Ethics and Secondary Data Sources

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.

http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/opportunities/research_ethics_framework/

Research data are potential valuable resources, which have been produced through considerable investment in terms of work and finance. Many datasets have significant potential value beyond the original research, and sharing research data through data archives serves to:

  • encourage scientific enquiry and debate
  • enable scrutiny of research outcomes
  • facilitate research beyond the scope of the original research
  • lead to new collaborations between data users and data creators
  • increase the impact and visibility of research
  • reduce the cost of duplicating data collection
  • provide important resources for education and training
  • encourage the improvement and validation of research methods
  • promote the research that created the data and its outcomes

UKDA (2009) Managing and Sharing Data: a best practice guide for researchers:
http://www.data-archive.ac.uk/news/publications/managingsharing.pdf

Furthermore, as a condition of funding, researchers are increasingly being required to undertake to place data in archives. This is required by the ESRC, the Canadian Institutes of Health Research, the European Research Council, the Irish Higher Education Authority, the Medical Research Council and the Wellcome Trust. Leverhulme recommends archiving and Nuffield requires it for survey data and recommends it for other data. For up to date summaries of research funders policies regarding grant awards see http://www.sherpa.ac.uk/juliet/ .

Clearly, archiving of data such that it can be used by other researchers raises ethical issues with particular regards to informed consent and to protecting the anonymity and confidentiality of participants. (See the discussion on Consent in the Core Issues section.) Anonymity and confidentiality can, to a large extent, be safeguarded by removal of names and any other information that could enable others to identify participants. In some cases removal of contextualizing information would make it difficult for others to judge the validity of the research findings and/or would render the data useless as a secondary source. However, researchers should not agree to archive information in a way that would be unfair to participants and expectations regarding archiving should be discussed with funders at an early stage.

From the outset, participants should be made fully aware regarding information which will be made available to other researchers. As a general rule all eventualities that can be anticipated regarding the future data use should be covered on information sheets such that people can give genuinely informed consent in this regard. In some circumstances it may be necessary to adopt a staged consent strategy, that is, consent to participate in research, followed at a later point by consent for publication and future data use. However, it may not always be possible to anticipate every eventuality (and attempting to do so could be burdensome and worrying to participants). In this regard, the authors of the Data Sharing Review (2008) cite the Data Protection Act as providing the basic protection of prohibiting reuse of data “in any manner that is incompatible with the original purpose”. They do however, point out that “‘incompatible with’ is not the same as ‘different from’” and express the pragmatic view that:

… returning to people on each occasion when an organisation wishes to reuse personal information for clearly beneficial and not incompatible purposes would impose a disproportionately heavy burden, particularly where the data pool is large. (5.17)

and advise that:

Consent clauses should be written in a way that provides for reasonable additional uses of information, while giving patients and others sufficiently specific explanations and safeguards to prevent inappropriate uses or sharing of information about them. (5.20)

http://www.justice.gov.uk/reviews/datasharing-intro.htm

Confidential research data can be shared in archives by combining one or more of these strategies:

  • obtain informed consent for archiving and for future use compatible with the original research.
  • protect the identity of participants and places by anonymising data and removing other identifying information (see below).
  • restrict access (e.g. by group, use, time).

With regard to protecting the identities and privacy of participants, the UK Data Archive Best advises:

  • plan anonymisation at the time of transcription or initial write up.
  • use pseudonyms or replacements.
  • retain unedited versions of the data for use within the research team and for preservation.
  • create an anonymisation log of all replacements, aggregations or removals made; care should be taken to store such a log separately from the anonymised data files.
  • identify replacements in a meaningful way, e.g. with [brackets].
    Digital manipulation of audio and image files can be used to remove personal identifiers. However, techniques such as voice alteration and image blurring are labour intensive and expensive to apply to large quantities of data and are likely to damage the research potential of the data. If confidentiality of audio-visual data is an issue, it is better to obtain the participant’s consent to use and share the data unaltered.

UK Data Archive, ‘Managing and Sharing Data: a best practice guide for researchers’:
http://www.data-archive.ac.uk/news/publications/managingsharing.pdf

In addition to ensuring ethical standards, researchers also need to ensure that the requirements of the Data Protection Act are met (see 'Data Security (the Data Protection Act)'). However, it should be noted that if data is anonymised (personal identifiers removed) then the DPA will not apply as this no longer constitutes ‘personal data’.

Resources

UKDA – Manage and Share Data www.data-archive.ac.uk/sharing/sharing.asp

British Sociological Association
http://www.britsoc.co.uk/equality/Statement+Ethical+Practice.htm

British Sociological Association - Visual Sociology Group – Ethical guidelines
http://www.visualsociology.org.uk/about/ethical_statement.php

Clark, A. 2006. Anonymising research data. NCRM Working Paper Series 7/06. ESRC National Centre for Research Methods.
http://www.ncrm.ac.uk/research/outputs/publications/WorkingPapers/2006/0706_anonymising_research_data.pdf

Data protection Act 1998
http://www.uklegislation.hmso.gov.uk/acts/acts1998/ukpga_19980029_en_1

ESRC Research Ethics Framework
http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/Images/ESRC_Re_Ethics_Frame_tcm6-11291.pdf

Freedom of Information Act 2000
http://www.opsi.gov.uk/acts/acts2000/ukpga _20000036_en_1

Human Rights Act 1998
http://www.opsi.gov.uk/acts/acts1998/ukpga_19980042_en_1

Methodological Issues in Qualitative Data Sharing and Archiving
www.cardiff.ac.uk/socsi/hyper/QUADS/index.html

National Centre for Research Methods - informed consent project
http://www.southampton.ac.uk/socsci/sociology/research/projects/informedcontent.html

Oral History Society guidelines
http://www.ohs.org.uk/ethics/

Research ethics in art, design, media
http://www.biad.uce.ac.uk/research/rti/ethics/

Social Research Association
http://www.the-sra.org.uk/ethical.htm

 

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