Comment by SoftTalker
Comment by SoftTalker 3 days ago
Zero chance I ever give my DNA to one of these companies.
Comment by SoftTalker 3 days ago
Zero chance I ever give my DNA to one of these companies.
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.
> 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...
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.
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?
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?
> 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.
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.
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