D04 - When Institutional Research and Corporate Worlds Collide: The Impact of Corporate Collaborations in Data Research

There is a growing trend for research institutions to collaborate with corporations. These collaborations benefit the institutions and corporations by providing access to data they may not previously have had. But, to what extent do they benefit society and the individuals whose data is being used? Sharing personally identifiable data across organizations to facilitate research can face significant legal, ethical, and political challenges. Most states do not have comprehensive privacy laws, therefore investigators and IRBs must trust that companies did their due diligence and obtained their data in an ethical manner and have permissions and safeguards in place for sharing of data. Privacy concerns and potential participant harms exist about the collection and sharing of personally identifiable data. Proposed policy solutions have ranged from requiring informed consent from every individual to opt-out provisions to complete de-identification of all data used for research. This session will discuss the challenges and solutions various institutions and organizations face in order to conduct collaborative data research in an ethical and lawful manner. This session will take place in Zoom meeting. The use of attendee video is encouraged for participation and interaction with your peers.

HANDOUT NOTE: Speakers will reference the NAS Study on Fostering Responsible Computing Research. Information on that study can be found on the NAS website here.