Data Management for sensitive data in the era of Open Science

Lecturers: Pablo Diaz & Alexandra Stam.

Week 2 (23 - 27 August 2021).

 

Topic:

In the era of Open Science, researchers are increasingly required to share their research data. Not only do funders require data management plans (DMPs) to be submitted along with their research proposals, they also expect the sharing of data after the project’s completion. Also, an increasing number of scientific journals make data sharing a condition for publication. All indications are that these trends will continue. While researchers generally tend to declare positive attitudes towards data sharing, there are many legal, ethical, and practical challenges, especially for those working with sensitive data. Further, researchers often have difficulties understanding the complex array of issues and do not have easy access to local support services.

This workshop will help researchers to understand the legal, ethical, and practical challenges around key data management domains in the emerging era of Open Data, in relation to the handling and sharing of sensitive data. Sensitive data are, in the eyes of the law, a special category of data whose processing is subject to strict rules and principles. We will address the legal and ethical framework governing the processing of sensitive data at the Swiss and European level. Our aim is for researchers to learn to recognise the framework that applies to them according to their status, their place of establishment and their sector of activity. We will also treat the relevant indispensable data management skills, including data anonymization, informed consent, and risk assessment as central elements of the regulations in force.

Through this workshop we will provide practical insights for sharing sensitive data and meeting Open Science requirements. Taking the perspective of the social sciences, it will provide a wide variety of hands-on exercises to teach participants how to deal with sensitive data during and after their research projects. Questions include: what are the differences between sensitive and personal data? How can sensitivity be measured and what are the consequences with respect to legal and ethical requirements? How to obtain valid informed consent? How to secure one’s working environment to ensure the protection of data during a research project? How to practically process sensitive data in order to fulfill Open Data requirements? How to anonymise quantitative and qualitative data?

Objectives:

In this hands-on and interactive workshop you will:

  • Learn to recognize and handle sensitive and/or personal data
  • Understand the main ethical and legal challenges around sensitive data
  • Learn how to practically process sensitive data to comply with Open Data requirements with respect to data security, data processing (anonymization/coding) and the sharing of sensitive data