Independent directors of 23andMe resign from board
(investors.23andme.com)625 points by LarsDu88 3 days ago
625 points by LarsDu88 3 days ago
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
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.
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.
This would make for a great case study in corporate governance.
I hope someone is writing a book on _Corporate Governance in Silicon Valley_, and include stories from, say, 23andMe, OpenAI, WeWork, Uber, and tons more. I'd pay $$ to read 'em all in one place.
/sarc
“Nearly every baby born in the U.S. has blood drawn in the immediate hours after their birth, allowing the baby to be tested for a panel of potentially life-threatening inherited disorders. This is a vital public health program, enabling early treatment of newborns with genetic disorders; for them, it can be the difference between a healthy life and an early death.
But recent news suggests that police are seeking access to these newborn blood samples in criminal investigations. Such use of this trove of genetic material — to hunt for evidence that could implicate a child’s relative in a crime — endangers public trust in this vital health program and threatens all Americans’ right to genetic privacy.”
All of our new babies had heel stick blood drawn, won’t the government be the eventual competitor of 23 and me (since Americans don’t care too much about privacy).
https://www.aclu.org/news/privacy-technology/police-are-usin...
My most radical political opinion is that we need a right to privacy enshrined in a constitutional amendment.
And it needs to be robust enough to prevent the government from subpoenaing data collected by private companies.
I am very much not an expert, but my understanding is that the third-party doctrine[1] means that it (mostly) doesn't.
Should, but doesn't as construed by the SCOTUS and the appeals courts below them. I think their reading of the 4th Amendment is in fact mostly right, especially as interpreted in the context of 1789. We could use an amendment to strengthen privacy, but it's hard to write such a thing considering that almost everything we do nowadays is between "somewhat public" and "public".
The traditional favorite game of the supreme court is reducing the bounds of the 4th amendment. At this point its easier to list the things that the 4th protects than it is to list all the exceptions and "well actually not this..." situations the court has carved out.
I read the wording quite differently. I read a clearly exasperated board resigning in protest due to the intractable relationship with, the poor decision making of, the CEO. If an independent board is unable to effectively govern because of the actions of the CEO, resigning is the correct course of action, and investors have a right to know why.
Zero chance I ever give my DNA to one of these companies.