Data protection and privacy rules for research

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Draft

Introduction

Data protection and privacy rules for research are derived from general law on these subjects. Some countries have a fairly clear and central act (e.g. Swiss Federal Action on Data Protection, others (like the UK) have a rather messy central act and others (like the US) did not manage.

Most acts also address research. E.g. in the Swiss act, Art 13 we find:

1. A breach of privacy is unlawful unless it is justified by the consent of the injured party, by an overriding private or public interest or by law.
2. An overriding interest of the person processing the data shall in particular be considered if that person:
...
e. processes personal data for purposes not relating to a specific person, in particular for the purposes of research, planning and statistics and publishes the results in such a manner that the data subjects may not be identified;

Some additional directives are often specified in ordinances or equivalent, e.g. the Swiss DPO waives registration of data files for research purposes.

National or international research bodies and funding agencies also can formulate rules, often derived from national or supra national legislation, but also from more general research ethics principles.

Universities also can adopt these rules and/or create their own rules.

See also:

General rules in various places

OECD Recommendations for protection of personal data

The OECD recommendations include the following principles, reproduced with identical contents, but different formatting:

Collection Limitation Principle
There should be limits to the collection of personal data and any such data should be obtained by lawful and fair means and, where appropriate, with the knowledge or consent of the data subject.
Data Quality Principle
Personal data should be relevant to the purposes for which they are to be used, and, to the extent necessary for those purposes, should be accurate, complete and kept up-to-date.
Purpose Specification Principle
The purposes for which personal data are collected should be specified not later than at the time of data collection and the subsequent use limited to the fulfilment of those purposes or such others as are not incompatible with those purposes and as are specified on each occasion of change of purpose.
Use Limitation Principle
Personal data should not be disclosed, made available or otherwise used for purposes other than those specified in accordance with Paragraph 9 except:
a) with the consent of the data subject; or
b) by the authority of law.
Security Safeguards Principle
Personal data should be protected by reasonable security safeguards against such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.
Openness Principle
There should be a general policy of openness about developments, practices and policies with respect to personal data. Means should be readily available of establishing the existence and nature of personal data, and the main purposes of their use, as well as the identity and usual residence of the data controller.
Individual Participation Principle
An individual should have the right:
a) to obtain from a data controller, or otherwise, confirmation of whether or not the data controller has data relating to him;
b) to have communicated to him, data relating to him within a reasonable time; at a charge, if any, that is not excessive; in a reasonable manner; and in a form that is readily intelligible to him;
c) to be given reasons if a request made under subparagraphs(a) and (b) is denied, and to be able to challenge such denial; and
d) to challenge data relating to him and, if the challenge is successful to have the data erased, rectified, completed or amended.
Accountability Principle
A data controller should be accountable for complying with measures which give effect to the principles stated above.

EU/EC Rules

The EU has several acts. In particular the Directive 2002/58/EC on privacy and electronic communications and its amending 2009/136/EC), the Directive 95/46/EC on the processing of personal data and on the free movement of such data, and the 2000/520/EC decision on the safe harbour principle.

A new single law is under preparation (as of May 2014).

Read more:

UK

In 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.

Read more:

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.

USA

The US doesn't seem to have any central data protection and privacy law. According to Wikipedia, the Personal Data Privacy and Security Act of 2009 failed because it was opposed a wide range of organizations (e.g. the US Chamber of Commerce, Advertising, Financial services, Internet Commerce, ...). However there are dozens of federal and local laws, plus "case law".

Data protection and privacy in research ethics

Research ethics include principles of data protection and privacy laws. In addition it involves other fundamental principles like academic standards or specific principles applied to medical research.

With respect to privacy and data protection, the EC formulated the following recommendations for FP7 research projects.

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)

Read more:


Guidelines and consent form examples

Most European universities and sometimes its schools/departments seem to issue internal guidelines and consent forms.

Faculty of psychology and educational sciences / University of Geneva

(rough translation from french)

Instructions For Writing The Information and Consent Form

Information

Information given to participants should include at least the following elements:

  • general objectives of the research;
  • procedure and duration of the experiments and its breaks (experiment blocks and minimal breaks if applicable ) ;
  • benefits and advantages - disadvantages and potential risks to participants;
  • data protection, data archiving and destruction measures ;
  • access to the results (individual or group) for research participants: terms and date on which results are available
  • name and address of contact persons

In its wording, the text should address the participants and must be understandable by non-specialists. In particular, the procedure and the potential risks should be described in an accessible language .

In all cases, the coordinates(s) (at least email) of the head(s) of research.

The "consent" part is signed by the party and has to be adapted to the specificities of the research. For example, if the data is anonymous - ie. it is not possible to go back to the participant, the reference to data destruction of the data can be removed.

Example paper form

Research {Name of the project or the research domain} Head(s) of the research project: {name(s) function(s) and contact}

INFORMATION FOR PARTICIPANTS AND Consent participation

Information for participants

I consent to participate in this research Based on the above information , I confirm my consent to participate in research{Name of project or research}. I authorize:

  • the use of data for scientific purposes and the publication of the research results in scientific journals or books, provided that the data will remain anonymous and no information will be given about my identity
[] YES [] NO
  • the use of data for educational purposes (courses and seminars for training students or professionals subject to professional secrecy):
[] YES [] NO

I have voluntarily chosen to participate in this research. I was informed that I may withdraw at any time without giving reasons and I can, if necessary, seek the destruction of my data.

This consent does not discharge the organizers of the research of their responsibilities. I keep all my rights guaranteed by law.

First Name, Last Name
Signature
Date

Links

Guidelines

Policy bodies

General

EC regulations

Sites and journals

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