Legal and ethical considerations: step 1b in building a health web observatory

Marie Joan Kristine Gloria, John S. Erickson, Joanne S. Luciano, Dominic DiFranzo, Deborah L. McGuinness

Abstract: This paper explores the impact of health information technologies, including the Web, on society and advocates for the development of a Health Web Observatory (HWO) to collect, store and analyze new sources of health information. The paper begins with a high-level literature review from across domains to demonstrate the need for a multi-disciplinary pursuit when building web observatories. For as researchers in the social sciences and legal domains have highlighted, data carries assumptions of power, identity, governance, etc., which should not be overlooked. The paper then recommends example legal and ethical questions to consider when building any health web observatory. The goal is to insert social and regulatory concerns much earlier into the WO methodology