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23andMe's Fall

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161–170 of 282 posts

Re: 23andMe's Fall

#161
post #77

This is a damning indictment of Wojcicki's management of the company. Failed execution on the drug development strategy over 10+ years, lying about growth, pushing out the cofounder, never making a profit, hack that went undiscovered for months ... about the only area she's had success is raising money and that's in large part thanks to being a member of the Silicon Valley elite. If she can't convince her family, fri…

There are 3-4 companies like Invitae (and not 23andMe) that genetic counselors send their tests to for analysis and treatment coordination with the MD.

Like another comment said, I think the DNA data 23andMe gets from their swabs and analysis is likely inferior from a drug-dev standpoint vs. what the pro firms do linked with the genetic counseling teams.

In that light, 23andMe's options don't look good. However, probably good news for the patient. As I was told by a genetic counselor at one of the main hospital systems that do this, a bulk of their work is rolling back expectations from patients who did 23AM first, and then when to a GC.

Re: 23andMe's Fall

#162
post #92

> As an added security measure, we have temporarily disabled the ability to download your raw genetic data. We hope to re-enable this ability soon, and we appreciate your patience. After reading this article I decided to download my data in case they go under. Was greeted with this message on the relevant page. Does anybody have some insight if this is related to the data breach or something else?

I believe under HIPAA, you have the right to access any of your medical data. If you really want your data, I would get a lawyer to write a nasty letter to them demanding it.

So far, genetic testing firms haven't been considered to be covered by HIPAA:

https://lawforbusiness.usc.edu/direct-to-consumer-generic-te...

Re: 23andMe's Fall

#163
post #77

This is a damning indictment of Wojcicki's management of the company. Failed execution on the drug development strategy over 10+ years, lying about growth, pushing out the cofounder, never making a profit, hack that went undiscovered for months ... about the only area she's had success is raising money and that's in large part thanks to being a member of the Silicon Valley elite. If she can't convince her family, fri…

what's PE? (edit: private equity?)

Re: 23andMe's Fall

#164

Earlier quoted context omitted.

If they go bankrupt they should destroy all the data but of course they will rather sell it to recover at least a bit of money.

If they file for bankruptcy, they cannot legally destroy the data. The data is a salable asset, the law requires them to preserve it so that it can be sold and the money returned to creditors. And many of the promises they have given about it's use can and will be broken by the trustees dissolving the company. The thing you need to consider when you give data to a company is not "will these people misuse this", but "…

This makes me wonder if there could be strong enough laws around protecting genetic info (for example penalties that pierce the corporate veil) that those with fiduciary responsibility to the company could argue that destroying the data is really in the shareholders' best interest.

I'm completely uninformed in this area. Is there precedent for anything like this in the modern day?

Re: 23andMe's Fall

#165

Earlier quoted context omitted.

It is not like they are doing real genomics. It’s devilishly hard to find genes responsible for conditions like schizophrenia, heart disease, asthma, diabetes, etc. The last thing you need is mountains of low quality data. Attempting to discover drugs is a proven way to make a small fortune by starting with a large fortune. Everything north of the Charles River in Boston would vanish if people stopped believing thoug…

I don't think 23andme's strongest asset point would be in direct drug discovery, but rather in helping target sub-populations for clinical trials. The SNP data that 23andme has is relatively low quality compared to proper sequencing, but (combined with their survey data) is probably at least as good, or better information available for typical clinical trial planning or screening.

> I don't think 23andme's strongest asset point would be in direct drug discovery, but rather in helping target sub-populations for clinical trials

Was there an issue with targeting sub-populations for clinical trials beforehand?

At an ELI5 level, if you're hoping your drug candidate will help cure disease X, you sign up patients with disease X to join your clinical trial. That's not the hard part!

(source: family member works at $bigPharma)

Re: 23andMe's Fall

#167

Earlier quoted context omitted.

> It would be far smarter for them to try to sell the data to drug companies. Haven't they already been trying this ... for years? (Way back in 2018): "GSK and 23andMe sign agreement to leverage genetic insights for the development of novel medicines" https://www.gsk.com/en-gb/media/press-releases/gsk-and-23and...

I wonder why that didn't work out for them...

Perhaps, to again (mis)quote Boromir: "One does not simply leverage genetic insights"

Re: 23andMe's Fall

#168

Earlier quoted context omitted.

Selling it is not a problem for the same reason they can't make a profit from it. It's not worth much. (They do have valuable data, but it's the survey answers and friend and family connections. Nobody really cares you have a G at SNP 12213244243.)

Well, nobody is really interested in the test to find out they have G at SNP 12213244243 either. They do it specifically to get the ancestry, health, and potential physical bias type information you mention - that's the only real data anyone is talking about when referencing the test. Plenty of companies would love to have that kind of data to target users with. The real killer would probably be around how useless he…

That's kind of what I mean by it not being worth much though. Sure, leaks are embarrassing - the most common issue here is finding out that your dad isn't your real dad.

But it's not useful for evil purposes because it's not /accurate/. It doesn't reveal all that much real additional information about your ancestry and health!

Since it's decided before you're born:

1. its effects are mostly already expressed and people can know them either by looking at you or (like life insurance) by making you get a medical exam before buying their services.

2. it can get out of date for cultural reasons. Your biological ancestry isn't always how you behave, like if you're adopted. Whereas last name + zip code is a pretty good predictor already.

But 23AndMe does have a lot of that information about their customers. The reason they have it is because they asked for it in surveys.

Re: 23andMe's Fall

#169

Earlier quoted context omitted.

All of the rest of the quotation makes sense to me, but I'm wondering about this part: > "We should never measure an entrepreneur by the standards of a rock-solid businessman". Is the author saying that a rock-solid businessman follows a higher code of ethics?

I guess it depends on what he meant by “rock-solid.”

>I guess it depends on what he meant by “rock-solid.”

Exactly.

There's more than one kind of rock-solid.

Someone who is a rock-solid entrepreneur will not lie, cheat, or steal whether they are in trouble or not.

OTOH an "ordinary" non-entrepreneurial businessman may just be one who has not faced trouble (may also have a lot less risk of that) and not started to lie, cheat, or steal. Yet. But may do so any minute at the drop of a hat and you would never know.

No need for a difference in codes of ethics, rather different kinds of rock-solid for thee than me.

It's easy to remember when Enron was a rock-solid client, packed with ordinary businessmen from ordinary business schools and typical backgrounds, until one day it wasn't. Wasn't rock-solid that is, and able to pay. All the businessmen there remained ordinary after that regardless, except for the few whose ethical transgressions were among the "unavoidable handful" for which there were serious legal implications.

Re: 23andMe's Fall

#170
post #107

Earlier quoted context omitted.

BGI (formerly Beijing Genomics) would be the one for you. https://www.bgi.com/us/sequencing-services/dna-sequencing/wh...

That seems like a service you send samples to. I want to buy a machine, observe the whole process myself and then destroy/scrub the machine.

BGI does not sell the machines they reverse-engineered from Illumina. You can sometimes find old Illumina machines on ebay, or buy a new NovaSeq for a about a million.
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