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

23andMe meets FDA standards, adds back wellness reports

blog.23andme.com

Post reply on HN
Print view View original

81–90 of 92 posts

Re: 23andMe meets FDA standards, adds back wellness reports

#81

Post by dkbrk »

op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

> 23andMe can do whatever they want with your data

This isn't correct. 23andMe are quite expliict about how genomic data may be used in their [privacy policy](https://www.23andme.com/about/privacy/#jump-link-content-con...).

Research using your genetic data only occurs with your permission, and it's stripped of personally identifying information (i.e presented in aggregate) when delivered to third parties. 23andMe can't, for example, sell your genome to an insurance company.

23andMe don't have a fiduciary responsibility to protect your data, they have legal one. If you still find this overly concerning, you could just use 23andMe's genetic sequencing, which when I last checked was priced at below cost, download the data and tell 23andMe to delete all personal information.

Once you have the genetic data, there are many options for performing analytics. For example https://www.promethease.com/ which uses SNPedia and isn't under the same FDA scrutiny as 23andMe and doesn't have to self-censor.

Re: 23andMe meets FDA standards, adds back wellness reports

#82

Post by lionyo »

greggman wrote: post #79
xirdstl wrote: post #76

Earlier quoted context omitted.

Not speaking to the price, this makes sense. To achieve FDA approval, their reporting is much more conservative. That's probably for the best.

I'm not saying you're wrong but would you mind explaining why you think that's for the best?

Statistics and risk are meaningless when your name is attached to the report.

To go to the extreme, a 0.001% chance of genetic disease can drive a person to make emotional decisions.

Re: 23andMe meets FDA standards, adds back wellness reports

#83

Post by marchenko »

SwellJoe wrote: post #58
esaym wrote: post #25

Man, why is it so expensive? To test my wife and I would be nearly $400. I mean sure, it might help me be able to pre-treat any known trait based disease but still.. If all they are doing is running some DNA through a database, seems like the cost should getting lower, not higher.

There's another way to look at it: Compared to medical regulated DNA tests, such as those for breast cancer risk or other types of risk factors, which can cost in the thousands per marker , 23andme is astonishingly cheap. While I could never bring myself to spend the $199, I was a very early adopter when it went on sale for DNA day (maybe the first DNA day sale), and the rest of my family bought the next time it went…

There's another way to look at it: Compared to medical regulated DNA tests, such as those for breast cancer risk or other types of risk factors, which can cost in the thousands per marker, 23andme is astonishingly cheap.

Many of those medical genetic tests are more expensive because they directly sequence the region of the gene associated with the disorder, providing much more data (for example, for some BRCA tests, a 'marker' consists of thousands of genomic positions, where 23andme might provide only several SNPs). This is important because a lot of disease-causing mutations are private to a single individual or a very closely-related group of individuals, and would not turn up in the population-level GWASes behind the construction of the present 23andme assay.

Re: 23andMe meets FDA standards, adds back wellness reports

#84

Post by travisp »

superkuh wrote: post #77
travisp wrote: post #49

Earlier quoted context omitted.

Probably not: https://www.23andme.com/transparency-report/

If a US national security letter with a gag were used it wouldn't show up here.

Absolutely true. But that has nothing to do with the original comment which was about traditional law enforcement requests for information. Given that 23andme says they haven't actually given any information to the police, it seems unlikely that cooperation with the police is why their product is approved.

Re: 23andMe meets FDA standards, adds back wellness reports

#85

Post by lordCarbonFiber »

nitrogen wrote: post #74
adenadel wrote: post #64

Earlier quoted context omitted.

There is no concept of "genome security" because you leave your genome everywhere you've ever been. If someone wants your genome and is willing to spend the money to sequence it, they've got it. Let's estimate 6pg of DNA per cell and that we need 100ng of DNA for sequencing. Rounded up that means 20000 cells left behind. That means you cannot leave a single hair, fingernail clipping, feces, etc anywhere that you do n…

There's a massive difference between chasing down one person's DNA and gaining unwarranted access to a consolidated database of millions of genomes.

I'd pose the question, why? From a personal privacy perspective you have a lot more to worry about from the determined actor targeting you than a data breach in which your genome (likely not even linked to any other PII if they have set up their database correctly) is just another entry in a sea of data. On the other side of the the coin, those individually worthless genomes could become valuable to the furthering of medical science if you can collect them in mass and start to look at statistical trends.

Re: 23andMe meets FDA standards, adds back wellness reports

#86

Post by lordCarbonFiber »

nathas wrote: post #47
op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

I see it as helping myself future-proof myself. If I know I have inherent risks as I age, or worse, genetic mutations that could passed to my children, personally it's worth the possible data abuse to me. It would be very unfortunate if this turns into Gattaca though.

This is tangential to your post, but, everyone that watched Gattaca in high school and remember it as a good, thought provoking movie needs to sit down and watch it again. Gattaca is a terrible movie both from a general plot and from a scientific perspective. When the "hero" of a movie is the jackass that cons his way onto a crucial role in a space mission knowing it will kill him and leave the crew a man down, it's probably prudent to start asking questions about the other aspects. As far as we can determine the genetics for ambiguous traits like intelligence or physical ability are deeply complex and cross coupled things and it grinds my gears to have the "but Gattaca" crowd crawl out of the wood work everytime for topics like research into preventing recessive diseases like cystic fibrosis comes up.

Re: 23andMe meets FDA standards, adds back wellness reports

#88

Post by dekhn »

devonEnlis wrote: post #65
chaud wrote: post #2

I would like to know how the new report compares to the old one. Also of note, the price has gone up from $99 (as of earlier this week) to $199. edit: This NYTimes article has more details: http://www.nytimes.com/2015/10/21/business/23andme-will-resu... Now, after nearly two years, 23andMe is announcing on Wednesday that it will begin providing customers with health information again, though much less than before and…

I'm preparing a blog post on the differences between the old and new 23andMe reports, and how they compare to a raw data analysis with Enlis Genome Personal. Here are the headline numbers- Number of health-related traits reported: Old: 201 New: 36 RawData: 2109 Number of health-related variants reported: Old: 1283 New: 100 RawData: 13,537 I will also note that while they increased the price, they are still using the…

Can you check if they still report tongue rolling as a Mendelian trait?

Re: 23andMe meets FDA standards, adds back wellness reports

#89

Post by dekhn »

toomuchtodo wrote: post #61
op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

> It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. My genome is public on Harvard's Personal Genome's Project [+]; why would I care what 23andme does with my data? [+] http://www.personalgenomes.org/

I've also published my genome along with my name.

https://my.pgp-hms.org/profile/hu80855C

Re: 23andMe meets FDA standards, adds back wellness reports

#90

Post by dekhn »

op00to wrote: post #37

23andMe can do whatever they want with your data. It totally boggles my mind that someone would give a private company legal, full, and complete access to what makes you, you. We're still in the infancy of understanding what we can do with our genomes. Giving all our information over to an entity without a fiduciary responsibility to protecting your personal data is just idiotic.

Cam you articulate a coherent risk to an individual based on freely shared genomic information? Be specific in a way that could be used to make a decision.
Post reply on HN