In research with people there may be a potential tension between data sharing and data protection. In many cases, research data obtained from people can be shared without violating data protection and research ethics principles. Research Ethics Committees play a role in guiding researchers in this area.

Many research funders increasingly encourage research data created through grants they fund to be shared and made available for long-term use by the wider research community.

Here at the Archive we provide guidance to help researchers and Research Ethics Committees (RECs) to address sharing research data as part of the ethical review process and to enable data sharing without breaching participant confidentiality.

We are a designated national centre for storing and sharing research data in the social science and humanties and make archived data available, at no cost, to the research, learning and teaching communities.

Information for Research Ethics Committees

The role of RECs is to protect the safety, dignity, rights and well-being of research participants and to promote ethically sound research. This involves ensuring that the research complies with the Data Protection Act 1998, that personal information collected by researchers is not misused in any way and is treated according to data protection principles.

The Archive ensures that all archived research data are used only in appropriate and ethical ways, and that research participants are protected and personal data safeguarded. Archived data are typically anonymised, unless specific consent has been given for personal information to be included.  Archived data are not in the public domain but their use is regulated for specific purposes after user registration. Users sign an End User Licence, in which they agree to certain conditions, such as  not using data for commercial purposes, not identifying any potentially identifiable individuals and not sharing data with unregistered users. For confidential or sensitive data stricter access regulations may be imposed, such as requiring authorisation from the data owner prior to release of data to a user or placing confidential data under embargo for a given period of time until confidentiality is no longer pertinent.

More and more RECs are currently addressing data sharing in their guidelines or in ethical review procedures.

• Kings College London, in its Research Ethics Guidelines, highlights a researcher's responsibility to archive anonymised data and make them available for re-use and provides a template to obtain consent for data that are not anonymised - consent is for the use, retention and re-use of extended written contributions, audio and video recordings and transcribed interviews
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• The University of Essex, in its Guidelines for Ethical Approval of Research Involving Human Participants, points out to researchers that informed consent should be obtained for the sharing of research data and for the publication of findings
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Reconciling data sharing and data protection

Tensions or confusions seem to exist between data protection and data sharing, especially when research data obtained from participants contain personal data, sensitive or confidential information. The easiest solution may seem to not share data and keep all information confidential and hidden. This, however, does not help the research community in the longer term.

Most research data obtained from participants can be successfully archived and shared, without breaching confidentiality.  It is vital to

• distinguish clearly between personal data collected in research, and research data in general. Data protection legislation applies only to personal data. Once data have been anonymised, data protection principles no longer apply. Therefore, data protection principles should only be applied to those data which constitute personal data, and certainly not to all data obtained from research participants.

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• distinguish which research data obtained from participants are sensitive or confidential data.  Researchers may be bound by a duty of confidentiality towards participants. While most research data are not sensitive or confidential, even those that are can still be shared ethically if researchers apply one or more of the following strategies:
  • obtain informed consent for data sharing, besides obtaining consent for participation and for other uses such as publication
  • protect people's identities when necessary, by anonymising research data
  • decide if access restrictions to all or part of the data may be required, e.g. restrict access to personal data

These three procedures should always be considered jointly, not in isolation, and researchers should discuss them openly with participants.

• plan for data sharing should be done at the earliest stages of designing a project and well in advance of beginning fieldwork. For example, if researchers explain how confidential information will be kept, stored and used safely and how personal information may be removed to anonymise data, then informed consent can be obtained for sharing or archiving such anonymised data. This will allow participants, in consultation with researchers, to make an informed decision about whether or not data can be shared.

How RECs can help researchers share data

RECs can help by providing information to researchers on how data sharing can be reconciled with ethical research.

RECs can encourage researchers to address data sharing early in research planning and as part of the consent process, so that measures can be put in place to safegaurd participants and the information they provide and appropriate consent can be obtained for a variety of data uses.

The following guidelines are useful sources of information for RECs:

• ESRC Research Ethics Framework: " Secondary use of datasets needs to be given careful consideration by both the researcher and the REC, especially with regard to presumed consent and the potential risk of disclosure of sensitive information. This applies to the user of data and also to the researcher who originates it. Researchers who collect the data initially should be aware that ESRC expects that others will also use it, so consent should be obtained on this basis and the original researcher must take into account the long-term use and preservation of data."
• Medical Research Council data sharing policy and Personal Information in Medical Research guidelines: "...researchers should foresee the need for sharing and archiving research data when obtaining consent..." and "Consent to this should be distinct from consent to the primary use of the information."
• Archive guidelines on consent, confidentiality and ethics in data sharing
• Archive information for research participants on the purpose and benefits of data archiving

Information for researchers

A REC may request that personal data collected during research, that is, data that can identify respondents, should be destroyed after a certain time period to avoid possible disclosure.  However, it is important to distinguish between personal data collected in research, and research data in general.

Personal data should not be disclosed, unless specific consent has been given. Identifiable information can be excluded from data sharing. Thus, a REC should not ask researchers to destroy research data in general, but may ask for personal data to be destroyed.

A REC should also not object to any statement in a consent form that asks for wider sharing of research data.  If research data contain sensitive or confidential information, then the sharing of such data should be considered carefully, but should certainly not be dismissed as being impossible. If in doubt, refer the REC to information on this web page.

Contact us for advice when unsure how to address the sharing of research data as part of an ethical review process, or if conflict exists between the need to archive data and a REC's guidelines on data management.

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