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FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

161–170 of 195 posts

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#161
When 23andMe took down their health reports, I reimplemented most of them myself: https://github.com/cslarsen/arv/

(I.e., arv is a newer version of the older dna-traits, which includes the actual health reports: https://github.com/cslarsen/dna-traits/)

Just `pip install arv`, `python -m arv --example genome.txt` and you're good to go (it's fast as well, parses in 60-70ms).

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#162
post #28
post #19

My opinion is that this test is useless at the least and dangerous at the most. It provides information that in almost the totality of the cases no one can correctly interpretate and transform in actionable health advice. Not scientists, not doctors, much less consumers. But it is sold as a cutting edge scientific resource that will improve your life. It wont. Not even increasing the chance that you might avoid somet…

This test was extremely useful to me, as I found out I was a carrier for a previously unknown genetic disease. It was because I used 23andMe that I now know I am a carrier and can potentially prevent having a child who would suffer from this disease. I'd say that was worth 200 bucks.

23andme can only detect common variants. In general, common variants do not cause non-mild diseases - certainly nothing worth avoiding a child being born. You should certainly not be making decisions like that based on a report from 23andme.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#163
post #161

When 23andMe took down their health reports, I reimplemented most of them myself: https://github.com/cslarsen/arv/ (I.e., arv is a newer version of the older dna-traits, which includes the actual health reports: https://github.com/cslarsen/dna-traits/ ) Just `pip install arv`, `python -m arv --example genome.txt` and you're good to go (it's fast as well, parses in 60-70ms).

I used promethease report generation and it gave me around 500 paged document about everything related to my DNA.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#164
post #86

Earlier quoted context omitted.

I actually did some market research on creating a service to use 23andMe anonymously because of this worry (I'd call it 32andYou). Essentially the user could pay the service, and then the service would pay 23andMe. At higher paying plans you could pay for the swabs to be sent to a 32andYou shipping address so that 23andMe doesn't even have your mailing address.

A friend of mine did this when he used the service. Used the office of an acquaintance as his address, a fake name, and paid with a pre-paid Visa card that he bought in cash.

And then he rounded this off by sending them a bunch of his DNA in a bottle.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#165
post #25

> For several years, 23andMe has worked on demonstrating that its reports are easy to understand and analytically valid... I guess these are different reports, but I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence". Those reports seem not-so-easy to understand based on the patients she sees. One problem is that they warn that your offspring are at high risk fo…

When I signed up the sample they took was spit in a vial. It never clicked for me that this was going to be the most scientifically accurate reading of my health in all the world. I took part because it could give me some scaring and soothing. But I assumed I'd go get a real test done if I was actually worried or interested about something specifically. The website repeats this sentiment over and over, I learned abou…

> I learned about all kinds of interesting genetic stuff

And there's much more to be found. The service of 23andme only records a limited set of SNPs. Further there is "multiomics" (see [1]), where not just the genome is sequenced but a complete biological fingerprint of metabolites is taken at different timepoints. This can e.g. give insight in onset of a disease even before any symptoms present themselves. I wonder when this will become available as a (mainstream) service, but I guess soon.

[1] https://en.wikipedia.org/wiki/Multiomics

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#166

> For several years, 23andMe has worked on demonstrating that its reports are easy to understand and analytically valid... I guess these are different reports, but I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence". Those reports seem not-so-easy to understand based on the patients she sees. One problem is that they warn that your offspring are at high risk fo…

> I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence".

Do you really think a product can be built (for a reasonable price) which ensures that your genetic counselor does not get stupid questions from the consumers of the product?

That's like saying .

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#167

> For several years, 23andMe has worked on demonstrating that its reports are easy to understand and analytically valid... I guess these are different reports, but I know a genetic counsellor who describes 23andMe's carrier screening tests as "the bane of their existence". Those reports seem not-so-easy to understand based on the patients she sees. One problem is that they warn that your offspring are at high risk fo…

Yah. I've got a 50% chance of having Huntington's. When my parent was first diagnosed with it, me + all siblings were immediately going to get screened. Half of us actually booked to get the test done. But we later cancelled our screenings, and we're all now rather we didn't know. As I understand, genetic counselling in the case of HD is people telling you over and over again not to get tested. One of the constraints…

>One of the constraints on fertility treatment if you're at risk is that you can't have any procedure that removes the potential baby's right to choose whether or not to be screened.

Can you explain that a little more?

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#168
post #107
post #96

Earlier quoted context omitted.

Yes, that's exactly what they are saying. That's how they make money. And if that concerns realize that your doctor sells your EMR data, your pharmacy sells your prescription data, the labs sell your blood work data too. https://genos.co/ will do a 75x whole exome sequencing (very good quality even for a clinical test) for $500 with a good customer experience and they don't sell your data. You can then feed the data…

No, doctors, pharmacies and labs do not sell data; it's illegal under HIPAA regulations and you do not want to be caught liable under those laws.

HIPAA regulations explicitly allow for using de-identified data in research. https://www.hhs.gov/hipaa/for-professionals/privacy/special-...

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#169
post #56

Earlier quoted context omitted.

> There are studies providing solid evidence that Disease X can be typically delayed by years or decades if you do A, B, and C. > Is that information not valuable to you? It depends what A, B, or C are. If it's full mastectomy based on a misunderstanding of statistics then no, that information isn't useful and might be harmful.

I was specifically referring to the non-broken cases where there are no misunderstandings and the studies are valid.

Oh neat, do you have a list of those? /sarcasm...

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#170

Can't wait till the require these for health insurance... Seriously, is there regulation protecting people from "pre-existing conditions" discovered by their genetic analysis?

Coming soon to an insurance broker near you: https://www.newsroom.co.nz/@health--science/2017/04/04/17972...

Of course, this article is about New Zealand, but I will not be surprised to see similar things in the States. Thankfully ACA provides protection for health insurance, but we're already seeing things like https://www.congress.gov/bill/115th-congress/house-bill/1313.

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