4 ms·

Here is a company who is trying to make genetics more accessible, approachable, and comprehensible. > It would be better if 23AM presented medical genomic info

by shazow 13y ago

Here is a company who is trying to make genetics more accessible, approachable, and comprehensible. > It would be better if 23AM presented medical genomic information in a neutral way, with external links to descriptions of genomic variations but no assertion of diagnostic significance at all, or even a mention of how to obtain a diagnostically significant result. What you're suggesting would effectively revert the consumer experience about half a step above "go to lab X to sequence your DNA, then hop on over to SNPedia.com to figure out what it all means." > Unfortunately, the way 23AM is packaged (see the website), they are incentivized to do the opposite... Perhaps this is more subjective than worth talking about, but that's not the impression I had when using and working on the product. All the more reason they need to be careful, for sure. Disclaimer: I worked at 23andMe's frontend team briefly, a few years ago. While I have mixed feelings about their engineering practices and other things, I do believe in and support their mission.

tptacek 13y ago
It is impossible to read 23AM's current website and not come away with an impression of the tool's clinical ambitions. I strongly buy into the idea that everyone working on the product is doing so with the best intentions and I'm thrilled to be living in a time when products like it are available at its price point. But their marketing is incautious and might need to be tuned up.
- shazow 13y ago
  > But their marketing is incautious and might need to be tuned up. You're probably right. Unfortunately it's too easy to create a gap between the public-facing marketing messaging and the real spirit of the product. I can think of many companies who struggle with this. If you do become a customer, it's evident that they perform an admirable effort to make the results appear as neutrally educational as possible. Every data interpretation is heavily cited and explained, all the while urging further clarification from a medical professional. (Let me know if you'd like some screenshots.) Personally, this is above and beyond of what I would expect, and there are competitors (especially foreign) who do far less. I can see why the FDA would prefer to have everything that could be interpreted as medical advice to be regulated and controlled, but I'm not convinced that it would yield a net benefit to consumers in this case.
MichaelGG 13y ago
What would be wrong with offering a product that sequences your DNA, then highlights the most interesting bits with links to external sources? A customer would still get the benefit of knowing high-risk/important things to check out, and 23AM would be clear. The website could wrap it up to make it a smooth experience.
- tptacek 13y ago
  Probably nothing.
timr 13y ago
"Here is a company who is trying to make genetics more accessible, approachable, and comprehensible" No, it really isn't. It's trying to make a mass-market product that it can sell to unsophisticated end-users who don't have a prayer of understanding what they're seeing. Accuracy and precision are secondary concerns, and without those you're not actually doing genetics, but pseudo-science. I have a number of friends who have received 23's "analysis", and come to me to interpret all/part of their results. They're garbage. You shouldn't take any of it seriously, in any way. To properly interpret even the simplest parts of their report, you need a background in statistics and genetics that only highly trained people have. And even then, there's usually not enough information -- you need to do tons of digging into the literature to find out that some relative risk increase is highly conditional on population or that the original experiment was flawed in some subtle but important way. As they say: things should be made as simple as possible, but no simpler. There are things that are complicated for a reason, and you can't just discard the inherent complexity and claim it as a virtue. It's not disruption to be irresponsible.

by shazow 13y ago

tptacek 13y ago

It is impossible to read 23AM's current website and not come away with an impression of the tool's clinical ambitions. I strongly buy into the idea that everyone working on the product is doing so with the best intentions and I'm thrilled to be living in a time when products like it are available at its price point. But their marketing is incautious and might need to be tuned up.

shazow 13y ago
> But their marketing is incautious and might need to be tuned up. You're probably right. Unfortunately it's too easy to create a gap between the public-facing marketing messaging and the real spirit of the product. I can think of many companies who struggle with this. If you do become a customer, it's evident that they perform an admirable effort to make the results appear as neutrally educational as possible. Every data interpretation is heavily cited and explained, all the while urging further clarification from a medical professional. (Let me know if you'd like some screenshots.) Personally, this is above and beyond of what I would expect, and there are competitors (especially foreign) who do far less. I can see why the FDA would prefer to have everything that could be interpreted as medical advice to be regulated and controlled, but I'm not convinced that it would yield a net benefit to consumers in this case.

MichaelGG 13y ago

What would be wrong with offering a product that sequences your DNA, then highlights the most interesting bits with links to external sources? A customer would still get the benefit of knowing high-risk/important things to check out, and 23AM would be clear. The website could wrap it up to make it a smooth experience.

tptacek 13y ago
Probably nothing.

timr 13y ago

"Here is a company who is trying to make genetics more accessible, approachable, and comprehensible" No, it really isn't. It's trying to make a mass-market product that it can sell to unsophisticated end-users who don't have a prayer of understanding what they're seeing. Accuracy and precision are secondary concerns, and without those you're not actually doing genetics, but pseudo-science. I have a number of friends who have received 23's "analysis", and come to me to interpret all/part of their results. They're garbage. You shouldn't take any of it seriously, in any way. To properly interpret even the simplest parts of their report, you need a background in statistics and genetics that only highly trained people have. And even then, there's usually not enough information -- you need to do tons of digging into the literature to find out that some relative risk increase is highly conditional on population or that the original experiment was flawed in some subtle but important way. As they say: things should be made as simple as possible, but no simpler. There are things that are complicated for a reason, and you can't just discard the inherent complexity and claim it as a virtue. It's not disruption to be irresponsible.