Hacker News Board Hacker News, browsed like a classic message board
Live data from Hacker News

FDA Authorizes Ten 23andme Genetic Health Risk Reports

blog.23andme.com

Post reply on HN
Print view View original

81–90 of 195 posts

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#81

Post by jdavis703 »

mrfusion wrote: post #76

The FDA thinks it can decide what I can learn about my own body.

23 and Me gives you the raw genetic report. If you're sophisticated enough to not panic and jump out a window because you have some terrible disease, the assumption is you can also find open source data and/or software that will give you this same information.

The problem with what 23andme was doing is going direct-to-consumer with tests that were potentially sketchy. If you're willing to risk sketchy information you can find all kinds of bleeding edge research on your particular genetic makeup and choose how to handle it.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#83

Post by mrfusion »

fudged71 wrote: post #57
TTPrograms wrote: post #48

Earlier quoted context omitted.

Thanks to the 23andMe test I found out have I think 6 of 8 rare bad variants of various genes that give me what's currently estimated at around a cumulative 50% chance to develop a particular type of leukemia late in life. Of course, 23andMe doesn't provide this information - I came across it accidentally while studying my SNPs with other third party tools. I don't really think about it that much - experimental treat…

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 about things in the Bible. (I use that example because people make serious life decisions based on the contents of the Bible all the time. )

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#84

Post by mrfusion »

jdavis703 wrote: post #81
mrfusion wrote: post #76

The FDA thinks it can decide what I can learn about my own body.

23 and Me gives you the raw genetic report. If you're sophisticated enough to not panic and jump out a window because you have some terrible disease, the assumption is you can also find open source data and/or software that will give you this same information. The problem with what 23andme was doing is going direct-to-consumer with tests that were potentially sketchy. If you're willing to risk sketchy information you…

We're acting like adults can't handle getting bad news. We're infantilizing them. People get bad news all the time and don't jump out windows.

By your argument we should regulate who's allowed to tell people that a relative has died.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#85

Post by jdavis703 »

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…

Have you ever worked in tech support? Seemingly simple technical information can be very mystifying to people without good critical thinking abilities.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#86

Post by dikdik »

arthurjj wrote: post #77
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)

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.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#87

Post by PeterisP »

TheSpiceIsLife wrote: post #33
hartator wrote: post #18

Earlier quoted context omitted.

Very few companies even scan your entire DNA. 23andMe analyzes for example maybe less than 1 or 2%.

Presumably most (98% isn't it) of our DNA is the same thought, right? About 98% of our DNA does just makes an ordinary human body with normal systems. So we're only interested in the 2% that can vary . Or whatever the actual numbers are.

A single error in the very large part of DNA that shouldn't vary per individual but "makes an ordinary human body with normal systems" means that you don't get an ordinary human body with normal systems.

Many such errors cause non-viable embryos, but if you have survived up to this point, then such a difference is still quite likely to have a meaningful impact to your health and is precisely the part that you'd want to have scanned and verified.

For adult DNA scanning we're not really interested in all the genes vary between all people and code for the color of your eyes, the melanine content of your skin, the shape of your nose or your height - but we are very much interested in, for example, scanning your genes that encode CFTR protein to check if you (or your kids!) will have issues with cystic fibrosis.

It's possible that you don't really have (or your kids are likely to not have) an "ordinary human body with normal systems" - that's what you'd need to find out.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#88

Post by PeterisP »

mrfusion wrote: post #84
jdavis703 wrote: post #81

Earlier quoted context omitted.

23 and Me gives you the raw genetic report. If you're sophisticated enough to not panic and jump out a window because you have some terrible disease, the assumption is you can also find open source data and/or software that will give you this same information. The problem with what 23andme was doing is going direct-to-consumer with tests that were potentially sketchy. If you're willing to risk sketchy information you…

We're acting like adults can't handle getting bad news. We're infantilizing them. People get bad news all the time and don't jump out windows. By your argument we should regulate who's allowed to tell people that a relative has died.

Adults can't handle misleading and inaccurate health information, and are known to spend large amounts of money to e.g. literal snake oil peddlers back when peddling snake oil as a cure-all wasn't prohibited.

Yes, we are regulating who's allowed to tell people that a relative is going to die, and we're asking people who do so to show evidence that they know what they are talking about. If someone would go around selling a service "is your relative going to die" by guessing or simply telling what they want to hear, then that should be regulated and prohibited.

As another poster said, "One problem is that they warn that your offspring are at high risk for some condition, when really "high risk" means 0.5% higher risk than the general population. The other is that they may say you are not a carrier for a certain condition, when they only test for one variant of it, where proper tests will test for multiple variants."

If you tell people "we ran a test for X and it was positive/negative" then you'd better be able to show that whatever rituals you performed actually lead to reasonable information about X. Simply having a test that has some information related to X (e.g. if it would be used together with other factors to diagnose X or not X) doesn't mean that you can honestly describe it as "test indicating a high risk of X" - it may be that this particular test is indicating that, and it may be that it (alone) is misleading, and we need someone (e.g. FDA) to draw a line.

Re: FDA Authorizes Ten 23andme Genetic Health Risk Reports

#89

Post by chrsstrm »

arthurjj wrote: post #77
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)

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 isolated analysis?
Post reply on HN