Introduction

This guidance focuses on ethical considerations related to the inclusivity of data for research and statistical projects, addressing inclusivity from the perspective of the UK Statistics Authority’s current data ethics approaches and processes. This includes the use of primary data that is collected for specific projects, as well as the secondary analysis of existing data sources, such as administrative data. It has been developed by the UK Statistics Authority’s Centre for Applied Data Ethics and complements other inclusivity initiatives within the Office for National Statistics, including addressing the recommendations report of the Inclusive Data Taskforce and work with the Global Partnership for Sustainable Development Data as part of the Inclusive Data Charter.  

The guidance has been produced as a direct response to the Inclusive Data Taskforce report and also aligns with the UK Statistics Authority’s 5-year strategy, Statistics for the public good, with the objective to ensure that the statistics we produce “reflect the experiences of everyone in our society so that everyone counts, and is counted, and no one is forgotten”.  

The guidance is divided into four main parts. The first considers what we mean by inclusivity in research and statistics. The second explores the relationship between inclusivity and data ethics at the practical level. The guidance then provides some key points to consider in addressing inclusivity from an ethical perspective, and finally, the guidance provides a list of further resources and associated links that may be useful is provided. 

The guidance acts as a practical resource for the research and statistical community to consider how inclusivity in data can be appropriately addressed in accordance with each of the UK Statistics Authority’s existing ethical principles. This will enable inclusivity to be fully incorporated when considering the ethics of your proposed project and when completing the UK Statistics Authority’s ethics self-assessment tool.  

Ensuring that the public trust researchers and statisticians to use their data in ethically appropriate ways is vital, particularly if we are to fill identified data gaps for relevant groups and populations. Showing a clear consideration of ethical issues, and effectively addressing those issues when collecting, analysing and disseminating data, is a key aspect of facilitating trust in the research process across society.  

What do we mean by inclusivity in research and statistics?

When undertaking any research or statistics project, it is important to consider who we are representing in the data that we collect and analyse, and the impacts that this can have on our ability to deliver public good.

The UK Statistics Authority’s Inclusive Data Taskforce considered the inclusivity of data in relation to a range of areas, including:

• The 9 protected characteristics of the Equalities Act (i.e., age; disability; gender reassignment; marriage and civil partnership; pregnancy and maternity; race; religion or belief; sex; and sexual orientation);
• Additional areas associated with the Sustainable Development Goals (e.g., income; migrant status; and geography);
• Other topics that would allow contextual and cross-cutting insights into equalities (e.g., socioeconomic status, access to the natural environment, intersectionality); and
• Data on those at risk of greater disadvantage or who may be ‘missing’ from household surveys (e.g., homeless people, those not resident in private households).

Ensuring that our data adequately reflects the voices and experiences of everyone across society is vital. However, this can also present challenges related to accessing populations, adequately measuring different experiences and characteristics, and aspects related to trust, confidentiality, and cultural sensitivities. These aspects are discussed in several webinars detailed in the find out more section of this guidance.

Despite these challenges, within Great Britain we have both a legal duty under the Equality Act 2010 and an ethical duty to address inclusivity when collecting and using data for research and statistics. There is separate equality legislation that applies in Northern Ireland.

Inclusivity and ethics

Ensuring that inclusivity is appropriately addressed with any research or statistical project is important from both a legal and an ethical perspective. The UK Statistics Authority’s six ethical principles can be used as a framework to consider data ethics aspects of inclusivity:

• Methods and quality: The risks and limits of new technologies are considered and there is sufficient human oversight so that methods employed are consistent with recognised standards of integrity and quality.
• Transparency: The access, use and sharing of data is transparent, and is communicated clearly and accessibly to the public.
• Legal compliance: Data used and methods employed are consistent with legal requirements such as the Equality Act 2010, Data Protection Legislation [1], the Human Rights Act 1998, the Statistics and Registration Service Act 2007 and the common law duty of confidence.
• Public views and engagement: The views of the public are considered in light of the data used and the perceived benefits of the research.
• Confidentiality and data security: The data subject’s identity (whether person or organisation) is protected, information is kept confidential and secure, and the issue of consent is considered appropriately.
• Public good: The use of data has clear benefits for users and serves the public good.

Each of these principles, and its relationship to inclusivity, is considered in the following sections. This includes highlighting key issues related to inclusivity, why these issues are important, and aspects to think about when addressing them in research and statistical projects.

[1] “Data Protection Legislation” means the full, applicable data protection framework as set out in the Data Protection Act 2018. This encompasses general processing (including the General Data Protection Regulation and the applied GDPR).