Header

UZH-Logo

Maintenance Infos

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


Riso, Brígida; Tupasela, Aaro; Vears, Danya F; Felzmann, Heike; Cockbain, Julian; Loi, Michele; Kongsholm, Nana C. H; Zullo, Silvia; Rakic, Vojin (2017). Ethical sharing of health data in online platforms – which values should be considered? Life Sciences, Society and Policy:13:12.

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 ‘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.

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 ‘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.

Statistics

Citations

Dimensions.ai Metrics

Altmetrics

Downloads

0 downloads since deposited on 01 Mar 2018
0 downloads since 12 months

Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:2017
Deposited On:01 Mar 2018 09:07
Last Modified:14 Mar 2018 18:06
Publisher:SpringerOpen
ISSN:2195-7819
OA Status:Gold
Publisher DOI:https://doi.org/10.1186/s40504-017-0060-z

Download

Download PDF  'Ethical sharing of health data in online platforms – which values should be considered?'.
Preview
Content: Published Version
Filetype: PDF
Size: 479kB
View at publisher
Licence: Creative Commons: Attribution 4.0 International (CC BY 4.0)