How to ask for consent from participants taking part in your research and design. Includes asking for consent from people with disabilities and for children and vulnerable adults.
If you’ve decided that consent is the legal basis for processing personal data in your project, this information will show you how to get it.
Whenever you ask participants for their consent, make sure it’s informed and active. This means being sure they’ve understood what they’re agreeing to, and have had the time to read the consent form. Get consent from everyone you do research with, even if you do not plan to collect their personal data. Because you may end up collecting personal data unintentionally.
For example, participants might type their address into a prototype website, or share personal and identifying information during an interview.
What you need to tell participants
For consent to be ‘actively informed’, participants need to understand what your research involves.
Before starting a research session, you have to tell them:
- your name, role and where you work
- why you’re doing the research
- what you’re going to ask them to do
- what you’ll do with any information they share with you
- whether the session is being observed and who’s watching
- whether the session is being recorded and how you’ll store any audio or video
- whether you plan to share their data in a way that allows them to be personally identified
You should also remind them that they’re choosing to taking part and can stop, or withdraw, their consent at any time.
You should put this information on the consent form the participant will sign, or verbally agree to, and give them a copy of this information to take away.
Making sure participants are actively informed
Making sure participants understand what they’re consenting to can be difficult. But you have an ethical obligation to do this.
These steps can help you confirm that the participant has understood what they’re consenting to:
- give them time to read and understand what is expected from them
- let them know what their responses will be used for and what the aims of the overall project are
- make sure they’re willing to take part and aren’t being pressured
- make sure they understand that they can stop the research or take a break at an time, and that the research is voluntary
Creating the consent form
After you explain what you’re doing, you must get participants’ written or verbal consent.
When you create the form:
- include everything that participants need to know, and make it easy to understand, otherwise you will not be getting informed consent.
- write in plain English and avoid jargon, legal or technical terms that might be hard to understand
- aim for a reading age of 11 years old, or Grade 5/6 — you can check by pasting your text into the free Hemingway Editor
This is a consent form template that can be used as a starting point.
Most participants give consent by signing the consent form.
If you’re filming or recording the session, or if the user finds reading or signing difficult, you can ask for their verbal consent. If you do this, you must:
- read out the consent information
- ask the participant to say their full name
- ask the participant if they agree to take part in your research
You must give participants the opportunity to refuse consent, even at the last moment. You must offer this in a respectful way, making it clear that ‘no’ is a reasonable response.
You should repeat the offer to withdraw participation at the beginning of each research session, so participants can avoid taking part in certain activities, or stop taking part altogether.
If this happens, you should thank them for their time. Once they’ve left, make sure you delete any information with their details on it, including the consent form if they signed it.
Think about all the places their details could be stored and delete these, including any recordings.
You should ask a participant to re-confirm their consent at the end of a session if, for example, you think they’re:
- uncomfortable about any information you’ve collected
- confused about how you’ll use the information
You must not collect, use or store data collected from a participant who’s been involved in your research if:
- they withdraw consent they’ve previously given you
- you’re not sure if you have their consent — for example, they seem confused about what they agreed
- you have lost their consent form
Getting consent from people with disabilities
If someone who has a disability is taking part in your research, make sure they can use and understand the consent information. Check with them the easiest way you can give it to them.
For example, would a digital version be best, so they can read the consent form using assistive technology? Would they need an alternative format, like Braille, or would an easy read version of the form be best?
If someone has a visual or cognitive impairment, you can offer to read the form aloud and ask if they need help signing it.
Getting consent for children or vulnerable adults
If you want to carry out research with children or vulnerable adults — people who are unable to take care of themselves, or are at risk of harm or exploitation — you need to get consent from a parent, guardian, carer or other responsible adult.
You need to think about the best way to give them enough information about the project so they can make an active and informed decision.
Archiving and deleting consent material
No matter how you get it, always keep evidence of consent.
You should store your signed consent forms, or equivalent audio/video material in secure storage, like a locked filing cabinet or secure document management system. The storage area should only be accessible by authorised staff.
We keep our consent forms and associated information for 2 years. You might want to extend the time depending on how long you think any possible issues associated with the project would take to be settled.
Destroy the consent forms once the storage period is over. Do this by secure disposal — not by regular disposal or recycling. No one should be able to access the contents.
Making changes to consent and collected data
You’ll need to ask participants to sign updated consent forms if there are changes to what they originally agreed to. For example, you change:
- the type of research activities
- the people who can see and use their personal data
- how the data will be used
You cannot use or share data from participants who do not consent to the new changes.