Biomedical Research Ethics 2.0: MySpace and Pediatrics

Much of the excitement about the future of personalized medicine revolves around the creation of consumer managed, personal health records. To acquire a measure of the anticipation, revisit the blogging blitz inspired the by implicit competition between Microsoft's HealthVault and Google Health (see, for example, David Hamilton's reviews of HealthVault at Venture Beat and Bertalan Meskó's coverage of Google Health at ScienceRoll). Although most are interested in the potential these Web 2.0 developments hold for enhanced, individualized health care, others have speculated that personal health information may become a more common feature of social-networking sites. The big names in social-networking (MySpace and Facebook) already host user-generated groups for individuals with shared health conditions; others, such as iMedix and MyOpenCare (for more examples visit Medicine 2.0) have entered the market with an obvious interest in health 2.0 and shared, personal medical records.

Although many worry about how advertisers might data mine personal information to target potential customers, these networks also offer a new source of information for medical research data and research recruitment. With this in mind, "Research Ethics in the MySpace Era" (Moreno MA, Fost NC, Christakis DA. Pediatrics 2008;121;157-161. PMID:18166570) is a very timely publication. The authors explore the ethical implications of using MySpace profiles as: a source for observational research (potentially exempt from IRB oversight); a tool for research recruitment; and a platform for health intervention studies. Although the authors are particularly interested in the risks and benefits of social-networking sites for pediatric research, the investigation could easily be generalized for research with adult users. The authors, however, do not address the ethical implications of using shared, genetic information. Imagine a day in which users update their profiles and replace zodiac signs with significant genetic biomarkers. How would this "shared" information challenge the ethical framework proposed by Moreno, Fost and Christakis? - J.O.