I am thrilled to be selected as one of the inaugural Center for Technology, Society & Policy (CTSP) Fellows for 2015-2016 alongside collaborator Dr. Anna Lauren Hoffmann. Thanks to the funding and support from CTSP and the Center for Long-Term Cybersecurity (CLTC), we will be pursing a project combining our mutual interest and expertise in the philosophy, ethics, and policy surrounding informed consent practices and the implications for human subject research in the age of big “things”: data, devices, and platforms. You can read more about our fellow fellows here.
The Value of Respect: Reclaiming the Philosophical and Political Foundations of Informed Consent for the Era of Big “Things”
The proliferation of sensors, social networks, and massive data repositories presents an unprecedented opportunity to study human behavior. But this opportunity poses new challenges to the protection of individuals and groups by respecting privacy and autonomy, ensuring data security, and considering unforeseen consequences. Organizations have been left with research ethics frameworks and legacy consent processes that are poorly suited for modern data analyses and extended timescales. By marrying legal and policy analysis of informed consent with careful explication of respect itself, we plan to develop a penetrating discussion of 1) the ideal of respect for persons and 2) how informed consent has, at various point in its development, sought to operationalize this ideal in various contexts. Foregrounding the connection between respect and informed consent—and critically interrogating both—is, we argue, an integral step towards the development of a 21st century research ethic and actionable policy recommendations.