The journal addresses the expanding scope and unprecedented impact of technologies, in order to improve the critical understanding of the conceptual nature and practical consequences, and hence provide the conceptual foundations for their fruitful and sustainable developments. The journal welcomes high-quality submissions, regardless of the tradition, school of thought or disciplinary background from which they derive.

Guest Editor: Jenny Krutzinna, Digital Ethics Lab, Oxford Internet Institute, University of Oxford

Introduction

Today, it is easy to donate blood or even organs, but it is virtually impossible to donate one’s own medical data. This is unacceptable. Data donation – the sharing of data by individuals and organisations (in this case also known as data philanthropy) for research, policy-making, and humanitarian purposes –is increasingly recognised as a crucial means to improve private and public life in mature information societies. Pharma companies donating their data to support research on communicable and devastating diseases offer good examples of the relevance of data donation for the welfare of our societies. At the same time, competing tensions on data control and ownership, respect of individual rights and consent, limited technical understanding, and the lack of adequate frameworks for coordination and ethical governance pose serious challenges to the donation of data and risk undermining its huge potential. Guidance to meet these challenges is urgently needed to ensure respect of users’ individual rights and consent, foster transparency and trust, as well as harness the value of data to spur scientific research, public debate, private and public wellbeing.

TOPICS

We request the submission of papers addressing topics including:

  • Theories and concepts critical to the ethical assessment of data donation
  • Relational concerns and the impact on family in medical data donation
  • Group-level protections, harms and benefits
  • Assessments of the role of trust and trustworthiness
  • Alternatives to current consent models for medical data donation
  • Ownership of medical data after death
  • The role of data donation in the information society
  • Impact of regulations on the use of medical data for research purposes
  • Policy recommendations and requirements for data donations
  • Empirical studies/cases of existing data donation practices that demonstrate critical ethical
    issues, concepts and solutions

Timetable

  • May 1, 2018: Deadline for paper submissions
  • July 1, 2018: Deadline reviews papers
  • August 1, 2018: Deadline revised papers
  • 2018: Publication of the special issue

Submission details

To submit a paper for this special issue, authors should go to the journal’s Editorial Manager:

The journal’s submission guidelines and instructions for authors can be found here.

The author (or a corresponding author for each submission in case of co- authored papers) must register into EM.

The author must then select the special article type: “Special Issue on Ethics of Data Donation” from the selection provided in the submission process. This is needed in order to assign the submissions to the Guest Editors.

Submissions will then be assessed according to the following procedure:

New Submission => Journal Editorial Office => Guest Editor(s) => Reviewers => Reviewers’
Recommendations => Guest Editor(s)’ Recommendation => Editor-in-Chief’s Final Decision =>
Author Notification of the Decision.
The process will be reiterated in case of requests for revisions.

For any further information please contact: Jenny Krutzinna