Jen S. McCabe from Health Management RX shared her genomic results through a nice video. It’s a smart way to present how such a direct-to-consumer genetic company works, but I’m not sure Jen should publish such data.
Here is how she collected the salive sample:
I got a free kit from Navigenics a few months ago, and I shared my experiences, but not the results.
I try to keep you really up-to-date about news and announcements focusing on personalized genetics on Gene Genie, but I must share some other articles with you now.
- 23andMe Research Revolution: “23andMe wants to advance genetic research into diseases that affect countless people, and make healthcare more personalized. The Research Revolution program is a way of kicking off that effort by seeding an inaugural set of communities focused on diseases. These diseases were chosen in part because we have identified pre-existing communities that have developed around them — we are excited to expand this list, and welcome feedback about future additions.”
And as with any expensive technology, there is a concern that the benefits may only be available to those that can afford it, as DTC tests currently run from a few hundred to a few thousand dollars. Yet the bigger divide, Lee suggests, may not be access to sequence information, but access to educational and interpretive information about genetic risk factors—for patients, consumers, and heath care providers alike.
The biggest problem with direct-to-consumer genetic testing is that it’s extremely hard for laypeople (and their doctors) to analyze the results properly. That’s why they need a genetic counselor who can help with the analysis and the interpretation of genomic risk factors even if the majority of these results cannot be used in medical decision-making. I got a test kit from Navigenics a few months ago. I could call their genetic counselor if I need help or I could contact them through e-mail and Twitter. This made me think about the accuracy and speed of the customer services of these companies. According to my experiences, when I asked a question:
- 23andMe replied in less than a day via e-mail. (Update: and via Twitter as well, see this.)
- DecodeMe replied in less than a week via e-mail.
Customer service is more important than anything in this field and if I can call a genetic counselor, why I cannot call them through Skype or have a private chat via videoconferencing (e.g. American Well)? This is an issue where all the companies have to improve a lot…
Blaine Bettinger from the great The Genetic Genealogist blog shared his experiences with us about the genetic testing service of 23andMe. I shared my thoughts with you about the service of Navigenics a few days ago. Now you can compare the two reviews and please do let us know what you think about these services if you are a customer.
A reader (beerbelliesuk) just left a comment on one of my posts. It’s a poem about 23andMe, the Google-sponsored genetic company. I have no idea who wrote it but is quite ironic.
Update: The poem belongs to Helen Wallace who wrote it while she was stuck on a train a few weeks ago.
Psst, you want eternal life?
On Sale Now: from Sergey and his wife.
All you need to do is pay
For them to own your DNA.
In return they’ll give you back
Information that you lack
Genetic risk for this and that:
You won’t know what you’re looking at.
Some of it will be plain wrong
Or else you knew it all along:
But you can bet they’ll make it pay
Now they have your DNA.
If you’re at risk of getting fat
You’ll soon be clicking on an ad:
There’s always something you can buy
To treat you so you will not die.
It’s personalised marketing:
The latest trend, the hottest thing.
If what they tell you isn’t true
Read the disclaimer: more fool you.
Then, when you spend your precious time
Searching journals, all online
The more you look, the more you’ll learn
How long you live depends on what you earn.
Suddenly you’ll understand
The science behind the business plan,
The secret of a longer life:
Oh yes, they have it, Sergey and his wife.
Remind me now, why did you pay
For them to own your DNA?
When you start to think it through,
Shouldn’t they be paying you?
TIME magazine published the complete list of the top 50 best inventions of 2008. The winner is 23andMe, the Google sponsored genetic company that provides SNP genotyping. Spittoon, the official blog of 23andme also covered the subject. While I think their service is important, Medgadget shared some major points with us and I must say they were right. These are the truest words I’ve ever read about direct-to-consumer genetic testing.
We say, TIME was probably sucking up to people whose lives have become a never ending effort to hype things onto the common man. You see, whether you take 23andme’s Anne Wojcicki and her husband Sergei Brin (co-founder of a website Google.com, an advertising agency with no customer service), or 23andme’s investor movie mogul Harvey Weinstein, or Navigenic’s venture capitalist John Doerr, they feel that they are changing the world. But really, considering the hype, aren’t they more interested in making money and elevating themselves to the level of revolutionaries, than furthering medicine and its technology?
Other interesting inventions:
I’ve got a huge backlog now, but will try to keep sharing interesting genetic articles and posts with you regularly. So here is this week’s collection:
- One of the main issues in the blogosphere is the 1000$ genome, the aim is to let everyone access their genomic data for 1000$. We thought we could reach that goal in the next couple of years, but according to Blaine Bettinger’s post, it might be done by the end of 2009.
The Genomic Revolution and the Future of Medicine and Health: A nice lecture about an essential subject
My dear friends, I told you before… You just lost 600$ for being less patient than us. 23andme lowered the price of their service from 999$ to 399$. Even if I still think it’s not worth it, more patients will get access to their genetic background because of the lower barriers. An excerpt from the New York Times report:
The move might touch off a price war in the nascent business. The company’s main competitors, Navigenics and deCODE Genetics, charge about $2,500 and $1,000, respectively.
Mari Baker, chief executive of Navigenics, said the company would not be reactive to what its competitor did, saying that “cheapest wasn’t always best.” She expressed some surprise at 23andMe’s new price, saying, “I know what our costs are. They are many times greater than that.”
Read more about it on the blog of Steve Murphy, our gene sherpa.
Months before, Steve and I, we both said it would happen. And now look at this announcement:
The California Department of Public Health has issued notices to 13 laboratories to cease and desist performing genetic testing for California residents until the laboratories meet the requirements specified in state law. Any laboratory offering genetic tests to California residents must be licensed as a clinical laboratory in California. The tests must be ordered by a licensed physician and validated. Tests for paternity and genealogy are not subject to these laws.
Just an example from one of the letters:
23andMe must immediately Cease and Desist offering genetic tests to citizens of California until a license has been issued by the Department. Any advertising for genetic services, whether it be in written word or by internet, must clearly state that this testing is prohibited for California residents. 23andMe shall not take any unsolicited requests for genetic tests from California residents.
Genetic tests are not funny or interesting products, but tools in the hands of qualified physicians who know what genomic medicine is about.
More on this:
23andMe, one of the (if not the) most famous companies focusing on personalized genetics, presented a slideshow today in Second Life in the latest session of the Scifoo Lives On series. The speakers were Erin Davis (science writer) and Joyce Tung (human geneticist). The title was 23andMe and 23andWe. Details here.
Live coverage starts (Pacific Time):
- 9:30: The poster is up, everything seems to be ready. The first speaker, Erin, just arrived. The other residents are having a rest…
- 9:40: The audience is slowly bigger and bigger. You can also follow us on Twitter. Our speaker, Joyce, just arrived. Here are both speakers:
- 9:55: A few more people and some weird creatures arrived.
- 9:58: Here is the crowd. We are really thankful to Second Nature for the place.
- 10:05: I launched the session.
Welcome on Second Nature island!
Today’s Scifoo lives on session will feature 23andMe, a privately held biotech company focusing on personalized genetics. Two members of their editorial board will present a slideshow about their service, research and the future plans. Please welcome Erin Cline Davis, Ph.D. (SL: Luttibelle Eames ) who received her Ph.D. in Molecular and Cellular Physiology at the Stanford University School of Medicine.
and Joyce Tung, Ph.D., Human Geneticist (SL: Joyce Footman ) who pursued a Ph.D. in Genetics at the University of California, San Francisco. Please feel free to ask them questions after the presentation. Thank you!
- 10:10: They started the presentation (excerpts):
- 10:11: The SNP chip analyzes about 600,000 specific points in the genome that are known to vary. It’s important to understand that this is NOT sequencing, which would look at every single point in the genome.
- 10:13: Samples are analyzed using an Illumina HumanHap550+ BeadChip plus a SNP chip custom designed by 23andMe scientists. The 23andMe custom SNP chip allows us to analyze the Y chromosome and mitochondrial genome (for paternal and maternal ancestry purposes) in much greater depth than conventional SNP chips.
- 10:16: While they’re talking about Gene Journal, the audience is growing hugely…
- 10:18: Your DNA tells you more than just what your genetics say about certain physical traits (such as ear wax type or lactose tolerance) or what conditions you might be at risk for — it can also tell you about where your ancestors came from.
- 10:21: Sharing your genome is really as simple as sending an invitation. Because we understand that people may have different comfort levels when it comes to sharing their genetic information, we offer two levels of sharing to choose from.
- 10:24: Here are our two speakers, Joyce and Erin:
- 10:27: We now turn to 23andWe: 23andWe is consumer enabled research or as we like to call it, Research 2.0.
- 10:31: It’s important to remember that a version of a SNP that is associated with a condition is not necessarily causing the condition. It may just be a marker that is linked to the truly causative DNA variation.
- 10:32: Genome wide association studies are in the focus as you can see:
- 10:35: 23andWe is a new way of doing research that will bring researchers and individuals together in a dynamic, web-based environment. By removing the obstacles of geography and the cost of maintaining multiple study sites, 23andWe hopes to enable large studies that would otherwise be infeasible. 23andWe is a serious research enterprise.
- 10:38: The process: research proposal, data collection, data analysis, publication…
- 10:41: We’re very excited about the potential for this project to show how the multimedia capabilities of the web can really enhance health research… We think 23andMe is a first step towards the concept of personalized medicine. We are now able to give customers access to technology that was not that long ago restricted to specialized laboratories. People can actually see what the latest research might mean for them.
- 10:43: It’s time for questions: How will you get Informed Consents from every person for every study? Who actually owns the DNA results and samples…..?
- 10:45: That’s a hard one… are you excited/concerned that you are providing the tools for any group of people to get together and self-test on “snake oil” compounds ?
- 10:48: More and more hard questions… Erin must type fast: we are as concerned as you guys are about privacy. we really have no interest in violating your trust. our business only works if we can maintain your privacy.
- 10:52: Strange creatures, sometimes strange questions: These tools allow for the other extreme, that is a group of people getting together on their own without medical assistance to self test and analyze. Will this be a problem ?
- 10:57: Joyce: In the future, we hope to use some of the data from our chip to provide information about copy number variation.
- 10:59: The question of the day award goes to… and as also Google is involved (is that right?) how long will it take until my search habits will be matched up with my genome?
- 11:01: Wow, that sounds great: We will be encouraging our users to submit ideas for research studies that we can conduct.
- 11:04: It’s over! The presentation was fantastic, Erin and Joyce answered all the questions. Thank you, 23andMe for the presentation and Second Nature for the island and place. See you next time!
Live coverage ends…