Data protection and privacy rules for research

Draft

Introduction

See also:

• Privacy

General rules in various places

EU/EC Rules

Directive 2002/58/EC (and its amending acts, such as Directive 2009/136/EC), the Privacy Directive 95/46/EC on the protection of individuals with regard to the processing of personal data.

Researchers must be aware that volunteers have the right to remain anonymous. Researchers must comply with Data Protection legislation in the Member State where the research will be carried out regarding ICT research data that relates to volunteers.

Informed consent is required whenever ICT research involves volunteers in interviews, behavioural observation, invasive and non-invasive experimentation, and accessing personal data records. The purpose of informed consent is to empower the individual to make a voluntary informed decision about whether or not to participate in the research based on knowledge of the purpose, procedures and outcomes of the research.

Before consent is sought, information must be given specifying the alternatives, risks, and benefits for those involved in a way they understand. When such information has been given, free and informed consent must be obtained. Depending on the nature of the research, different consent procedures may be used. Special consideration must be given when volunteers have reduced autonomy or are vulnerable

(Annex 5: Ethical Guidelines for undertaking ICT research in FP7)

UK

n the UK, the administration of Data Protection is overseen by the Information Commissioner’s Office, which is responsible for the enforcement of the UK Data Protection Act 1998, which is the relevant legislation in force. The provisions of the European Privacy directive are enforced under the Privacy and Electronic Communications (EC Directive) Regulations 2003.

France

Directive 95/46/EC is incorporated into French Law Nr. 2004-801 of 6 August 2004 relating to the Protection of Data Subjects as Regards the Processing of Personal Data. Data protection is overseen by the Commission Nationale de l’Informatique et des Libertés (CNIL)

Switzerland

The Swiss Federal Act on Data Protection 1992 is based on similar principles to the Acts in force in other European countries and received adequacy approval from the EU in 2000.

Links

Guidelines

• Annex 5: Ethical Guidelines for undertaking ICT research in FP7 (EC)

Policy bodies

• European Group on Ethics in Science and New Technologies (EC)

General

• European Parliament Tightens Privacy Rules, Science Insider, 12 March 2014