TY - JOUR
T1 - Passive data collection and use in healthcare
T2 - A systematic review of ethical issues
AU - Maher, Nicole A.
AU - Senders, Joeky T.
AU - Hulsbergen, Alexander F.C.
AU - Lamba, Nayan
AU - Parker, Michael
AU - Onnela, Jukka Pekka
AU - Bredenoord, Annelien L.
AU - Smith, Timothy R.
AU - Broekman, Marike L.D.
N1 - Copyright © 2019 Elsevier B.V. All rights reserved.
PY - 2019/9/1
Y1 - 2019/9/1
N2 - Introduction: Passive data refers to data generated without the active participation of the subject. This includes data from global positioning systems and accelerometers or metadata on phone call and text activity. Although the potential healthcare applications are far-reaching, passive data raises numerous ethical challenges. Materials and Methods: We performed a systematic review to identify all ethical concerns, normative standpoints, and underlying arguments related to the use of passive data in healthcare. Results: Among the various challenges discussed in the ethical literature, informational privacy, informed consent, and data security were the primary focus of the current debate. Other topics of discussion were the evaluation and regulation of products, equity in access, vulnerable patient groups, ownership, and secondary use. Conclusion: No clear ethical framework has been established that stimulates passive data-driven innovation while protecting patient integrity. The consensus in the ethical literature, as well as the parallels with similar concerns and solutions in other fields, can lay a foundation for the construction of an ethical framework. The future debate should focus on conflicts between two or more ethical, technical, or clinical values to ensure a safe and effective implementation of passive data in healthcare.
AB - Introduction: Passive data refers to data generated without the active participation of the subject. This includes data from global positioning systems and accelerometers or metadata on phone call and text activity. Although the potential healthcare applications are far-reaching, passive data raises numerous ethical challenges. Materials and Methods: We performed a systematic review to identify all ethical concerns, normative standpoints, and underlying arguments related to the use of passive data in healthcare. Results: Among the various challenges discussed in the ethical literature, informational privacy, informed consent, and data security were the primary focus of the current debate. Other topics of discussion were the evaluation and regulation of products, equity in access, vulnerable patient groups, ownership, and secondary use. Conclusion: No clear ethical framework has been established that stimulates passive data-driven innovation while protecting patient integrity. The consensus in the ethical literature, as well as the parallels with similar concerns and solutions in other fields, can lay a foundation for the construction of an ethical framework. The future debate should focus on conflicts between two or more ethical, technical, or clinical values to ensure a safe and effective implementation of passive data in healthcare.
KW - Ethics
KW - Healthcare
KW - Passive data
KW - Personal digital devices
KW - Smartphone
KW - Systema
KW - tic review
KW - Ownership
KW - Informed Consent/ethics
KW - Consensus
KW - Data Collection/ethics
KW - Privacy
KW - Delivery of Health Care/ethics
UR - http://www.scopus.com/inward/record.url?scp=85067863247&partnerID=8YFLogxK
U2 - 10.1016/j.ijmedinf.2019.06.015
DO - 10.1016/j.ijmedinf.2019.06.015
M3 - Review article
C2 - 31445262
AN - SCOPUS:85067863247
SN - 1386-5056
VL - 129
SP - 242
EP - 247
JO - International Journal of Medical Informatics
JF - International Journal of Medical Informatics
ER -