Health law scholars highlight challenges of keeping research participant information private

New technologies may require consent process to evolve, say Caulfield, Murdoch and Ogbogu

21 July 2020

Health law professors Timothy Caulfield and Ubaka Ogbogu, and research associate Blake Murdoch, are co-authors of a new paper about the challenges of keeping patient and research participant information private and confidential in a world where anonymity can no longer be guaranteed in research.

In Research, Digital Health Information and Promises of Privacy: Revisiting the Issue of Consent they write that, “Growth in sophisticated information technologies that can facilitate data breaches, along with increasing collection and sharing of digitized health information, may make it more difficult for researchers, public research institutions and private companies to maintain this obligation” and ask, “...given the shifting information technology landscape, to what degree does the consent process need to evolve, if at all, to reflect emerging privacy and data protection concerns?”

The paper, published in the Canadian Journal of Bioethics, highlights several areas that warrant immediate attention, including temerging privacy challenges associated with biomedical research; privacy and public perceptions; and consent and reconsent.