Digital health fiduciaries: protecting user privacy when sharing health data

被引:0
|
作者
Chirag Arora
机构
[1] University of Technology Eindhoven,Section of Philosophy and Ethics, Department of Industrial Engineering & Innovation Sciences
来源
关键词
Health data; Digital health; Privacy; Transparency; Fiduciary law; Fiduciary relationships;
D O I
暂无
中图分类号
学科分类号
摘要
Wearable self-tracking devices capture multidimensional health data and offer several advantages including new ways of facilitating research. However, they also create a conflict between individual interests of avoiding privacy harms, and collective interests of assembling and using large health data sets for public benefits. While some scholars argue for transparency and accountability mechanisms to resolve this conflict, an average user is not adequately equipped to access and process information relating to the consequences of consenting to further uses of her data. As an alternative, this paper argues for fiduciary relationships, which put deliberative demands on digital health data controllers to keep the interests of their data subjects at the forefront as well as cater to the contextual nature of privacy. These deliberative requirements ensure that users can engage in collective participation and share their health data at a lower risk of privacy harms. This paper also proposes a way to balance the flexible and open-ended nature of fiduciary law with the specific nature and scope of fiduciary duties that digital health data controllers should owe to their data subjects.
引用
收藏
页码:181 / 196
页数:15
相关论文
共 50 条
  • [41] Privacy and Data Security in Digital Health: Implications for Family Therapy
    Lockhart, Ezra N. S.
    CONTEMPORARY FAMILY THERAPY, 2025,
  • [42] Poster Abstract: Protecting User Data Privacy with Adversarial Perturbations
    Wang, Ziqi
    Wang, Brian
    Srivastava, Mani
    IPSN'21: PROCEEDINGS OF THE 20TH ACM/IEEE CONFERENCE ON INFORMATION PROCESSING IN SENSOR NETWORKS, 2021, : 386 - 387
  • [43] Mastering data privacy: leveraging K-anonymity for robust health data sharing
    Karagiannis, Stylianos
    Ntantogian, Christoforos
    Magkos, Emmanouil
    Tsohou, Aggeliki
    Ribeiro, Luis Landeiro
    INTERNATIONAL JOURNAL OF INFORMATION SECURITY, 2024, 23 (03) : 2189 - 2201
  • [44] Protecting health data privacy while using residence-based environment and demographic data
    Rodgers, Sarah E.
    Demmler, Joanne C.
    Dsilva, Rohan
    Lyons, Ronan A.
    HEALTH & PLACE, 2012, 18 (02) : 209 - 217
  • [45] Achieving privacy preservation when sharing data for clustering
    Oliveira, SRM
    Zaïane, OR
    SECURE DATA MANAGEMENT, PROCEEDINGS, 2004, 3178 : 67 - 82
  • [46] Privacy and Anonymity Challenges When Collecting Data for Public Health Purposes
    El Emam, Khaled
    Moher, Ester
    JOURNAL OF LAW MEDICINE & ETHICS, 2013, 41 : 37 - 41
  • [47] Privacy protections to encourage use of health-relevant digital data in a learning health system
    Deven McGraw
    Kenneth D. Mandl
    npj Digital Medicine, 4
  • [48] Privacy protections to encourage use of health-relevant digital data in a learning health system
    McGraw, Deven
    Mandl, Kenneth D.
    NPJ DIGITAL MEDICINE, 2021, 4 (01)
  • [49] CyberSec4Europe - Securing and Preserving Privacy Sharing Health Data
    Cortes Carreras, Raquel
    Carlos Perez Baun, Juan
    Villegas Jimenez, Miryam
    ERCIM NEWS, 2023, (133): : 24 - 25
  • [50] Perceptions and Preferences About Granular Data Sharing and Privacy of Behavioral Health Patients
    Soni, Hiral
    Grando, Adela
    Aliste, Marcela P.
    Murcko, Anita
    Todd, Michael
    Mukundan, Madhumita
    Saks, Michael
    Horrow, Caroline
    Sharp, Richard
    Dye, Christy
    Chern, Darwyn
    Whitfield, Mary Jo
    Callesen, Mark
    MEDINFO 2019: HEALTH AND WELLBEING E-NETWORKS FOR ALL, 2019, 264 : 1361 - 1365