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FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

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Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#101

Post by peteretep »

butisaidsudo wrote: post #4

> 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 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.

But in summary:

I've decided (having thought I definitely wanted to know) not to get tested. I'm glad there wasn't a button on 23andMe I could just click to find out. It's a complicated decision, should require some thought, and has life-changing consequences. While I'm strongly pro-choice, I also don't think 7-11 should be selling abortifacient drugs -- just because technology can make some decisions easy to execute on, doesn't mean they should be as easy as clicking a button.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#102

Post by problems »

peteretep wrote: post #101
butisaidsudo wrote: post #4

> 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…

I'd much rather that kind of thing be available as clicking a button personally. Getting information that could help you make big decisions is very useful.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#103

Post by nether »

Kequc wrote: post #25
butisaidsudo wrote: post #4

> 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…

> When I signed up the sample they took was spit in a vial.

Yes, and? I don't see the significance of the testing medium here. DNA sequencing from hair or blood or saliva will yield identical results.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#104

Post by zimzam »

mrfusion wrote: post #83
fudged71 wrote: post #57

Earlier quoted context omitted.

This is the purpose of Genetic Counselling. A friend of mine does this and I can certainly see the value in having someone who understands the science walk you through the outcomes.

I see genetic counselors as gatekeepers to the information about our own bodies. Just give me my results and let me figure it out for myself. If some people want the service of a counselor let them get it but don't bar people from their own bodies. We research other issues ourselves and the world hasn't ended. Imagine if you weren't allowed to read the Bible but had visit a "bible counselor" if you wanted to find out…

Not sure if you're trying to be ironic but that's exactly how it worked for many hundreds of years: remember that historically speaking, outside the Church most people couldn't read. One source estimates that in 1300 CE only 6% of England's population was literate! "Bible counselors", aka priests, were indeed the only way for most people to get information from the bible.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#105

Post by kregasaurusrex »

gleb wrote: post #96
Balgair wrote: post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

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…

Is there a list of genetic services and what data they provide somewhere, maybe a comparison of sorts? My father recently passed away of arryhtmia and I'm looking for a way to determine if said condition is hereditary or not.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#106

Post by awalton »

...right as the Republicans want to remove some of the protections afforded by GINA. [1]

While I'm sure this helps 23andMe's business case, it's a seriously scary time to consider getting your genome sequenced right now.

[1]: https://www.washingtonpost.com/news/to-your-health/wp/2017/0...

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#107

Post by tonyhb »

gleb wrote: post #96
Balgair wrote: post #24

Are they still saying that by submitting a sample to them, that they then own your genome and can sell it to whoever they want? I'd love to get mine sequenced and check it out a bit, but not if they are going to sell it off to a million shady companies whenever they go bankrupt (maybe 50+ years, but still)

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#108

Post by aarongolliver »

nether wrote: post #103
Kequc wrote: post #25

Earlier quoted context omitted.

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…

> When I signed up the sample they took was spit in a vial. Yes, and? I don't see the significance of the testing medium here. DNA sequencing from hair or blood or saliva will yield identical results.

They're saying the testing medium itself made the test appear less scientific/accurate (to them) than it actually is. Perhaps if it had been a hair sample it would have appeared more scientific (again, to them).

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#109

Post by make3 »

chrsstrm wrote: post #89
arthurjj wrote: post #77

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.

Preventing 23andMe from directly linking a subject's genome to a name, cc, and mailing address would be nice, but what prevents them from comparing the test results to other subjects who have submitted samples? If my genetic relatives have also been tested by 23andMe then filling in the relationship graph doesn't seem too difficult, especially if given access to other social graphs. Does 23andMe offer certified isola…

good point, but on the short term at least, it would be pretty surprising if a sufficient amount of people took the test for that to be an actual preoccupation, lest you have reasons to think members in your family would specially likely to get the test (ie, history of genetic illnesses or a geeky uncle interested in biotech)

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#110

Post by moonka »

peteretep wrote: post #101
butisaidsudo wrote: post #4

> 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…

If you don't mind me asking, why would you prefer not to know?
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