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Discussion paper: An international example of data ethics advisory

Published on 07 June 2020.

Discussion paper - An international example of data ethics advisory - March 2020 [PDF, 926 KB]

Purpose and scope

This paper has been prepared on behalf of the Government Chief Data Steward for the Data Ethics Advisory Group. It discusses the National Statistician’s Data Ethics Advisory Committee (NSDEC) operating in the UK which is supported by the UK Statistics Authority (UKSA). This paper explores practices of the committee and the support team (particularly triage and engagement) which may be relevant to the function of the Group as it matures. This paper is not official New Zealand government policy.

This paper is intended to support the general discussion of ‘best-practice’ for data ethics advisory and the function of the Group. The issues canvassed should not be considered reflective of the position of any specific government agency (including Stats NZ).

National Statistician’s Data Ethics Advisory Committee

Executive summary

The NSDEC was established to advise the National Statistician in areas of access, use and sharing of public data for research and statistical purposes. The committee aims to develop public trust in the ethical use of government data while enabling data benefits that serve the public good. This is similar to, but not necessarily the same as, the independent advisory function that the Group provides to the Government Chief Data Steward.

  • Projects and policies are self-assessed in their entirety based on 22 sub-principles, and in cases where potentially ethically contentious data is used or there are risks or harms which cannot be fully mitigated, it is recommended to go before the committee for a ‘full independent ethical review’.
  • The NSDEC provides more technical advice specific for projects and policies. This is a different approach from some other advisory groups such as the Danish Data Ethics Council which addresses broader issues such as the implications of data linkage.

The 22 sub-principles used to self-assess
The Danish Data Ethics Council

Development of processes has helped the NSDEC streamline its core functions over time. There has been a deliberate transition from a ‘start-up’ phase into a ‘support’ phase to address an increased level of engagement and to better advise for the developments that have occurred with ‘big data’ and the data science field.

  • The ‘start-up’ phase established guiding ethical principles and a narrative to encourage cultural change. The ‘support’ phase developed sub-principles, user-support processes, a self-assessment tool and project-based themes or ‘precedents’ which could be applied to different projects with similar characteristics.

Self-assessment tool

Over 150 projects have been engaged, either directly by the NSDEC or by its support processes since 2015. Approval has been granted for 44 projects (as at February 2020) which have gone directly to the committee. ‘Very few’ projects are rejected by the Committee as prior support helps to mitigate ethical issues at early stages. Feedback can often involve recommended changes and researchers have been receptive and responsive to feedback. The findings and considerations of the advisory process are made public in meeting minutes for transparency purposes.

44 projects

  • An auditing process has recently been developed and is carried out by a support team to ensure recommendations, such as major revisions, are acted on.

Currently, submissions primarily involve the linking of health data, research regarding children or some other aspect of qualitative research. Generally, these are government or academic led projects rather than projects involving private partners and government-held data, although these types of projects are also accepted.

Remaining content of the paper

Following the executive summary, the PDF version of the paper also contains the following content.

  • The NSDEC operates in a similar way to the Data Ethics Advisory Group
  • A ‘start-up’ phase helped the NSDEC to establish operating procedures
  • Transition to a ‘support’ phase helped the NSDEC to streamline processes
  • The NSDEC approach is unique from other data ethics advisory groups
  • The NSDEC process has similarities to data ethics groups and tools in Aotearoa New Zealand
  • Appendix 1-5: perceived characterists, subprinciples, NSDEC self-assessment form, flow diagrams.

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Content last reviewed 17 September 2020.