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The Ethical Use of Biomedical Big Data: Shifting from a Consent Model to an Agreement Model

  • Korean Journal of Medical Ethics
  • Abbr : 의료윤리
  • 2019, 22(1), pp.1-19
  • DOI : 10.35301/ksme.2019.22.1.1
  • Publisher : The Korean Society For Medical Ethics
  • Research Area : Medicine and Pharmacy > General Medicine
  • Received : February 8, 2019
  • Accepted : March 11, 2019
  • Published : March 31, 2019

Kwangsu Mok ORD ID 1

1서울시립대학교

Accredited

ABSTRACT

The purpose of this paper is to examine how biomedical big data might be used in an ethically appropriate way. Biomedical big data is currently expected to create tremendous economic value as well as social value. For this reason there is an active debate among biomedical ethicists about which model of consent is most appropriate and efficient in this context. At first glance, the model of dynamic consent seems to be both justifiable and feasible, not only because it is based on the spirit of informed consent, but also because it allows for an additional process of consent through on-line platforms. However, it is doubtful that this model could be used in the context of biomedical big data since it is vulnerable to privacy protection and insensitive to ownership issues. Therefore, I argue that the most appropriate model of consent is an agreement model, which can reflect a fair distribution of the benefits from the use of biomedical big data and the privacy risk management. This agreement model not only promotes the autonomy of information givers, but also facilitates the long-term sustainable use of biomedical big data.

Citation status

* References for papers published after 2022 are currently being built.

This paper was written with support from the National Research Foundation of Korea.