Like many people, I’m intrigued by the 23andme drama. Here’s a quote I scribbled down at Health Foo:
The data and genomics revolution is akin to the print revolution. Hundreds of years ago, peasants looked at this converted wine press and asked why we need more Bibles when nobody can read. The printing press triggered a literacy spiral, with both good and bad publications coming from it. The net result was worth it. That’s the story we need to tell.
For more, see: Gutenberg, Genomics, and the Literacy/Literature Spiral, by Tom Munnecke. Please note that I’m not endorsing his view. I’m interested in it and would love to hear what other people think.
If you’re just tuning in, I’ve found the following articles helpful:
- The FDA vs. Personal Genetic Testing, by David Dobbs
- 23andstupid: Is 23andme self-destructing? by Matthew Herper
- Matthew Katz on 23andMe: “Return to Sender, Genome Unknown: Seven Reasons I Will Return My Personal Genome Kit”
Thanks for starting the conversation on 23andMe, Susannah. Reading through the articles many of the arguments can be boiled down to “The FDA stands in the way of inexorable progress” or “It’s a good thing and you should be skeptical of 23andMe.”
A couple of points I haven’t come across yet would be:
1) This discussion has very little to do with 23andMe as a company. It really doesn’t matter if you like them or dislike them, the real issue is whether consumers have a right to work directly with ANY genetics service company without the FDA as intermediary.
2) The FDA has the power by law to regulate companies that claim to offer medical diagnoses. IMHO, they are within their purview on this decision. So, instead of focusing on the FDA’s actions, we should turn our attention to a set of laws that only apply to medical interactions. Why do companies offering medical diagnostics have to abide by a special set of laws that don’t apply to other product and service providers? If they’re good laws, then shouldn’t they apply to all interactions? As it is now, we are in this discriminatory place where you can sign a waiver and participate in an extreme sport, but 23andMe can’t show you your genetic predispositions. How many extreme sports would we have if they all had to be FDA approved? I think equality should be a part of the discussion.
As an ePatient advocate, I think that the more value patients control, the better off they are. As far as I can tell, patients control less value (have fewer choices) as a consequence of not being able to directly contract with genetic services companies.
Thanks, Brett! Great questions. I haven’t done the research, but I do think there are other companies who offer similar services. They are much less well-known (few have the marketing power that 23andme enjoys).
As a researcher who studied the social impact of the internet as it emerged — another Gutenberg moment — I am looking for ways to study the emergence of personal genomics. Ideas welcome!
Yes, that’s right (about 23andMe’s marketing muscle). They’ve had many competitors over the years, but are pulling ahead for now: http://www.quora.com/23andMe/Who-are-23andMes-competitors
At least in my own patient community several us used 23andMe to do our genotyping, and then we downloaded the information into spreadsheet analysis tools. We didn’t come up with anything, but it’s still early and the tools are rudimentary. I’ve heard it compared to the early days of the semiconductor market — tools were manual and early integrated circuits had very limited utility. Also hoping genomics will be a new Gutenberg moment.
I’ll add another article to the reading list:
23 and You: Does that commercial DNA test you just bought violate somebody else’s privacy? by Virginia Hughes in Matter
Thought this Marginal Revolution post was informative:
http://marginalrevolution.com/marginalrevolution/2013/11/our-dna-our-selves.html
Since this blog is my outboard memory, I’ll add a link to Leonard Kish’s article:
The Social Conquest of Medicine: The 23andMe and Conflict
It’s more than worth a click.