111–120 of 195 posts
> 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…
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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.
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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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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.
What sort of big decisions does knowing you have Huntington's disease help you make? It's a debilitating disease with no treatment or any way to prevent it.
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Those statements don't seem to say anything about the possibility of your data being acquired by God-knows-who in the event 23andme goes bankrupt.
After the Cloudera incident, I asked them to destroy my genetic sample and data. 23andMe's certification seemed clear that my data were no longer accessible by anyone.
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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.
What sort of big decisions does knowing you have Huntington's disease help you make? It's a debilitating disease with no treatment or any way to prevent it.
Hopefully at the very least even without testing to go from 50% to sure knowledge, that 50% number is enough to get people to create wills/trusts. Save your survivors a lot of trouble with just a little up-front time and cost.
Is there any way to just have your entire genome sequenced and get all the data in a software-friendly format? At that point there could/should be some open source software for analyzing it and finding common or well understood things like this. That way the software could be updated and people could re-run their analysis to look for newly discovered stuff. I think this would be an awesome amount of fun. I for one wo…
Have you already done a 23andMe analysis? If so, you can check out https://promethease.com/ . It's exactly what you're looking for as they have constant updates that make it worth your while to rescan every year or so.
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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)
I mean sure, I could be way off, but I could also totally see any of my family members taking the test out of curiosity and I don't see any of them announcing it beforehand. I totally see the genealogy use case as a gateway drug to making this more popular.
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> 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.
Full mastectomy is kind of excessive, no? I would just be more vigilant for lumps and test more.
Angelina Jolie wrote in an OP-ED about her choice to undergo a preventative double mastectomy.
https://mobile.nytimes.com/2013/05/14/opinion/my-medical-cho...
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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.