on you in order to write a policy. What they can and will do, however, is ask you in the questionaire for such a policy if you did a genetic test and if yes they would oblige you to share the results before writing a policy.

The problem here is you can't lie. If you did a test and you deny it and it's proven later that you lied the insurance will refuse coverage.

So it's in your best interest not to get tested at all.

My understanding is that it's very different in the US. Such data is insanely valuable to insurers and that directly translates to the prices they're willing to pay for it.

Unethical? Sure as hell. Illegal? Probably not without a strong legal framework.

it will not pay for the loss of earnings/business during your stay in the hospital and convalescence

I can't speak for other countries in Europe. But in Switzerland you have mandatory coverage from your employer.

The employer will pay your salary for a certain amount of time. After that insurance will kick in and pay (usually) 80% for up to a couple of years.

After that invalidity insurance kicks in. That's usually about 60% of your salary until retirement. You can buy added coverage to raise those percentages.

Bankrupcy for medical reasons is pretty much unheard of herearound.

>>The fact that a private for-profit company decides if you live or die is absurd.

Yes it is much better when corupt government bureaucrats do that ::Rolleyes::

I think the level of "corrupt" is up for some debate, but it's pretty inarguable that the US pays substantially more for a system that is objectively worse in many ways.

So your sarcastic comment is actually correct...

the US Healthcare system is second to none in the world.

The actual CARE people in the US get is the best in the world, wealthy people from every nation come here to get their care

It is fucking expensive and has issues with how we go about paying for it largely do to government regulations and interference in the market place

But the actual care... No that is not "objectively worse" to any country anywhere, our health care is the best.

People often confuse care with insurance, our Insurance system sucks largely do to government

>the US Healthcare system is second to none in the world

77th or so maybe to some, but definitely not second to anything, sure.

> The actual CARE people in the US get is the best in the world,

No, it's not consistently. The care a very small fraction get is, perhaps. But even for most of the people who get care it's not.

> It is fucking expensive and has issues with how we go about paying for it largely do to government regulations and interference in the market place

The places that provide equal or better outcomes at far lower prices (both per GDP and per capita) don't have less-regulated markets. So, no, I don't think you've identified the actual problem correctly, though I get that that's always going to be the explanation offered by those dogmatically devoted to the religion of laissez-faire.

I Honestly do hope the US does go Single Payer, we will see health care innovation and advancement stop, no new drugs, no new procedures, etc as almost 100% of that is funded by the very people you despise, the American people.

>The care a very small fraction gets is, perhaps. But even for most of the people who get the care it's not.

that is simply not true, most of the studies, rankings all factor in "access" due to price, if you remove price as a factor then there is no better system in the world

>>The places that provide equal or better outcomes at far lower prices (both per GDP and per capita) don't have less-regulated markets. So, no, I don't think you've identified the actual problem correctly,

I have, we have the worst of both systems. We have all the regulations of a Government-run system without the Price controls.

Single-Payer would be cheaper than our current model, it would also provide worse care.

The free market would be the best but I fear that ship has sailed, the world will need to destroy all innovation and collapse the health systems everywhere before anyone will want to try Free market again

Socialism always fails, the one thing keeping every other nations socialist system working is the American system, we pick up the slack, (just like in defense)

That is one of the reasons I become more and more isolationist every year.

> that is simply not true, most of the studies, rankings all factor in "access" due to price

That's because access due to price affects what care people actually get from the system.

> if you remove price as a factor then there is no better system in the world

No, even if you don't consider how ludicrously expensive the US healthcare system is, the outcomes it produces aren't exceptional.

Now, if you mean if you remove the actual effect price has on care the US system would be great, sure, but that's different than removing separate consideration of price as a factor. And impossible, as well.

This is similar to the typical "encryption is for pedophiles" argument. Privacy doesn't mean that I am a criminal and/or my brother/sister/father/mother/children/cousins are murderers.

I also like ALL crimes to be solved and the guilty ones to get what they should, and the innocent ones to be living a life outside jail.

But we got something called "fundamental rights" (at least imho). One of them is privacy. NOT having an insurance company ripping me off because my father had X-Y-Z disease is another right I would like to have. They are already making billions as is. The ones that don't, should get their s..t straight and stop bleeding money for stupid reasons (yes I know from experience). No need to give them the bullet that will injure me (financially).

I think that all these DNA tests was a fad. Kinda like facebook was. People realize that they get very little value from it, and it most likely come back and kick them in the shin one way or another.

What about when devices come that are sensitive to read people's minds as they walk down the sidewalk ?

Monitoring citizens minds would be a tremendous boost to solving crimes. This rule will be equitably applied to all citizens by a fair and principled government excepting special groups like oppressed minorities or members of the government/military themselves.

I personally feel that privacy and individuality holds much more value than solving crime. I hope society never comes to the point that they'll allow government to do anything to them in order to provide "safety"

Dude, what? The whole reason why DNA is forensically useful at all is that you can use it to pinpoint people.

Court..? AFAIK insurance companies in the US are free to model and quote you as they wish with the information they can legally get

Actually, they are expressly prohibited from using your genetic information to make decisions about your coverage. It's the Genetic Information Nondiscrimination Act (GINA) [1], where:

> ... health insurers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.

However, it doesn't apply to all insurance:

> It does not cover long-term care insurance, life insurance, or disability insurance.

[1] https://www.genome.gov/about-genomics/policy-issues/Genetic-...

This is good, but also leads to the obvious follow up question of how stringently it has and will be enforced. It's also illegal to lose PII and credit info for millions of people but, well, here we are.

Also, parallel construction. Also, data laundering - you drop DNA test data into a business analytics third party, and two data brokers later this arrives at your insurance company as a personal profile "created from data about your shopping habits collected on-line and off-line", or something like this. Don't know for sure if that's actually happening, but I assume it is.

Huh, had no idea, thanks for bringing that up. Obvious follow-up question: Say the insurance company is using a third-party that they buy some kind of individual "healthiness/sickness benchmark" from, that just so happens to be heavily derived from on this genetic information, which the health insurer never sees in raw - would that fall under this? Seems like an easy way to skirt this regulation, but i am obv NAL.

How far removed from genetic data does the data have to be so that insurance companies can use it? Can I start a business that analyzes genetic data for know risk factors and then sell only the risk factors to insurance companies?

A parent/child relationship is crystal clear in the genetic data (barring the case where what you're actually seeing is an aunt or uncle and the child of their identical twin).

And I'm pretty sure paternity tests have a lot of precedent in US courts.

Do you mean chimeralism [0][1]?

[0] https://en.wikipedia.org/wiki/Chimera_(genetics)#Humans

[1] https://abcnews.go.com/m/story?id=2315693

No, I mean that your identical twin's child will appear to be your child under a genetic test, for the obvious reason that you and your identical twin have the same genetics.

Which has not been done in court? I work in juvenile dependency law and we use paternity-by-DNA to establish and disestablish fathers every day. Other divisions of the DOJ use DNA to establish parents for the purposes of childcare payments. There are loads of statutes and case law regarding DNA testing to determine parentage.

Uh, it absolutely has - and with more distant connections than direct parentage. See the recent Golden State Killer case for instance, as well as a myriad of others.

That shows it's enough to establish probable cause, but once they'd identified him, they got a direct DNA match, which means he won't be a test of the ancestral scenario outlined in the GP.

Yeah but it is enough for them to find them, and then retrieve a cup the "suspect" used and threw out in public.

Yeah I keep waiting to hear about insurance companies finally paying off politicians enough to get HIPPA revoked.

Well, yeah, in the sense that a chimp and a human are about 98.5% similar.

But from that point of view, humans are 99.9999% similar.

The other point-of-view is that a male and a female of a species will end up with approximately 50/50 similarity to either parent.

These are different measures coming from different point-of-views. If I were Gengis Khan (and who is to say that I was not!), then I could have impregnated enough women over my days on the steppes, to have, 1000 years late, up to countable percentages of my far-far-far descendents actually detected in tests as being my actual descendents.

Please don't conflate "this dna comparative measure" with "that dna comparative measure". It's all (theoretically) straight forward, and, yes, compounded by empiricism, but these are different measures, regardless.

If they get a sample from the kid, they will be able to say with certainty that the commenter is the parent.

They wouldn't be able to tell the difference between kids of the same gender, but if you only have one kid or a boy and a girl, they would be able to pick out the kid.

That's not how 23andme works, they don't sequence your whole genome, just selected high variance segments.

https://www.cbc.ca/news/world/dna-from-genealogy-site-used-t...

They caught him because a relative had submitted their DNA.

>Investigators compared the DNA collected from a crime scene of the Golden State Killer to online genetic profiles and found a match: a relative of the man police have identified as Joseph James DeAngelo, 72, who was arrested Tuesday at his suburban Sacramento home.

The same sort of scenario is possible for medical related things.

"John Smith has these health risks, oh look he's listed as the father of our client Jane smith so she likely carries these health risks. Adjust her rate/drop her policy".

That said, I willingly gave my DNA to 23andme & Ancestry.com, I find the stuff interesting and worth the potential future risks. Once whole genome falls below a few hundred dollars I plan to have that done too.

Half of it at least

But they don't know which half!

They know if you have a Y chromosome, so they know which half.

They already have 1/2 of your kids DNA.

Sure, but the other half could be Martian or Roman God DNA and they'd never know!

Nah, half is plenty to identify someone. If one of your kids sent in a sample today with a fake name, it would pair you up immediately and identify that they are your children.

IIRC you can request the data to be deleted. You have no way of knowing if it's been done correctly, but at least it's something you could do to prevent your kid's DNA from effectively being there.

This is definitely worth doing.

It won't protect you from nefarious actors with the data right now, but it will potentially protect you from nefarious actors who may someday get ahold of the db.

I seem to remember reading that even when they delete your data, they keep your sample. So really all it does is prevent you from getting it.

This is not correct and in fact is the exact opposite. By default, they destroy the sample after analyzing it.

Not anymore, their new kits retain the sample for additional testing in the future.

Not sure if it has changed, but I was given the choice for them to keep or destroy the sample.

After account closure:

"23andMe and our third party genotyping laboratory will retain your genetic information, date of birth, and sex as required for compliance with applicable legal obligations, including the U.S. Federal Clinical Laboratory Improvement Amendments of 1988 (CLIA), California Business and Professional Code Section 1265, and College of American Pathologists (CAP) accreditation requirements.

23andMe will retain limited information related to your data deletion request, such as your email address and Account Deletion Request Identifier, as necessary to fulfill your request and for the establishment, exercise or defense of legal claims."

So they'll retain your DNA info and personally identifying info that you provided, forever. But the physical sample will be destroyed.

>> date of birth, and sex

That's enough to identify people in some zipcodes.

I'm pretty sure I didn't give them my birthdate. I also didn't give them my full name. If birthdate is required, I would have given a fake one.

I don't see any reason to give them your exact birthdate.

They could obviously dig into the billing data and get my info, but at least it's not right there together.

Most people in most zip codes. 70 years * 365 days * 2 sexes = 51,100. The average zip code has about 10,000. Never thought of this before.

John D Cook did a couple of good blog posts on this

https://www.johndcook.com/blog/2018/12/07/no-funding-for-unw...

https://www.johndcook.com/blog/2018/12/07/simulating-zipcode...

If your kids were born in the United States,the states already has their genetic information. https://www.babysfirsttest.org/newborn-screening/states

The US Government already has my DNA thanks to my military service. I very much hope that they aren't sharing it with private companies though. Despite the government having my DNA I would still never give it to 23 and me.

There are very strict laws on how that DNA can be used. Only to identify remains.

You can also request it be destroyed:

https://www.health.mil/Military-Health-Topics/Research-and-I...

I would be shocked if IAFIS didn't have that stored in South Carolina strip-mall hosted database like all the other biometrics they can get from birth, disease, criminal activity, police, federal and military service. The feds do love their biometric data.

That page doesn't say they store it?

In any case, the government having this data and a private, for profit company having this data feels like two quite different things.

Certainly, they're different. I'm pretty confident about a company's profit motive; not so much with the government which changes every few years. I don't like a company having it (and will never take such a test), but like the government even less. The government's the one that can bust down my door at 3 AM, haul me away, and shoot me if I resist.

A company's direction is going to be aligned with the owners/shareholders goal, which isn't always but in most cases is profit. At least we know that.

Government? Who knows - whatever behavior emerges when you get a bunch of self promotors, egotists and idealists to compete amongst each other for whatever it is that each is individually competing for.

So in other words, with companies we know for sure the data will be abused badly, as much as possible. Governments are a wildcard; today they may actually protect this data and use it mostly responsibly. Tomorrow, they may bust your head for being related to someone or some group they don't like.

Not really, because many companies are owned by decent people who have a personal value system and their companies are reflections of that. Most business owners I've met are good and decent people. It's actually very hard to build a great company and team if you're aren't a genuinely decent person.

When a company is sold or is subject to the interests of people divorced from the original mission and values of the company, problems will likely emerge.

I guess my point is that you can't really trust anybody, because humans are the fundamental building block of both corporations and government, and their personal or collective self interests emerge to create issues regardless of their structure or purpose.

> because many companies are owned by decent people who have a personal value system and their companies are reflections of that

Sure. But in context of privacy, tell me, what personal value system is reflected in companies that suck in and process that data? I mean the marketing, the adtech, the data brokerage companies? Being charitable, I imagine it's "do well unto my customers (i.e. other companies); everyone else is irrelevant". Which I guess is defensible under the moral framework exploitative capitalism, but that doesn't satisfy me as one of those "everyone else" whose data gets processed. That people in companies that abuse my data have work ethics is not reassuring me in the slightest.

> When a company is sold or is subject to the interests of people divorced from the original mission and values of the company, problems will likely emerge.

I think almost all of companies are like that. In particular, VC-funded startups are like that from the day one - the investors are absolutely "divorced from the original mission and values of the company".

> their personal or collective self interests emerge to create issues regardless of their structure or purpose.

And my point is that if you look at the structure of these self interests, how they flow in the vector field of incentives, and if you look at what capabilities peoples, companies and governments have, the picture is pretty predictable: private companies will, on average, screw you over always, incessantly; governments (at least the western kind) will be friendly most of the time, but if and when they do decide to screw you up, the immediate consequences will be much worse.

Governments are made up of people capable of good and evil just the same as private companies. If we’re simply going by the historical record, governments have committed some of the world’s greatest atrocities in the name of certain genetic theories.

> governments have committed some of the world’s greatest atrocities in the name of certain genetic theories.

As have private companies.

Like?

I trust the government more than a for profit corp for this.

Which form of abstract grouping of people is the most trustworthy?

The group that you have some sort of actual say in how they operate. That usually means the government, not a private business.

I would say that statistically, over a large sample size, that the chances that either would abuse information is exactly equal.

I don't know that I'd say it's exactly equal, but the idea that any typical individual really has much say over the Federal Governments decisions is laughable.

Even if it were your local town, city, or county government managing it, do you think they're going to fight the federal government if they ask for access to it? Over you, a nobody, when the Federal Government is going to threaten to withhold money for whatever if they don't?

This is why we need smaller countries in any democracy.

Anything too big isn't democratic as much as political spending, alluring promises (that will be broken), campaigning, making the others look more evil than you, etc etc

You would be wrong. And in the unlikely case that you're right, you can organize and/or vote to do something about it.

https://www.vice.com/en_us/article/evjekz/the-california-dmv...

That's just one small example.

You can buy shares that give you voting rights in a company, and you can decide to spend (or not) your money with a company. The latter is not available to you with the government and has been shown, I would argue, to have a greater effect over a company than voting in a democracy, and that's as an individual. Maybe that's comparable with picking parties to vote for but it's not quite the same.

I wouldn't trust either form over the other though, and if anything, I'd want their incentives to be set up so they were mostly in opposition so as to limit the power of each other.

If I was to pick an abstract group to trust, it surely would be family first.

> You can buy shares that give you voting rights in a company

Which is saying that you can only have a "vote" if you're wealthy enough. That doesn't seem like an actual solution to me.

> and you can decide to spend (or not) your money with a company.

Which is what I do, but doing that doesn't affect the company's behavior.

> Which is saying that you can only have a "vote" if you're wealthy enough.

No, it's saying you can vote if you buy a share. Are you saying that wealthy individuals in a democracy don't have an outsized advantage in shaping policy and the behaviour of government? But they have the same voting rights as you or me, so there must be something else going on…

> doing that doesn't affect the company's behavior.

You're saying that withholding your money from a company has no effect on its behaviour? Try cancelling a long standing account with a company today, like your phone provider, and see if it provokes any kind of response. You might get a free upgrade out of it.

Sure, but a for-profit Corp can’t arrest you, in prison you, or take away your rights.

Sure, but they can lobby heavily to make that a likelihood, e.g. For-Profit Prisons.

Did you know most DMVs are selling your data to private companies?

What's a DMV?

department of motor vehicles

Indeed! Nearly every state does a heal prick of newborns and screens their DNA for a host of genetic disorders.

I'm similar. My sister pressured me into doing it about 5 years ago. These days, I really regret that I gave in and did it.

Surely most of the interesting stuff would be shared between you and your sister assuming you have both parents the same.

She wanted me to do it instead of her because you can get more information that she cares about from men than women, due to certain things linked to sex chromosomes.

Your kids can also be identified from your DNA.

What was your opinion 6/7 years ago about the people raising these concerns? Were you aware back then that sometime in the future you will (probably) regret it?

Not to worry, it’s a bit doubtful submitting DNA samples isn’t going to be obligatory at some point in the future. You can easily solve a lot of crimes with that.

The technology is here now. If a bad actor wants your data they can easily get it without you submitting anything. Unless you protect your bodily fluids I think you should generally already consider your dna compromised.

TIL: A handful of opt-in companies can test DNA, ergo, all DNA is compromised so just roll over.

Presumably someone will be following behind me next week to hoover up any bodily fluids I leave when I get Starbucks, and on my way home from the gym.

Since I'm a boring white male who isn't currently angering any "actors" of significant size I'm not too worried about that. I would be much more worried about 23 and me sharing my DNA than James Bond busting through my window and stealing my poop for DNA.

They need a SaaS!

Monthly/yearly subscription to updates of some sort

That might be workable.

Frankly, I think these mail-in DNA tests are like modern-day phrenology, but you could spin in that "pay us $x per year, and we will analyze your DNA every month once research becomes available".

Monthly/yearly subscription to updates of some sort

And tie it into credit score fear.

"Do you want a higher credit score? Sure, we all do. So be sure your 23andMe DNA is up-to-date!"

Pivot into mining all the present data and sell it to the highest bidder if not doing that already.

> Honestly, I would also say that a partial reason why these would've dropped is that everyone who can do it has done it.

In my immediate circle of acquaintances, that doesn't seem to be true. I haven't done it. I'm aware of it, but I've never looked into it, since I've never seen a reason to care.

This. Only so many people willing to spend $100 on a novelty purchase, and they do it once

This makes no sense. Most people only go to paris once, of bunjie jump once, or a billion other things. Just because you do it once doesn't mean it is no sustainable.

While I get what you're saying, "most people only go to Paris once" is a very odd analogy to use in this case. Paris may be a tourist destination, but it's not a tourism company. :)

In any case, I think the caveat to what you're saying is that the sustainability of a business proposition that many people only do once (or at least, do comparatively rarely) also has to take into account the cost. Very people take a Jeep tour of the Grand Canyon, but the Jeep tour company is almost certainly a very lean operation compared to 23andMe.

This sort of thing really makes me wonder whether execs thought about this scenario or not. It seems obvious to me that the novelty could wear off and people stop buying kits. Was it worth the effort and cost to ramp up staffing only to make them redundant?

Very good point, re-sales chances almost zero not allowing for product enhancements perhaps.

I use a blood test service (https://www.getlivesmart.com/) every six months but I can measure changes to my markets based on interventions to my lifestyle that they suggest post GP review. To me that type of service is worth it.

The Genetic Information Nondiscrimination Act of 2008 (GINA) specifically prohibits health insurance companies from denying coverage or setting rates based on such tests.

Legislation can be changed. Including retroactively.

Thank goodness for that. They definitely won't break that law. Nope. Corporations don't do that.

When it's in their financial interest, they will avoid doing things that cost them money. Lawsuits are one such cost. Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process. If you don't know, clearly you didn't use that info for discriminatory hiring practices.

Similarly, there was a very recent article about how GINA might be acting as a privacy law, since companies would prefer just not to know:

https://news.bloomberglaw.com/daily-labor-report/genetic-bia...

But then, there's about zero useful information in genetic information when it comes to hiring. If there were useful information, I'm sure we'd see far more violations.

I'm far more concerned about access to life insurance, which is not covered by GINA.

Also, it's very unlikely that a 23andMe type test will have enough clinical information that would be useful even for life insurance purposes or health insurance purposes. Clinical genetic testing is far more powerful that way.

Which is why companies train interviewers not to ask any information that laws prevent them from using during the hiring process.

And yet it happens all the time. All. The. Time.

If it didn't we wouldn't spend tens of millions of taxpayer dollars on enforcement agencies and lawsuits.

It doesn't matter how many laws are passed, companies are still run by people. And people do bad things, either knowingly or unknowingly or just because they can.

That is true as long as the cost of lawsuits is higher than the potential gain from breaking the law.

Companies knowingly break the law all the time, reek in profit and send out an army of lawyers to pay some minuscule fine that doesn't impact their bottom line.

Fines that don't threaten to break a companies business are just ignored and basically written off as operating costs.

Thank goodness for that. They definitely won't break that law. Nope. Corporations don't do that.

"We're sorry. We can do better. How about we help write a law that regulates us?"

You are correct but a major challenge of our time today and the near future is to see whether the rule of law still works against political or financial power. From the 2008 financial crisis onward, there is a growing public sense that the powerful cannot be held subject to justice any more.

I have to say that I personally would never purchase a DNA testing kit for this reason. On the social and political trajectory that I perceive, it might not matter what federal law says, if insurance companies can build a strong enough web of mutual favors with politicians or law enforcement.

> there is a growing public sense that the powerful cannot be held subject to justice any more.

Wrong. Not that they cannot.

Just that they ARE not. That only lasts for so long until people are fed up.

Then, reset.

"move fast and break things"

I'm far from an expert, but it also sounds like something that could violate HIPAA.

Companies routinely demonstrate that they're often willing to do prohibited things. And this seems like the sort of thing that would be very hard to prove.

Life insurance, disability insurance, long-term care insurance etc companies can use genetic data to determine costs for policyholders or to deny coverage[1].

[1] https://www.npr.org/sections/health-shots/2018/08/07/6360262...

Exactly. Many people naively thought that it was going to be positive. Build your family tree, get better ancestry information.

Even finding family relations can be fraught with issues like illegitimate children, sperm donors who thought they’d remain anonymous, secret affairs now outed and then there is the other health data aspect...

On CBS Sunday Morning this past weekend Steve Hartman had a piece about a 23andMe-style test let him know his parents weren't his parents and his family tree is actually a shrub that grew on the wrong side of the tracks.

Being Steve, the story was told in an awww, shucks Ron Howard style with a happy ending, but I found it kind of disturbing.

Some of those are evil secrets. Cheaters ought to be exposed. Living a lie is a terrible way to live.

Yeah, I don't feel at all bad about cheaters being exposed. But, children that result from that cheating... if you grew up thinking that your dad is your dad and then find out from a dna test that he isn't, that can really shake a person. And it's not from anything the child had any control over.

Inheritance: A Memoir of Genealogy, Paternity, and Love by Dani Shapiro is a recent book that explores these themes.

https://danishapiro.com/books/inheritance/

I don't know about 23andme, but I have read Privacy Policies of similar services in the past and they are all riddled with legalese and unclear phrasing that make using the service a complete no-go for me.

Also note that if the policy seems clear you have to follow and read the PP's of their partners and 3rd-parties, and then their partners, etc.

IANAL and you should be before bestowing your trust in such service, unless you don't mind having your DNA profile out in the open.

> Well, I don't think I have any pre-existing conditions and certainly don't do drugs, but I don't know about any unknowns on the health side that could impact my insurance if they were to share it to the company. Forget that.

In the US, only health insurance companies are not allowed to use genetic data to increase premiums or deny coverage, at least for now. I'm not sure what the rules are about using data derived from genetic data, however.

Life insurance, disability insurance, long-term care insurance etc companies are allowed to use genetic data to determine costs for policyholders or to deny coverage[1], however.

That fact alone is the reason I won't hand over my genetic data to a third party.

[1] https://www.npr.org/sections/health-shots/2018/08/07/6360262...

The problem is that... people/companies sometimes do things even if they are illegal.

I agree, this is definitely something to worry about. The reason I brought it up wasn't to dismiss such worries, but to highlight the fact that even if someone isn't worried about the health insurance aspect today, they definitely should worry about how the collection of their genetic data could impact their ability to purchase other types of insurance.

While you may or may not have trust in the US government protecting your rights, there was a law passed years ago that somewhat addresses your concern.

GINA (Genetic Information Nondiscrimination Act) https://www.govinfo.gov/content/pkg/BILLS-110s358rs/pdf/BILL...

I also bought a 23 and me test, but I intend on submitting mine with some DNA recovered from a Mummy or something like that.

For people glad that "crimes will be solved", must be noted that criminals could use it in their benefit also. Just submitting a strange DNA, from a deceased people for example, to be linked with their name. That would taint the database, make they invisible to computers searching (dead people don't commit crimes) and send the hounds far away eventually. If caught you can always blame the lab for mixing your data.

Looks like the modern equivalent to having a new identity after a fake new ID card.

Dang good call. Gonna order up a kit and throw some random homeless persons spit/hair in it

I wanted to buy one for a while, and my girlfriend offered to get me one for Christmas, but this is the reason I didn't.

When 23andme first started they were offering that a sample and your data could be destroyed whenever you liked. Then they got bought and their erasure document is a disgrace, their default position is they can't delete your genetic data and they don't say a thing about the sample at all. Those were not the terms under which it was collected.

There is a reason their business is failing and its because of this enormous change to their basic policy. What they have changed to is against the law in the EU and it is definitely not GDPR compliant despite the amount they say it is in their document.

I just sent in my spit last week and I thought they were very transparent about their data protections. They allow for you to delete your data and deny access by third parties, albeit they require 30 days to process any changes. I'm interested in learning more about my heritage, as well as contributing to genetics research. Maybe their terms have changed over time, but overall I found their explanations to be clear and thorough.

No, that's the obvious "reason that you think should matter but doesn't".

> and certainly don't do drugs

What about alcohol or caffeine?

Since when do they test for those in insurance related drug screenings?

Actually neither. Family history with alcohol, burned out on coffee as a kid (would drink it at my grandparents' house pretty regularly), and sodas I kicked a couple years ago because it was starting to burn when drinking some of the stronger ones (my fault. Consumed it like it was water.)

But fair point, I didn't consider that when saying drugs. Meant more along the lines of drugs that work could come down on me for (marijuana and up. Personally, I think if alcohol and cigarettes are legal, so too should marijuana, but the legalization of it wouldn't change my non-use of it. Just seems a stupid prohibition to have within the context.).

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