[What is IYDS?] [Project Description] [Aims and Objectives] [Procedures] [Consent and Privacy]

Taking part in research studies: What are your rights?

A research study is a way of finding answers to difficult scientific or health questions. For example, we want to understand more about the healthy development of young people in the United States and Australia. To do this, we continue to survey students about their lives to try and learn what is different and what is the same about growing up in two different countries. This year we will be surveying participants from the middle cohort in the Australian arm of our study.

People who take part in research studies are called research participants or human subjects. As a research participant, you should know the following:

Your rights as a research participant

As a participant in a research study, you have the right to:

• Be told what the study is trying to find out and what will happen to you, and what you will be asked to do before you decide whether or not to take part in the study.
• Be told about any possible risks and any possible benefits of being in the study.
• Have enough time to decide whether or not to be in the research study and to make that decision without any pressure from the people who are conducting the research.
• Be told who will have access to information collected about you, and how your confidentiality or privacy will be protected.
• Be told who to contact if you have questions about the research or your rights as a research participant.
• Refuse to be in the study at all or to stop participating at any time after you begin the study.

Questions you may have

To help keep you informed about your rights, here are some answers to questions you or your family might have:

Who protects my rights as a research participant?
University rules require that we present all of our study procedures, questionnaires, letters and other forms for review and approval by an Institutional Review Board in Washington and an Ethics Review Board in Victoria. These groups are responsible for reviewing all research involving people and assuring the safety, rights, and welfare of research participants.

For more information about research ethics or human subjects approval, please visit the Deakin University Human Research Ethics Committee website. 

How do you keep my information confidential? 

Our staff are trained to protect the privacy of the people who participate in our research studies. We identify all information you give us by a code number rather than your name. Results from the study will only be reported in summary form and will not in any way identify individual participants. Only the researchers directly involved with the study will have access to private information. Participants’ responses and names will remain completely confidential and will never be identified in any report.