Inclusive Design Toolkit

When involving people in the design process, there are various ethical issues that need to be considered so that they are treated safely, appropriately and with respect. This is important morally and protects your company and its reputation. It can also help the participants to open up and provide better quality information.

People could be involved in many different ways, such as focus groups, interviews, observations, surveys, user trials or co-creation workshops. In this webpage, the word ‘study’ is used to mean any of these (or other) ways of involving people.

This page is not intended to be a comprehensive guide to ethics in design. Rather it simply introduces some of the key principles and provides some links to further information.

On this page:

In inclusive design, it is important to recruit a range of people from across the whole spread of backgrounds and abilities in your target population. The sections in this toolkit giving an Overview of the users and Tools for understanding user diversity may be helpful in understanding this spread.

Recruiting this range of people can be challenging and it is important to be aware of which parts of the target population you have involved and whether there are segments that have been missed out. Gathering some key information from participants and comparing it to population data can help with this, as discussed in our toolkit page on survey data.

Recruiting through specialist agencies and community groups can be helpful, as is creating a positive experience for participants and building trust to encourage word-of-mouth introductions.

When advertising for a study, it is important that advertisements provide enough information to interest people without overwhelming them. Once a potential participant gets in touch to express interest, they should be given enough information to enable them to determine if they want to take part, so that they don’t waste their time travelling to the study.

Participants should be reimbursed for out-of-pocket expenses, e.g., transport costs. It can also be helpful to offer incentives such as book or shop vouchers. For commercial projects, it is good practice to pay participants a mutually agreed fee.

It is important that participants give informed consent to:

• Participating in the study. Informed consent means that the participants have a clear understanding of what participating in the study means so that they can make an informed and free decision on whether to take part. To do this, the participants will need to be provided with information on the study. Time should be allowed for them to read (or listen to) and consider the information and ask any questions they have about it.
• Audio and video recordings. If you want to take any such recordings, participants should be informed about this in advance and told how these will be used. Consent to the recordings and their use should be included in the consent form.
• Their data to be collected, stored and shared. More information about this is given in the section on Confidentiality below.

Participants then usually sign a form to indicate their consent. Verbal consent is also possible, though this should be witnessed and recorded if possible. This is important in case of any issues later.

Participants should be made aware that:

• they have the right to withdraw from the study at any time during the study, or decline to answer any particular questions;
• they have the right to withdraw from the study afterwards. If the processing or publishing of their data makes it impossible for them to withdraw their consent after a particular point in time, then they should be made aware of this (e.g. if the data is anonymised or hosted in a repository);
• they will still receive any incentive offered for taking part in the study, even if they decide to withdraw after they begin.

Furthermore, check the rules and regulations of the country you are conducting the survey in, and the country your organisation is based in, as some countries may have additional legislation on consent.

Potential issues:

• There may be difficulties around obtaining informed consent for certain groups of people, e.g., children or those with dementia. It is important to refer to specific ethical guidance for working with such groups.
• It may also not be feasible to obtain informed consent for some research such as observations of crowd behaviour. Please refer to specific ethical guidance on the research methods you are planning to use.

It is important to treat participants safely, appropriately and with respect. This involves:

• Being careful not to cause any harm to the participants. This includes indirect, unintentional harm both in the study itself and afterwards from the use of the data (especially personal, sensitive data). During the study, consider the demands on the participants’ time and energy and make sure they can rest if needed.
• Honesty about the purpose of the study, what will be involved in the study and what you will do with the results. Make sure that all personal data collected is relevant, and only collect the minimum amount of data that is strictly necessary for the purpose of the study.
• Ensure the design and delivery of the data collection process is appropriate for your purposes and for the audience being researched.
• Treating people with respect and sensitivity. Note that they may be particular issues when working with children, vulnerable people and those from different cultures. Extra care and a chaperone may be needed when working with vulnerable people.People from different cultures may have different cultural norms and expectations, and may require a translator. It is best to consult specialist advice when working in these situations.
• Respecting a participant’s right to withdraw from the study at any stage (see section on Consent above).
• Being alert to any signs of distress, particularly if you are touching on any topics that may be sensitive, either in general or for the particular participant.
• Being aware of any special needs, particularly when working with older people or those with disabilities. This may include needs for toilet breaks or refreshments, particularly in longer studies, as well as accessibility requirements such as the need for information in large print or in alternative formats.

Note that there are specific rules, regulations and guidelines if working with children or vulnerable adults. For example, researchers may need to have a criminal records check or be accompanied by a chaperone. Please check and refer to the specific guidelines and regulations for your country and your specific target user group. More guidance can be found in the book: Alderson, P. & Morrow, V. (2004): Ethics, Social Research and Consulting with Children and Young People. London: Barnardo’s. ISBN: 1-9046590-7-1.

There may also be guidelines for specific types of user research.

The collection, storage, sharing and use of study data is likely to be subject to data protection legislation. It is important to check the rules and regulations of the country you are conducting the survey in and the country your organisation is based in. In the UK, this falls under the the Data Protection Act.

In particular, it is important that you do not pass on study data to a third party without the participants’ prior consent (see section on Consent above). This is particularly important for any information that is private or potentially sensitive. Permission for sharing audio and video recordings should also be obtained explicitly.

It is important to realise that simply removing a participant’s name is not always enough for anonymity. It may be possible to identify the participant from the shared information (e.g., postcode, age or other characteristics) particularly if your recruitment pool is small (e.g., if it’s clear that you sampled from a particular community group). Information that may identify a participant is also often contained in quotations, and may need to be obscured or removed.

Data should be stored in a secure place or data storage facility to make sure that it is not accessed by outside parties without you intending it to be.

User research in design shares many characteristics with market research, so the Market Research Society’s guidance on the data protection act may be useful in understanding the issues involved in data protection and putting them into practice.

Accurate, unbiased representation is important. Listen to what they are actually saying, without pre-conceived ideas, and represent the participants fairly and accurately when analysing and reporting the results.

The information in this page is based on:

• our own expertise;
• the University of Cambridge ethical guidelines;
• the British Pscyhological Society’s Code of Ethics and Conduct;
• the RCA’s Designing with People website (not currently available);
• Interaction-design.org’s advice on Conducting ethical research.

These sources also provide additional information on this topic.