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

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.

Health, Medicine and Nursing
Material Type:
Aaro Tupasela
Brigida Riso
Danya F. Vears
Heike Felzmann
Julian Cockbain
Michele Loi
Nana C. H. Kongsholm
Silvia Sullo
Vojin Rakic
Date Added:
Intelligent Transportation Systems (ITS) Strategic Plan 2015-2019
Read the Fine Print

This resource contains a technical report on ITS's strategic plan for the years 2015 to 2019 and presents a wide array of technical, policy, institutional, and organizational concepts.

Automotive Technology and Repair
Material Type:
Data Set
Center for Automotive Technology - Macomb
Provider Set:
Center for Advanced Automotive Technology
USDOT Intelligent Transportation Systems, Joint Program Office
Date Added:
Mini Car Design Challenge
Conditional Remix & Share Permitted

This engineering design challenge is a great hands-on activity that utilizes the engineering design process, 3D modeling, and 3D printing technology. The challenge can be completed individually or in groups of 2 to 3. Students will work to complete the following challenge: Using the design process, design, document, model, and produce a toy car with interchangeable parts.

Material Type:
Lesson Plan
Zach Potter
Date Added: