Bailey Vincent
New member
Has anyone ever tried the 23andme website? It gives you information on your genetics- not to the clinical level, but it still seemed pretty interesting. I was randomly curious... Thoughts?
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23andme: Genetics Website
- Thread starter Bailey Vincent
- Start date
I'm pretty heavy into genetic genealogy and have tested at 23andMe. One of the markers it tests for is CF, which it reported correctly that I am DDF508. There are probably some rarer mutations that it does not test for. Otherwise, it gives you info on dozens of other possible conditions and traits. It also compares your DNA with others who have tested to help discover distant relatives. It's all very exciting for me.
LittleLab4CF
Super Moderator
Compared to say Ambry Genetics’ full amplified CFTR analysis, it is a waste of money for most. It may also be the thing next to an Icie machine at 7-11 in a few years. My niece had a paternity test in 2009 and it was reasonable, something like $350. Ambry charged essentially the same for the 250 mutations back in 2002 as the 1900+ they did in 2012.
Now 23andme is doing broad genetic screening that catches many important errors like the short panel test for breast cancer perpetrating genes, or if you have family with Huntington's disease. Right now I would call it extravagant because most genetic diseases await success with CF's genetic drugs before most other genetic diseases will be addressed.
I compare it to a "scam" whole body scan my wife and I went for. I had remembered a fast, hi resolution CT scan planned for a public venue like shopping malls. Same equipment, same people, but more modestly advertised. The only real skimp was the radiological report, my doctor just ordered a second opinion on the CT so for us it wasn’t bad. For many people it was a scam. It was not cheap, over a kilo-buck for the both of us (with some negotiation). No insurance was accepted so it was up front, whip out money. All the usual radiological money shots like an aneurysm on the aortic arch, a very common benign issue that will inspire a second CT were found. Since it was my wife's aortic bulge the next CT went through the usual channels. We weren't harmed and we had no illusions over what we signed on the dotted line for. It was eventually shut down because less medically savvy people were out of their depth and for them, it was a rip-off.
This is not a CF test for anybody truly suspecting it. From this perspective, and they don’t misrepresent this, it is a miniscule assay for CF, like three mutations or such, certainly not the 1900 in a full CFTR analysis. The technologies for 23andme or full amplified CFTR analysis are both valid, what we require is CFTR analysis.
Think of the mess most CF families have gone through with sophisticated genetic testing, pioneered around CFTR mutations. First you have CF, then you are a carrier, then CF again and now maybe CRMS. Just what is going to be happening when people get a post card analysis that might suggest Huntington’s disease? I can’t be too angry with technology outstripping the sociology behind its potential effects, it is far from new. It is my generation who made this possible and I am probably far more culpable in broad genetic testing technology than most. In the ten years since this technology was solidified, this exact type of service was predicted with dollar signs in everybody’s eyes. I don’t think it should be promoted by anecdotes, it is a trainwreck in the mail for many people. Have somebody honestly tell their story after finding out they may need a preemptive mastectomy, in the mail on Friday before a long holiday as they always do.
The last time I tried suggesting all genetic testing go through a genetic counselor, I had my ears bobbed by people with horrible experiences. Once again, we are woefully behind with studies that give genetic counselors the tools to understand why and how to counsel better. Even people who understand this may not be wired to take bad news with grace.
Case in point, my wife is a professional scientist and has been in the exam room for many of my CF appointments. I gave her the “Discover Magazine” article “Doorway to a Cure”, generously provided through a link in a recent topic post. It is a very pedestrian, easy to read article for a wide audience of interest, but it describes CF, CF treatment, and a little clever business in finding Kalydeco etc. Most of it went right over her head. She is far from dense and on a second read, had useful comments and questions. Scientists lose perspective of the actual impact of their tireless efforts. When your best friend is a new artificial yeast gene (YAG) and the late night fluorescent buzz is noticeably annoying in the absence of fellow humans, things begin to take on a two dimensional patina. We, having the best intentions, are out of touch with those we might help.
23andme is going to be interesting and worth every bit of $99.
LL
Now 23andme is doing broad genetic screening that catches many important errors like the short panel test for breast cancer perpetrating genes, or if you have family with Huntington's disease. Right now I would call it extravagant because most genetic diseases await success with CF's genetic drugs before most other genetic diseases will be addressed.
I compare it to a "scam" whole body scan my wife and I went for. I had remembered a fast, hi resolution CT scan planned for a public venue like shopping malls. Same equipment, same people, but more modestly advertised. The only real skimp was the radiological report, my doctor just ordered a second opinion on the CT so for us it wasn’t bad. For many people it was a scam. It was not cheap, over a kilo-buck for the both of us (with some negotiation). No insurance was accepted so it was up front, whip out money. All the usual radiological money shots like an aneurysm on the aortic arch, a very common benign issue that will inspire a second CT were found. Since it was my wife's aortic bulge the next CT went through the usual channels. We weren't harmed and we had no illusions over what we signed on the dotted line for. It was eventually shut down because less medically savvy people were out of their depth and for them, it was a rip-off.
This is not a CF test for anybody truly suspecting it. From this perspective, and they don’t misrepresent this, it is a miniscule assay for CF, like three mutations or such, certainly not the 1900 in a full CFTR analysis. The technologies for 23andme or full amplified CFTR analysis are both valid, what we require is CFTR analysis.
Think of the mess most CF families have gone through with sophisticated genetic testing, pioneered around CFTR mutations. First you have CF, then you are a carrier, then CF again and now maybe CRMS. Just what is going to be happening when people get a post card analysis that might suggest Huntington’s disease? I can’t be too angry with technology outstripping the sociology behind its potential effects, it is far from new. It is my generation who made this possible and I am probably far more culpable in broad genetic testing technology than most. In the ten years since this technology was solidified, this exact type of service was predicted with dollar signs in everybody’s eyes. I don’t think it should be promoted by anecdotes, it is a trainwreck in the mail for many people. Have somebody honestly tell their story after finding out they may need a preemptive mastectomy, in the mail on Friday before a long holiday as they always do.
The last time I tried suggesting all genetic testing go through a genetic counselor, I had my ears bobbed by people with horrible experiences. Once again, we are woefully behind with studies that give genetic counselors the tools to understand why and how to counsel better. Even people who understand this may not be wired to take bad news with grace.
Case in point, my wife is a professional scientist and has been in the exam room for many of my CF appointments. I gave her the “Discover Magazine” article “Doorway to a Cure”, generously provided through a link in a recent topic post. It is a very pedestrian, easy to read article for a wide audience of interest, but it describes CF, CF treatment, and a little clever business in finding Kalydeco etc. Most of it went right over her head. She is far from dense and on a second read, had useful comments and questions. Scientists lose perspective of the actual impact of their tireless efforts. When your best friend is a new artificial yeast gene (YAG) and the late night fluorescent buzz is noticeably annoying in the absence of fellow humans, things begin to take on a two dimensional patina. We, having the best intentions, are out of touch with those we might help.
23andme is going to be interesting and worth every bit of $99.
LL
Bailey Vincent
New member
Ok, I decided to test it out! Because I'm a writer (Makeover Momma.com) I'm fortunate to be able to try and write about it- so I'll be sure to share with everyone!
I just find it interesting (my inner nerd loves this concept), and I'm curious what sort of genetics it can even find. I know this is not in lieu of real medical testing [had plenty of that], obviously... but still kind of fascinating, right?
I just find it interesting (my inner nerd loves this concept), and I'm curious what sort of genetics it can even find. I know this is not in lieu of real medical testing [had plenty of that], obviously... but still kind of fascinating, right?
LittleLab4CF
Super Moderator
Honestly? You bet I would like to know so please share.
LL
LL