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. 2017 Sep 11;26(1):38–52. doi: 10.15265/IY-2017-007

Table 1.

General principles of informatics ethics (adopted from the IMIA Code of Ethics for Health Information Professionals[ 58 ]) and their impact on data reuse

Principles Definitions Impact on Reuse
Principle of Information-Privacy and Disposition The fundamental right of a person to privacy and with it the right to control data about her/himself including the collection, storage, transmission, access, modification, disposition, and most importantly use of the data.
  • Reasonable protection against any disclosure of patient data.

  • Patient right to have data expunged or modified.

Principle of Openness The collection, storage, transmission, access, modification, disposition, and use of a person’s data must be disclosed to the person in an appropriate and timely fashion.
  • Required notification of patients (and raising of awareness) that their data are collected and stored, transmitted, modified, and reused.

Principle of Security Collected data must be protected by all reasonable and appropriate measures against loss, degradation, unauthorized access or destruction, use, manipulation, modification, or transmission.
  • Security for systems allowing secondary use of data must be at or above the level of security provided for systems designed for the original use.

Principle of the Least Intrusive Alternative Any infringement of privacy rights or the individual’s right to control her/his data may only occur in the least intrusive fashion and with a minimum of interference with the rights of the affected person.
  • Required analysis of planned reuse of data to avoid infringement or more than minimal interference.

Principle of Accountability Any infringement of privacy rights or of the individual’s right to control her/his data must be justified to the affected person in a timely manner and in an appropriate fashion.
  • Violations of the above principles require the individuals working with reused data (not the primary data collectors) to disclose such events.