The Hopkins Centre and AHRECS, have created a booklet to participation in research for people with a disability.

Called, 'Deciding whether to participate in research: A community resource for Australians who live with a disability', the project and this booklet was informed by a community/consumer reference group of Australians who live with a disability.

Research can be beneficial (sometimes greatly so) in areas such as health, medicine, care and support. However, inadvertently or otherwise, sometimes it can also disrespect the agency of people living with a disability and even perpetuate discrimination, exclusion and paternalistic attitudes. It is therefore important that appropriate processes are in place to ensure that research is meaningful, ethical, and beneficial to research participants living with a disability.

This booklet aims to support potential research participants who live with a disability to:

• Make an informed decision about whether to take part in a research project
• Be empowered throughout the research process.
• Ask questions and speak up about individual needs to ensure researchers respect the rights of participants.
• Make decisions that ensure researchers treat individuals as participants, rather than just as subjects.
• The information in this guide is informed by the community it aims to help; it is based on the attitudes and experiences of people with a disability.

Being involved in research is voluntary. This means that you must freely decide for yourself whether you want to take part. Every person who is asked to be involved in research needs to weigh the cost of being involved against the benefit gained. This booklet will help potential
research participants to do this.

Click here to download the document.