Did your relative?

I'm not a geneticist so I could be totally off the mark; but, to my understanding, the painful part is that is a big disclosure right there

yeah, it's like the shadow profiles on social media sites. just because you didn't do it, doesn't mean that someone else doesn't

My oldest brother did so I'm already screwed

Can even one single person here articulate their specific fears of using 23andme, or is it all FUD?

Sure. Someone who has their data in 23andme was someplace where something horrible happened. Law enforcement has no leads, so they process the DNA, and find no matches. They subpoena 23andme (or just look at the leaked data, who knows), and that person is now a person of interest. If they don't know they should have a lawyer on their side with them when being questioned, they might talk themselves into prison.

Now imagine that person is innocent.

I know it's not exactly the point, but the answer is you always have a lawyer if you're being questioned by the police, especially if you're not the one who called them. This is in no way specific to any DNA related situation. If any law enforcement shows up and has questions for you, you say nothing until you have a lawyer with you.

Lawyers are expensive. Most people can't afford one for even one encounter with the police, let alone multiple.

Doesn't matter. If they're talking to you say you need your lawyer present -- that will end the interrogation, and you might never need a lawyer. But if you don't say that you might end up convicted.

Pleading the 5th is free.

I'm not saying it's fair or right. As with most things in life, the cost/benefit makes it likely you'll have to take some risks, but people need to understand that literally any interaction with any law enforcement without a lawyer present is a risk of things going horrifically badly. This is especially true if they show up and you do not know why. That is a massive set of alarm bells that should be going off.

If you can’t afford a lawyer just say nothing. Nothing you say will help you; anything you say can be used against you. If you say nothing you force them to use other evidence which they likely don’t have.

Police (in the U.S. anyways) are allowed to use ruses almost without limits, so you might not even know you're being interrogated, and your answers can be used against you (and only against you -- never to exculpate you!) in a court of law.

IMO the hearsay rule is way too biased in favor of the government.

Worse! Say you know it's police asking you questions, and the questions are all very harmless, so you answer them, but then you start to get an inkling that you are a suspect, that they like you for some crime, so now you shut up and/or lawyer up, but guess what: your disposition's change from cooperative to non-cooperative can and will be used against you in a court of law!! What, you say? Yes, the SCOTUS in the 2010s (see Salinas vs. Texas, from.. 2014 IIRC) greatly reduced the 5th Amendment's protections in this way. If you're talking then clam up, the fact that you clammed up -and at what particular question- can be used against you. And if you never said a word to them, that too can be used against you! The only thing that works is to tell them very early on that you will only talk to them with your lawyer present [and since you don't have a lawyer yet you might never talk to them] then follow through.

If the police are talking to you it's either a) they think your testimony can convict someone else, and/or b) they like you for some crime and want to give you ample opportunity to convict yourself of it even if you didn't commit it (they may not know that, but they may like you so much for it that their bias is too strong to see that you're innocent) and even if you have no idea what the heck they're talking about (because they don't even have to tell you).

See all of professor James Duane's videos on this topic, starting with Don't Talk to Police (this one is pre-Salinas), and then the later post-Salinas reprise(s) of it.

I mean, assume any time you're talking with the police, you're being interrogated. If you called them yourself for something, then you've decided to take that risk, but that's also a situation where you're less likely to be in trouble yourself, though there's still a risk.

If I've committed a crime and gotten away with it for several decades, I don't need a relative to NARC on me by giving 23 and me and the feds a DNA sample, thank you very much.

It's bad enough they took my fingerprints when I worked for a school district.

Maybe too far fetched? Company sells/loses data, insurance companies use data to deny coverage, or deem claims as pre-existing.

Can an insurance company deny claim based on your DNA? They deny claims for pre-existing condition that you hid from the, which would be the wrong thing to do on your part. They cannot deny claim based on pre existing disposition. Practically everyone is predisposed for getting cancer by merely being human, you might even have cancerous cells in your body right now, that you body will destroy in a couple of minutes.

Health insurance in the US can't- it's protected by a law called GINA. Life insurance, however, can use DNA information.

Wrong people come into power, decide that they want some sort of purity based one genetic information, you are not it get genocided.

>you are not it [,] get genocided.

Wouldn't the singular be 'un-alived', these fucking days?

Well for one, English is not my first language, so take it with a grain of salt. Also: when I use genocide as as a verb, it means there is a concerted effort to kill of a group of humans, that you happen to be a part of.

I know we live in an individualist society, but when you are murdered as part of a genocide that has nothing to do with you as an individual, which is a significant part of the horror of the whole thing. You are then murdered because someone thought you belonged to a group that should be wiped of the face of the earth. Whether you really belonged to that group, whether you share the ideology of the group or of those doing the genocide, wheter you are a really nice individual has nothing to do with it.

So I chose that word for a reason..

Review world history.

> Can even one single person here articulate their specific fears of using 23andme

Sure. I find out my competitor for the top role has a degenerative disease, e.g. Parkinson’s. It’s not relevant for many years. But I use it, subtly, to shape opinion.

More pointedly: we are in an era of mass disinformation. The simple fact that somebody used 23andMe makes any lie about it somewhat credible.

There's a whole book about said fears.

https://www.amazon.com/Change-Agent-Daniel-Suarez/dp/1101984...

The company seems to be in rough condition. Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.

This is both dystopian and hilarious.

23andMe a subsidiary of Pizza Hut... We know exactly what you crave and it ain't anchovies.

> Say they go bankrupt and an ad-tech data broker buys their assets. Now DraftKings can laser focus their ads to folks genetically predisposed to addiction.

Excellent example, but yikes!

You’d have to work out what variants predispose for that which is no easy task. And once you did that you don’t even really need individual dna data. You might find say a swedish population tends to have the variant and you just target swedes in general.

Not having control of how my DNA is used. It can be taken by the state with a warrant, but otherwise I have control over it.

Besides the obvious examples of gathering a nice database to use for genocidal purposes... (sure lot's of idiots like to say that's overblown or not really a worry, while being alive in a world where there are on-going 'ethnic cleansing' campaigns).

There's also things like - the terms of service include the boilerplate "these terms are subject to change at any time", and I don't want those terms to suddenly change to "we will provide your PII to all insurance companies proactively in exchange for a kickback every time they are able to use it to reject a claim".

I already get hassled by the law somewhat frequently because my house used to be the residence of a criminal (2 owners ago it was used as a rental and that owner evicted said criminal). I don't want to add getting hassled by a bunch of people who came in below the max IQ requirements over someone I've never met because they're from "that side" of the family.

I took an alternate approach: my genome is freely available: https://my.pgp-hms.org/profile/hu80855C

When I was sequenced, a bunch of genetic counselors at Illumina analyzed it and said they couldn't find a single gene mutation that was linked to increased risk of disease, which was a surprise to me but is really absence of information rather than information of absence.

The problem with publicizing genetic information is that you're defacto publicizing large amounts of the genetic information of your relatives, who may not be in a life situation where publicizing it carries no risk. This is also an objection many have to 23andMe.

For example?

What if they live in a country in which genetic evidence of a disease can deny or significantly increase the cost of health coverage? Even if you're clear of those for now, a new marker may be discovered tomorrow. Apparently (according another commenter) Life Insurance /can/ legally look at this even in the US. What about employers? What if it puts them on the DNA-evidence hook for a "crime" in their jurisdiction which you and they don't think is an ethical law (evidence of homosexual activity in a country that imprisons for it, or worse).

The crime thing sounds like a huge stretch given it's not actually your DNA.

With the insurance example I'm not sure I have a problem with that? The whole pre-existing condition conversation around health insurance is totally out-of-whack. Insurance was not designed for things you know have happened. It was invented to reduce the downside of things that could happen, commensurate with the risk of that thing happening. It's risk management. It makes zero sense to apply that model to something like universal health coverage. If someone is 100x more likely to get cancer, their insurance premiums should be higher. Just like if I'm a ship captain sailing into the bermuda triangle my premiums should be higher than sailing around the mediterranean.

If you feel that everyone should have healthcare, utilizing health "insurance" for this is the worst of kludges.

Similar experience here, was WGS and running the results against ClinVar came up empty[1] for known disease causing variants. Was not expecting that at all.

But I totally think this is more an absence of information than anything else. We all have a ton of de novo variation and that stuff is not going to be found in the databases.

1. Am carrying two recessive variants linked to a couple extremely rare developmental disorders (prevalence in live births of less than 1 in 10,000,000)

This is very unethical and you should be ashamed of yourself. You leaked 50% of your direct relatives here, 50% of any future or current children you have. Did you ask them for consent?

Perhaps my ethical framework does not match your framework? Note that I start from the premise that genetic data is not possible to keep secret (you shed skin cells in public, state-level agents can get warrants to grab a cup you used from the garbage, etc).

(no, I did not ask my children or my spouse or my parents or any other relatives for "consent").

Nothing is possible to keep secret if you're talking about state level agents combing through your garbage obviously.

But do you think there might be a difference between leaving out a cup of coffee you drank from versus publishing it and advertising it online?

Even assuming you had a point, which I don't believe you do, it wouldn't be your place to decide this.

You know for certain people won't ever face discrimination or other negative things based on their DNA? Where does this confidence come from?

Why not? What practical harm is caused to you by other people knowing your DNA?

Now or in the future?

Book recommendation for you: “IBM And The Holocaust” by Edwin Black.

If IBM (then known as Hollerith) could do that much damage with German census data on punchcards…

> Mankind barely noticed when the concept of massively organized information quietly emerged to become a means of social control, a weapon of war, and a roadmap for group destruction.

From IBM and the Holocaust by Edwin Black.

Imagine the "massively organized information" that will be available to people in power in the future. It doesn't have to be a genocide for it to be useful to them. People in power today are fully on board with "social control" and it's so uncontroversial that they talk about it openly.

Comments like this are why schools should make liberal arts education mandatory again in the STEM curriculum

Why? It's just a record of a group of letters, not your soul. I upload my dna records everywhere I can. Sure I had some surprises but in general I benefit from those services.

The religion on census data of people living in the netherlands also was just a bunch of letters, till the Nazis invaded, then suddenly the bunch of letters got another meaning.

What the Nazis would have done if they had gotten their fingers onto such a ddatabase is anybodies guess.

high time preference thinking

Only gotta last 80 years, it's pretty rational given the constraints. The what-ifs are unlikely to materialize at all, low probability to happen to you, and avoiding them if they do materialize requires that neither you nor any of your relatives submit their dna or have any contact with the justice system ever.

DNA is already protected from use by insurance companies so that's a future harm that already got squashed.

Funny you picked 80 years. It's been roughly 80 years since members of a certain ethnic group were hunted down, corralled, and murdered because of their lineage and genetics.

And their murderers mostly only had census data and people willing to snitch on their neighbors to go on. A DNA database? Oof.

Thankfully time only goes forward and since I don't expect a large scale ethnic cleansing among the developed world since our birth rates are already below replacement I think we're fine.

Tell that to China, Russia, and Trump.

Thank you for your interest in 23andMe, unfortunately we have decided to not move forward with your application.

That's ethical egoism, not rationalism.

Considering the second- and third-order effects of one's own decisions is obligatory in civilized society.

Of course, how could I forget. My DNA is also used for medical research so I'm helping develop novel treatments to all manners of genetic diseases, and helping my future relatives uncover health risks.

blind optimism

Negativity bias.

Years ago I would have agreed with you but I have my anxiety under control now.