Paternalism at the state level and the definition of “advice”

Following up on an earlier post, The New York Times jumps in with more about California (and New York before it) shutting down personal genomics companies, including this curious definition of advice:

“We think if you’re telling people you have increased risk of adverse health effects, that’s medical advice,” said Ann Willey, director of the office of laboratory policy and planning at the New York State Department of Health.

The dictionary confirmed my suspicion that advice refers to “guidance or recommendatios concerning prudent future action,” which doesn’t coincide with telling people they have increased risk for a disease. If they told you to take medication based on that risk, it would most certainly be advice. But as far as I know, the extent of the advice given by these companies is to consult a doctor for…advice.

As in the earlier post, the health department in California continues to sound nutty:

“We started this week by no longer tolerating direct-to-consumer genetic testing in California,” Karen L. Nickel, chief of laboratory field services for the state health department, said during a June 13 meeting of a state advisory committee on clinical laboratories.

We will not tolerate it! These tests are a scourge upon our society! The collapse of the housing loan market, high gas prices, and the “great trouble or suffering” brought on by this beast that preys on those with an excess of disposable income. Someone has to save these people who have $1000 to spare on self-curiosity! And the poor millionaires spending $350,000 to get their genome sequenced by Knome. Won’t someone think of the millionaires!?

I wish I still lived in California, because then I would know someone was watching out for me.

For the curious, the letters sent to the individual companies can be found here, sadly they aren’t any more insightful than the comments to the press. But speaking of scourge—the notices are all Microsoft Word files.

One interesting tidbit closing out the Times article:

Dr. Hudson [director of the Genetics and Public Policy Center at Johns Hopkins University] said it was “not surprising that the states are stepping in, in an effort to protect consumers, because there has been a total absence of federal leadership.” She said that if the federal government assured tests were valid, “paternalistic” state laws could be relaxed “to account for smart, savvy consumers” intent on playing a greater role in their own health care.

It’s not clear whether this person is just making a trivial dig at the federal government
or whether this is the root of the problem. In the previous paragraph she’s being flippant about “Genes R Us” so it might be just a swipe, but it’s an interesting point nonetheless.

Thursday, June 26, 2008 | genetics, government, privacy, science  

Visualizing Data Book CoverVisualizing Data is my book about computational information design. It covers the path from raw data to how we understand it, detailing how to begin with a set of numbers and produce images or software that lets you view and interact with information. Unlike nearly all books in this field, it is a hands-on guide intended for people who want to learn how to actually build a data visualization.

The text was published by O’Reilly in December 2007 and can be found at Amazon and elsewhere. Amazon also has an edition for the Kindle, for people who aren’t into the dead tree thing. (Proceeds from Amazon links found on this page are used to pay my web hosting bill.)

Examples for the book can be found here.

The book covers ideas found in my Ph.D. dissertation, which is basis for Chapter 1. The next chapter is an extremely brief introduction to Processing, which is used for the examples. Next is (chapter 3) is a simple mapping project to place data points on a map of the United States. Of course, the idea is not that lots of people want to visualize data for each of 50 states. Instead, it’s a jumping off point for learning how to lay out data spatially.

The chapters that follow cover six more projects, such as salary vs. performance (Chapter 5), zipdecode (Chapter 6), followed by more advanced topics dealing with trees, treemaps, hierarchies, and recursion (Chapter 7), plus graphs and networks (Chapter 8).

This site is used for follow-up code and writing about related topics.