"It's Only Information"
Finally, a word about regulating information-based services. Some have expressed shock at the idea that government might want to regulate a service like genetic testing, a service that, after all, merely provides information. Of course, the idea that test results are “merely information” is far from reassuring.
Information can obviously be dangerous in many ways. This is not to say that the kind of information produced by a whole-genome scan is particularly dangerous; it’s just a reminder that information-based services are not inherently risk-free.
In part, the worry here is related to the difference between data and information. After all, the reason that the results of tests by a company like Navigenics or 23andMe are worth paying for is that those companies don’t just give customers a series of C’s, G’s, A’s and T’s. They also provide some level of interpretation. And such interpretation is an inherently normative process—a process of deciding how to interpret the data, and which information, at which level of complexity, ought to be delivered to the paying customer. There really is nothing “mere” about information in a context like this.
Another perspective from which to criticize regulation of DTC genetic tests points out that such regulations erect barriers to individuals gaining information that is, after all, about them. How can government deny me information about myself? But it’s critical to see that denying a company the unfettered right to sell something is importantly different from denying consumers the right to buy it. It’s also important to see that sometimes we put regulations in place not to because every consumer needs protection but because some do. Not all such regulations are justifiable; but surely at least some are, and the debate needs to be conducted in recognition of that fact.