Ethical practice in sharing and mining medical data

Journal of Information, Communication and Ethics in Society 19 (1):1-19 (2021)
  Copy   BIBTEX

Abstract

Purpose The purpose of this paper is to review current practice in sharing and mining medical data revealing benefits, costs and ethical issues. Based on stakeholder perspectives and values, the authors create an ethical code to regulate the sharing and mining of medical information. Design/methodology/approach The framework is based on a review of academic, practitioner and legal research. Findings Owing to the inability of current safeguards to protect consumers from risks related to the disclosure of medical information, the authors develop a framework for ethical sharing and mining of medical data, security, transparency, respect, accountability, community and quality, which espouses security, transparency, respect, accountability, community and quality as the basic tenets of ethical data sharing and mining practice. Research limitations/implications The STRACQ framework is an original, previously unpublished contribution that will require modification over time based on discussion and debate within and among the academy, medical community and public policymakers. Social implications The framework for sharing borrows from the Fair Credit Reporting Act, allowing the collection and dissemination of identified medical data but placing strict limitations on use. Following this framework, benefits of shared and mined medical data are freely available with appropriate safeguards for consumer privacy. Originality/value Mandates for adoption of electronic health-care records require an understanding of medical data mining. This paper presents a review of data mining techniques and reasons for engaging in the practice of identifying benefits, costs and ethical issues. The authors create an original framework, STRACQ, for ethical sharing and mining of medical information, allowing knowledge exploration while protecting consumer privacy.

Other Versions

No versions found

Links

PhilArchive

    This entry is not archived by us. If you are the author and have permission from the publisher, we recommend that you archive it. Many publishers automatically grant permission to authors to archive pre-prints. By uploading a copy of your work, you will enable us to better index it, making it easier to find.

    Upload a copy of this work     Papers currently archived: 106,168

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Data Mining in the Context of Legality, Privacy, and Ethics.Amos Okomayin, Tosin Ige & Abosede Kolade - 2023 - International Journal of Research and Innovation in Applied Science 10 (Vll):10-15.
Ethical considerations of using information obtained from online file sharing sites.Aimee van Wynsberghe & Jeroen van der Ham - 2015 - Journal of Information, Communication and Ethics in Society 13 (3/4):256-267.
Sharing personal genetic information: the impact of privacy concern and awareness of benefit.Don Heath, Ali Ardestani & Hamid Nemati - 2016 - Journal of Information, Communication and Ethics in Society 14 (3):288-308.

Analytics

Added to PP
2020-04-18

Downloads
42 (#593,768)

6 months
7 (#614,157)

Historical graph of downloads
How can I increase my downloads?

Citations of this work

Add more citations

References found in this work

Add more references