So, apparently I'm a complete and total sadomasochist who likes listen to health officials discourse on compliance issues with phlebotomy programs and CLS (what is that, even?) certification. I've been sitting here listening to the conference call of California health department conference call that Alexis Madrigal mentioned in his Wired post on the state's stance against direct-to-consumer genetic testing companies like 23andMe. I was after some sense of the thinking behind the position. My takeaway: California's health officials firmly believe that consumers just aren't capable of handling knowledge of their DNA unless it's mediated by a medical professional. Here's the flavor of the call from some notes I jotted down. The speaker is Dr. Karen Nickel, the head of California's laboratory field services program:

Genetic tests cannot be self ordered. [Direct-to-consumer genetic testing] puts us between a rock and a hard place...We're concerned about genetic businesses ordering tests from licensed labs without a physicians order...We've been dealing with this for six months now. We have investigated and this week sent cease-and-desist orders to thirteen of them for violating state law. This is very serious. We have consulted with legal and have full department support for this...We started this week no longer tolerating direct-to-consumer genetic testing in California.

The public demand for access has created the 'worried well.' We need to clarify diagnostic vs. predictive reports. Many of these businesses will give 67% chance of colon cancer, 27% chance of this or that. Once they get the results they don't know what to do about it. So that's the state perspective. [Emphasis added.]

23andMe, genetics, social genomics

To me, this reflects as much a cultural disagreement as a legal or regulatory one. That is, there is the assumption in the states' letters that, because genetic information has medical implications, the dissemination of this information must fall under their jurisdiction.

But there are, in fact, all sorts of areas in life that have medical implications that we don't consider the province of government -- a pregnancy test, most obviously. We neither want nor assume that doctors should have a gatekeeper role in establishing whether we are or are not pregnant, nor do we look to the state to protect us from that information. Pregnancy is a part of life, and it has all sorts of implications and ramifications. So too with DNA.

Getting tested for the gene of a hereditary disease with no cure is and should be a hugely complicated decision, one with implications beyond one's own self. It can mean "outing" other family members, who may have no desire to learn if they will get the disease. It can mean any number of problems with one's health insurance (no doubt a big reason why fewer than 3 percent of at-risk Americans get tested for HD, as opposed to 20 percent of Canadians who might have the gene).