The Internet has opened huge number of possibilities for information and communication. As the medium evolves, clever people are continually finding new applications. But as soon as someone comes up with a new way of using the web, we can be sure that “privacy advocates” will quickly be along to warn against the “dangers” of this application.
One relatively new way in which people are using the Internet is that patients with particular medical conditions are able to find and communicate with each other. A recent New York Times article has addressed this type of communication: “When Patients Meet Online, Are There Side Effects?”, Natasha Singer, May 28, 2010.
Some of the article is positive and discusses the benefits of such information sharing: “Members can seek out patients of the same age, sex, and disease progression, whose profiles are displayed on the site, to see which drugs or doses worked for them. Drug makers can pinpoint subgroups — say, severely depressed middle-aged men — who reported the greatest improvement on a particular medication.”
But as is common with any article about information on the internet, the article quickly begins discussing what it views as negatives. Even the title references “Side Effects” and not benefits. Moreover, many of these sites have various connections with drug makers. To the Times, this raises some questions:
“But pharmaceutical crowd-sourcing also raises important questions about the trade-off between the benefits of information sharing and the risk of patient exploitation.
“Some people share their health information for the sake of the greater good. Yet they typically have no way of knowing whether their health profiles contribute directly to the development of more effective treatments — or are simply mined to create more effective drug marketing.”
These two paragraphs contain lots of hidden assumptions. By patient “exploitation,” it appears that the author means selling patients drugs, but selling someone something that they want and that may provide benefits is not “exploitation.” Moreover, marketing is contrasted with “development of more effective treatments,” implying that one is good but the other bad. But creation of more effective drug marketing generally means finding out ways in which to better match patients and treatments – a socially useful activity.
Of course, one of usual suspects among privacy advocates is also quoted: “’We are talking about a digital pharma stealth economy that is emerging,’ says Jeff Chester, the director of the Center for Digital Democracy, a nonprofit group that works to safeguard user privacy.” The Times sees no need to quote anyone who takes a different view on information and privacy. Apparently, one side is enough to represent.
The FDA also appears to be concerned about this “digital pharma stealth economy” and has been looking into the drug advertising market. According to the article, the FDA “is still developing a policy on drug marketing through social media.” We can only hope that the FDA does not stifle this very useful set of tools because of the fears of the privacy advocates and others with similar beliefs.