Ethical sharing of health data in online platforms – which values should be considered?

Research output: Contribution to journal › Journal article › Research › peer-review

Standard

Ethical sharing of health data in online platforms – which values should be considered? / Riso, Brigida ; Tupasela, Aaro Mikael; Vears, Danya; Felzmann, Heike; Cockbain, Julian ; Loi, Michele; Kongsholm, Nana Cecilie Halmsted; Zullo, Silvia ; Rakic, Vojin.

In: Life Sciences, Society and Policy, Vol. 13, No. 12, 2017.

Research output: Contribution to journal › Journal article › Research › peer-review

Harvard

Riso, B, Tupasela, AM, Vears, D, Felzmann, H, Cockbain, J, Loi, M, Kongsholm, NCH, Zullo, S & Rakic, V 2017, 'Ethical sharing of health data in online platforms – which values should be considered?', Life Sciences, Society and Policy, vol. 13, no. 12. https://doi.org/10.1186/s40504-017-0060-z

APA

Riso, B., Tupasela, A. M., Vears, D., Felzmann, H., Cockbain, J., Loi, M., Kongsholm, N. C. H., Zullo, S., & Rakic, V. (2017). Ethical sharing of health data in online platforms – which values should be considered? Life Sciences, Society and Policy, 13(12). https://doi.org/10.1186/s40504-017-0060-z

Vancouver

Riso B, Tupasela AM, Vears D, Felzmann H, Cockbain J, Loi M et al. Ethical sharing of health data in online platforms – which values should be considered? Life Sciences, Society and Policy. 2017;13(12). https://doi.org/10.1186/s40504-017-0060-z

Author

Riso, Brigida ; Tupasela, Aaro Mikael ; Vears, Danya ; Felzmann, Heike ; Cockbain, Julian ; Loi, Michele ; Kongsholm, Nana Cecilie Halmsted ; Zullo, Silvia ; Rakic, Vojin. / Ethical sharing of health data in online platforms – which values should be considered?. In: Life Sciences, Society and Policy. 2017 ; Vol. 13, No. 12.

Bibtex

@article{c3781782724a4cc586867558c187559f,
title = "Ethical sharing of health data in online platforms – which values should be considered?",
abstract = "Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME {\textquoteleft}Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives{\textquoteright} (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals{\textquoteright} trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.",
keywords = "Faculty of Humanities, Data sharing, Ethical values, Health data, Health research, Information and communication technology platforms, Interoperability",
author = "Brigida Riso and Tupasela, {Aaro Mikael} and Danya Vears and Heike Felzmann and Julian Cockbain and Michele Loi and Kongsholm, {Nana Cecilie Halmsted} and Silvia Zullo and Vojin Rakic",
year = "2017",
doi = "10.1186/s40504-017-0060-z",
language = "English",
volume = "13",
journal = "Life Sciences, Society and Policy",
issn = "1746-5354",
publisher = "SpringerOpen",
number = "12",

}

RIS

TY - JOUR

T1 - Ethical sharing of health data in online platforms – which values should be considered?

AU - Riso, Brigida

AU - Tupasela, Aaro Mikael

AU - Vears, Danya

AU - Felzmann, Heike

AU - Cockbain, Julian

AU - Loi, Michele

AU - Kongsholm, Nana Cecilie Halmsted

AU - Zullo, Silvia

AU - Rakic, Vojin

PY - 2017

Y1 - 2017

N2 - Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives’ (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

AB - Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives’ (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals’ trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

KW - Faculty of Humanities

KW - Data sharing

KW - Ethical values

KW - Health data

KW - Health research

KW - Information and communication technology platforms

KW - Interoperability

U2 - 10.1186/s40504-017-0060-z

DO - 10.1186/s40504-017-0060-z

M3 - Journal article

C2 - 28825221

VL - 13

JO - Life Sciences, Society and Policy

JF - Life Sciences, Society and Policy

SN - 1746-5354

IS - 12

ER -

ID: 182390915