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 selling data to pharmaceuticals. They claim it is opt in, but I have a hard time believing them. And they prompt me to opt in about once a month. I no longer recommend.
> 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 anyone has about their conclusions.
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 scanning of research for genes related to me. 23andme sort of does this again, but for years they didn’t.
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.
> Any test that leads to unnecessary treatment is unsafe.
The AMA argues against letting patients run their own lab tests too, and fortunately lost. While it is possible that people could make mistakes using their own data, but this is rare and certainly the data being available is a net positive for people.
Using your definition, wouldn’t it be more dangerous to only make the information available to rich people and prevent the information being available affordable? $100 for webmd is much cheaper than the tens of thousands it would cost to consult with specialists, counselors, and gps.
We need to look for ways to lower healthcare costs, not scare people about hypothetical dangers that just happen to be solved by very expensive tests and consults.
> 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.
The 3rd party sites I've used don't ask for any identifying information though (unless you want to pay for paid features), it wouldn't surprise me if there were simply downloaded freeware that you could use to do it offline on a virtual machine if you even wanted.
A quick Google query leads me to this
>I recently wrote a small tool, Snappy, that can help you browse and interpret your raw data. Written in JavaScript, all processing is done on your browser, without transmitting sensitive data to any server. That also enables the tool to be used offline
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 we pass stronger laws protecting genetic data from being used for any type of insurance. Genetics =/= genetic expression, and the law should reflect that.
I don’t like my data used without consent. I don’t like my data passing through extra companies forever and dna is or will be always identifiable since it’s like, my dna.
I also don’t like the idea of companies making money off my data without compensating me.
The FDA made them remove health insights so that made the service less useful.
But two years ago they started selling data to pharmaceuticals. They claim it is opt in, but I have a hard time believing them. And they prompt me to opt in about once a month. I no longer recommend.