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Article
Protecting Research Data of Publicly Revealing Participants
Journal of Law and the Biosciences
  • Ellen Clayton, Vanderbilt University Law School
  • B. A. Malin, Center for Excellance in ELSI Research
  • Kyle J. McKibbin, Vanderbilt University Law School
Document Type
Article
Publication Date
1-1-2021
Keywords
  • personal data,
  • research,
  • privacy,
  • regulation
Abstract

Biomedical researchers collect large amounts of personal data about individuals, which are frequently shared with repositories and an array of users. Typically, research data holders implement measures to protect participants’ identities and unique attributes from unauthorized disclosure. These measures, however, can be less effective if people disclose their participation in a research study, which they may do for many reasons. Even so, the people who provide these data for research often understandably expect that their privacy will be protected. We discuss the particular challenges posed by self-disclosure and identify various steps that researchers should take to protect data in these cases to protect both the individuals and the research enterprise.

Citation Information
Ellen Clayton, B. A. Malin and Kyle J. McKibbin. "Protecting Research Data of Publicly Revealing Participants" Journal of Law and the Biosciences Vol. 8 Iss. 2 (2021) p. 1 ISSN: 2053-9711
Available at: http://works.bepress.com/ellen-clayton/32/