Abstract
In this chapter, we will discuss three key ethical issues related to data collected in stakeholder-engaged research: (1) data ownership, (2) deciding how data are used, and (3) deciding what is published. We begin with the legal and regulatory policies of universities and sponsors around data ownership and data sharing. We then discuss the role of principal investigator(s) in a study and/or partnership leaders as data stewards for the development and implementation of partnership practices for data decision-making. We examine the implications of funding and timing since many decisions related to data use and sharing often happen after the project has ended. Finally, we discuss the roles and responsibilities of different stakeholders (e.g., funder, researcher, and nonacademic partner) and offer lessons to be learned and resources for partnerships.
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Goodman, M.S., Pierce, K.A., DuBois, J.M., Thompson, V.S. (2023). Data Decisions and Ethics: The Case of Stakeholder-Engaged Research. In: Anderson, E.E. (eds) Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Philosophy and Medicine, vol 146. Springer, Cham. https://doi.org/10.1007/978-3-031-40379-8_16
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