On Wednesday, July 21, 2010, I will be presenting in front of the Secretary’s Advisory Committee on Human Research Protections (SACHRP), part of the Office for Human Research Protections in the United States Department of Health and Human Services (HHS). The committee is convening this week to address pressing issues in human subjects protections, and I’ve been invited by the SACRHP Chair to discuss emerging ethical issues with Internet-based research. I feel privileged to sit on the panel on “The Internet in Human Subjects Research” with Elizabeth Buchanan, Montana Miller, and John Palfrey, all preeminent experts.
My contribution to the discussion will focus on how Web 2.0 tools, environments, and experiences are creating new conceptual gaps in our understanding of privacy, anonymity/identifiability, consent, and harm. My presentation is titled “Research Ethics in the 2.0 Era:Conceptual Gaps for Ethicists, Researchers, IRBs”, and relies heavily on my critique of the Tastes, Ties, and Time research project and subsequent data release (news coming soon about publication of this critique).
The slides are available below (updated with new version).