ETHICS, INCLUSIVENESS, DIVERSITY + EQUALITY
Ethical procedures are essential to ensure research is carried out fairly and does not put your users at risk or cause them harm.
General Data Protection Regulation (GDPR)
It is a legal requirement to get participants’ consent if you want to collect, use or store any personal data shared with you. A photograph or a video of a person constitutes ‘data’. Informed consent forms are signed by project participants to show that they are in agreement with taking part in the research, that they have sufficient information about the project in order to make an informed decision, and that they agree to the data being used in specified ways.
In the UK law, currently subsumed within the EU, specific regulations are in place when getting consent from children, vulnerable adults, or people with disabilities.
Inclusiveness, Diversity, Equality and Accessibility
When we undertake research, we need to ensure that all potential users are represented in our research. This helps us to make sure the designed services meet the needs of all members of our communities.
WHY ARE ETHICS IMPORTANT?
We must be honest, transparent and respectful to the people we work with. Proper ethical procedures make us mindful about what we are doing, how we are doing it, and how we care for those helping us to do it.
During one week in January 2012 the Facebook feeds of over 700,000 users were manipulated as part of a research study. Some users had content with more upbeat and positive words, while others had more negative and unhappy references. The aim was to see if those fed more unhappy content would themselves be more likely to post negatively. They were.
This research study was clearly legal. But was it ethical? The American Psychological Association has a clear ethical code: When psychologists conduct research or provide assessment, therapy, counsleling, or consulting services in person or via electronic transmission or other forms of communication, they obtain the informed consent of the individual.
In breaching the code, the study triggered a considerable ethical debate about such research.
Ethic is vital in any form of research, for reasons of honesty, transparency and respecting those whom we research. If we are not ethical it can damage our professional reputation. Facebook was big enough to ride out the storm. Most of the rest of us are not.
Guidelines for Legal, Inclusive and Ethical Recruitment of Participants (LIE)
As part of the Academy, you may invite service users and those that deliver services to be part of the work. This is essential to understand what the barriers are to accessing and using services.
We need to ensure that we are legal, inclusive and ethical in these interactions.
Ensure we gather and share participant data in a legal and GDPR compliant way.
All data generated in the Training Academy must be anonymised in such a way that interviewees cannot be directly or indirectly identified.
We need to be clear and transparent and use plain English to explain why we are asking questions and what we are going to be doing with the data gathered. We must be clear that any personal data gathered will only be used for the purpose stated.
Storage: Only keep data you need - If you no longer need a user’s personal data, delete it.
Consider who you invite to represent your user group. Could you get a broader representation in terms of gender, geography and protected characteristics? Consider who you might be excluding because of your own biases (people who look, think and behave like you).
Recognise that not everyone is available between 9-5 and ensure that the venue is accessible.
Make it easy for people to take part - this often means going to people where they are, at a time that suits them. Often partner organisations can help arrange safe and convivial spaces that your ‘users’ will feel more comfortable in.
Makes sure we…
•Do research ethically and ensure findings are used and shared anonymously
•Make sure participation is voluntary, and use of data understood
•Cause no harm
•Keep personal information safe and secure
User researcher Ditte Mortensen has written at length about the ethics of user research. These are her take aways:
• For the sake of respecting moral conventions and keeping your reputation intact, make sure you always consider the ethics of your user research project. We can sum up the most important considerations like so:
• Be honest with your participants about who you are and what your project is about.
• Be sensitive to your participants’ feelings and to cultural norms.
• Represent your participants accurately, and be open to what they are saying and doing.
• Get your participants’ informed consent to be a part of your research, and get their permission to record and share data.
• Never pressure participants, and be careful about whom you share sensitive information with.
• Keep participants’ data safe.
• Don’t waste your participants’ time.
• Remember, your research participants are invaluable fountains of facts. Be gracious and open with them; you’ll stand a better chance of establishing a higher value for your project and how it will benefit your users and, by association, your organization and yourself.
We recommend the following sources of information on research ethics.
The Scottish Government has taken some steps to make events, workshops and other activities more accessible and inclusive. Through a user-centred design approach, they have developed an inclusion form which makes it easier for us to gather information about people’s needs when we engage with them, for example before, during, and after an event or a workshop. This and other initiatives is explained by Dhruv Sharma and Anna Henderson in the Office of the Chief Designer here.