441–450 of 458 posts
I just wonder what happens to everyone's DNA data as the company faces financial trouble and/or sells itself. That's in addition to any concerns about possible security breaches that might occur.
This is an important question. Ancestry, for example, has been taking on debt to pay dividends at the behest of its majority shareholder.
I just wonder what happens to everyone's DNA data as the company faces financial trouble and/or sells itself. That's in addition to any concerns about possible security breaches that might occur.
Has anyone read their "research consent"? https://www.23andme.com/en-int/about/consent/ "If your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage." This is about data breach but within, they acknowlidge the potential usability of those data for insurance bussiness. I wonder who would buy…
Is there any way to prevent them from using it for that purpose or to determine if my insurance company has access and is using it?
Earlier quoted context omitted.
their data could be very valuable depending on the evolution of personal medicine.
Their existing data can't really be used for personalized medicine. If they want to pursue that market they'll need different testing protocols and additional regulatory approvals.
i would say assays are useful for personal medicine. they get about 6m variants.
> 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…
> and certainly don't do drugs What about alcohol or caffeine?
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.).
Earlier quoted context omitted.
> you think the people who do genetic ancestry are idiots. I've seen anonymous but redacted proof-bearing confessions from people these companies saying they "fuck with pure white people" by throwing in random ethnicities, so...at minimum, not all of them respect the integrity of their work. Which shouldn't surprise anyone, due to...them being humans.
It sounds like you read an absurd fan fiction. The notion is absolutely ludicrous for a variety of reasons that are too boring to get into here, but it is absolutely remarkable the nonsense parroted about 23andme on HN.
I did this almost 8 years ago for the health insights and recommended it to a few dozen friends and family because the UI was nice, they added new reports, and they were the only low cost provider at the time that let me export my data. I loved the service and found an unknown sibling through the site. The FDA made them remove health insights so that made the service less useful. But two years ago they started sellin…
> The FDA made them remove health insights so that made the service less useful. I believe there are third-party sites that will still give you this information if you upload your raw data. Though of course, this has the downside of giving yet another party access to your data.
I did this almost 8 years ago for the health insights and recommended it to a few dozen friends and family because the UI was nice, they added new reports, and they were the only low cost provider at the time that let me export my data. I loved the service and found an unknown sibling through the site. The FDA made them remove health insights so that made the service less useful. But two years ago they started sellin…
> The FDA made them remove health insights so that made the service less useful. This is like saying a medical product is less useful because the FDA made it remove horoscopes. If the health insights aren't proven to be accurate, they aren't either safe or useful. My ex is a quantitative geneticist and always said that we know almost nothing about genetics, and these companies are vastly inflating the certainty anyon…
You may argue that it’s not useful, but saying it’s not safe is hyperbole as there is no evidence of danger or misuse and there’s been like 10-15 years for horror stories to come up.
I would like some way to automate my scanning of research for genes related to me. 23andme sort of does this again, but for years they didn’t.
I did this almost 8 years ago for the health insights and recommended it to a few dozen friends and family because the UI was nice, they added new reports, and they were the only low cost provider at the time that let me export my data. I loved the service and found an unknown sibling through the site. The FDA made them remove health insights so that made the service less useful. But two years ago they started sellin…
I’m curious for the reasoning behind why selling the data to big pharma is a bad thing? I was thrilled to hear about that personally as I am very supportive of large pools of genetic data being harnessed for drug research. Big pharma has big money and lots of smart folks, if they can leverage 23&me’s data to create better drugs or find the root cause behind diseases, it seems like a win to me. That said, I hope that…
I also don’t like the idea of companies making money off my data without compensating me.
Earlier quoted context omitted.
> The FDA made them remove health insights so that made the service less useful. This is like saying a medical product is less useful because the FDA made it remove horoscopes. If the health insights aren't proven to be accurate, they aren't either safe or useful. My ex is a quantitative geneticist and always said that we know almost nothing about genetics, and these companies are vastly inflating the certainty anyon…
Not really, what they did is basically summarize all the various research related to genes. It was mildly useful, but more so as just a way to easily have some surveillance as new research came out. You may argue that it’s not useful, but saying it’s not safe is hyperbole as there is no evidence of danger or misuse and there’s been like 10-15 years for horror stories to come up. I would like some way to automate my s…
It absolutely is not hyperbole.
Any test that leads to unnecessary treatment is unsafe. That list typically includes anything with false positives. For example, excessive testing for certain cancers (like breast cancer) lead to higher death rates.
Here's a concrete example where poorly-understood genetic testing has led to unnecessary surgery, which is obviously not safe.
https://www.webmd.com/breast-cancer/news/20170412/misunderst...