Taking part in research should always be a real choice. Information must be understandable, and saying no must feel safe.

What respectful consent looks like
  • People need information in a form that works for them.
  • Consent is a conversation, not only a signed form.
  • A person can change their mind.

Questions you can take with you

You do not need to become an expert. These questions can help you talk with a professional or support provider.

  • Can the information be made clearer or more visual?
  • How can the person show yes, no or stop?
  • What happens if they change their mind?
Want the study details?Sample, method and evidence type
Focus
Informed consent
Principle
Ongoing choice
Method
Participatory
The fuller explanation

Read on for what was studied, what was found and what remains uncertain.

01

Consent is more than a signature

Informed consent should mean that a person understands the study, chooses freely and can change their mind. Standard research documents often make that harder through length, jargon and rigid procedures.

The WIRE Consortium draws lessons from work with autistic people and people with intellectual disability to make both materials and conversations more accessible.

02

What accessibility can look like

Research teams can offer plain-language text, visual or audio formats, extra processing time, supported decision-making and repeated check-ins. Participants should know how to pause or withdraw without pressure.

The right format varies from person to person. Offering choice is more useful than assuming one ‘easy read’ document works for everyone.

03

Questions participants can ask

Can I see the information before deciding? Can someone I trust join the conversation? How will you check that I still agree? What happens if I stop? Will leaving affect my care or services?

Clear answers are a sign of good study practice. Confusion or pressure is a reason to pause.

Limitations to keep in view

  • These are practice guidelines, not a trial comparing consent methods.
  • Local law and ethics requirements still apply.
  • Accessibility must be individualized; no checklist guarantees understanding.

A careful next step

Ask for information in the format and pace you need before agreeing to a study.

Original source

Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability

Beck KB, MacKenzie KT, Kirby AV, et al.; WIRE Consortium

Autism in Adulthood · 2025

PMID 40979614DOI 10.1089/aut.2024.0263
Open the source

This article provides general information and does not replace individualized medical, psychological or educational advice.