Purpose
GARC seeks to make research participation respectful, understandable, accessible, and proportionate.
Participants Should Be Treated With
- dignity;
- respect;
- fairness;
- sensitivity;
- appropriate privacy;
- clear communication.
Voluntary Participation
Where participation is voluntary, individuals should be able to make an informed decision about whether to participate.
Declining participation should not result in inappropriate disadvantage.
Accessible Information
Participant information should, where practical, be adapted to the intended audience.
For autism-related research this may include consideration of:
- plain language;
- visual information;
- communication preferences;
- sensory environment;
- additional processing time;
- remote participation;
- support-person involvement where appropriate.
Participation Burden
Researchers should consider whether the time, complexity, travel, communication demands, sensory demands, or emotional burden placed on participants is proportionate to the value of the research.
Compensation
Where compensation, reimbursement, or incentives are offered, they should be described transparently and should not be structured in a manner that creates inappropriate pressure to participate.
Privacy
Participants should understand how information about them will be handled, subject to the applicable consent process and data governance requirements.
Returning Results
Where appropriate and feasible, projects should consider how participants or communities may receive accessible information about research outcomes.
Co-Production
Where appropriate, GARC encourages meaningful involvement of autistic people, families, practitioners, and relevant communities in shaping research priorities, tools, interpretation, and dissemination.
Participation should be meaningful rather than symbolic.