My exploration into the vast world of internet research

PRIM&R is pleased to bring you a live post from the first day of the 2011 Advancing Ethical Research Conference and the PRIM&R Blog Squad. The PRIM&R Blog Squad is composed of PRIM&R members who are devoted to blogging prior to, live from, and after our conferences.

Yesterday, I attended Oh, What a Tangled Web We Weave: Regulatory, Ethical, and Technical Challenges in Internet Research and it was seriously good!

My institutional review board (IRB) sees its fair share of SurveyMonkey studies, but Facebook, avatar, and World of Warcraft studies were all new to me. This session applied human subjects regulations to internet research, a topic for which the Office of Human Research Protections (OHRP) has historically provided limited guidance.

As you may know, internet research can refer to two things:  using the internet as a tool for research or using the internet as a medium/locale of research.  It is up to the IRB to decide what is reasonably considered private in chatting, messaging, email, video, voice chat, file sharing, blogging, and discussion groups. It is also the responsibility of the IRB to decide how identifiable the information may be.

Data protections range across nations. For a glimpse at the degree of data protections in different countries, take a look at this map. For instance, did you know that photo sharing can provide the GPS location of the photo along with the date and time the image was taken? So, if you are ever on the run from the law, make sure you’re are not posting road trip pictures on your Facebook account! Overall, this session provided amazing information that will impact my IRB deliberations as I consider the criteria for approval.

Of course, there is still a great deal that is uncertain in internet research. The recent Advanced Notice of Proposed Rulemaking (ANPRM) has many talking. The presenters, Laura Odwazny, Scott Bradner, and Elizabeth Buchanan, discussed the unpopularity of applying Health Insurance Portability and Accountability Act (HIPAA) standards to all information (i.e. not just health information) and the proposed excused categories of research.

At lunch, I informally polled my table:

  • One person had heard of the recent proposed changes, but had not yet read them; 
  • Two people were first-time attendees, so I let them slide; 
  • Two others felt the biospecimens proposals would be difficult; and finally, 
  • One thought that multi-site studies sounded dreamy, but threatened local IRB job security.

Through my conversations on this topic, I think I found two new friends. Perhaps I will connect with them on Facebook, or maybe not considering my idea of privacy may not match that of some researchers studying Facebook profiles of individuals that “like” PRIM&R!