Federal policies on human subjects research have performed a near‐about face. In the 1970s, policies were motivated chiefly by a belief that subjects needed protection from the harms and risks of research. Now the driving concern is that patients, and the populations they represent, need access to the benefits of research.

The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...) business ventures that market the science of the personal genome illustrates the new trend in collaborative science. In addition to fostering a consumer empowerment movement, it promotes the trend of democratizing information—openly sharing of data with all interested parties, not just the biomedical researcher—for the purposes of pooling data (increasing statistical power) and escalating the innovation process. This target article discusses the need for new approaches to studying DTC genomics using social network analysis to identify the impact of obtaining, sharing, and using PGI. As a locus of biosociality, DTC personal genomics forges social relationships based on beliefs of common genetic susceptibility that links risk, disease, and group identity. Ethical issues related to the reframing of DTC personal genomic consumers as advocates and research subjects and the creation of new social formations around health research may be identified through social network analysis. (shrink)

Federal policies on human subjects research have undergone a progressive transformation. In the early decades of the twentieth century, federal policies largely relied on the discretion of investigators to decide when and how to conduct research. This approach gradually gave way to policies that augmented investigator discretion with externally imposed protections. We may now be entering an era of even more stringent external protections. Whether the new policies effectively absolve investigators of personal responsibility for conducting ethical research, and whether it (...) is wise to do so, remains to be seen. (shrink)

The rapid emergence and exploding usage of online social networking forums, which are frequented by millions, present clinicians with new ethical and professional challenges. Particularly among a younger generation of physicians and patients, the use of online social networking forums has become widespread. In this article, we discuss ethical challenges facing the patient–doctor relationship as a result of the growing use of online social networking forums. We draw upon one heavily used and highly trafficked forum, Facebook, to illustrate the elements (...) of these online environments and the ethical challenges peculiar to their novel form of exchange. Finally, we present guidelines for clinicians to negotiate responsibly and professionally their possible uses of these social forums. (shrink)

The rapid emergence and exploding usage of online social networking forums, which are frequented by millions, present clinicians with new ethical and professional challenges. Particularly among a younger generation of physicians and patients, the use of online social networking forums has become widespread. In this article, we discuss ethical challenges facing the patient–doctor relationship as a result of the growing use of online social networking forums. We draw upon one heavily used and highly trafficked forum, Facebook, to illustrate the elements (...) of these online environments and the ethical challenges peculiar to their novel form of exchange. Finally, we present guidelines for clinicians to negotiate responsibly and professionally their possible uses of these social forums. (shrink)