Participant Plain Language Statement
AUSTRALIAN CHILDHOOD DIABETES DNA REPOSITORY
Participant Information Sheet
Why Do We Seek Your Help?
We invite you and your parents to participate in the Australian Childhood Diabetes DNA Repository. This will allow research to find substances in your blood known as genes or immune markers that may increase your chances of getting type 1 or type 2 diabetes. Both types of diabetes have been found to run in families. What this means is that the genes that we get from our parents can increase or decrease the risk of developing diabetes.
For type 1 diabetes, the most important of these genes are called HLA genes, which help our immune system, eg to fight infections. Type 1 diabetes is more common in people with particular types of HLA genes. However most people with the "high risk" HLA genes will never develop diabetes. This is because other non-HLA genes are also involved in increasing people's chances for developing type 1 diabetes and we are trying to find out what these genes may be.
We know even less about the genes that increase the risk of developing type 2 diabetes. By testing DNA samples from families affected by diabetes, we may be able to find those genes that increase the risk of developing this disease. Identification of diabetes genes is important as it will help us to understand better why some people become diabetic, and help researchers to develop new treatments.
What Is The Repository?
The Repository stores samples of DNA, and keeps information about the genetic and other relevant tests, eg for immune markers, in a database, for ongoing and future diabetes research. Diabetes researchers, with the approval of relevant Ethics Committees, can then apply to access this Repository rather than asking you and your family for more blood samples. No identifying information about you will ever be released to other investigators outside the hospital. The only people who will have access to information about you are the diabetes researchers in your nearest recruiting clinic who are involved in this study. The only time that the information on the database will be given to a third party is when it is required or authorised by law; or when necessary to prevent or lessen a serious or imminent threat to someone's life, health or safety.
Who Can Join The Repository?
Families with a child with either type 1 or type 2 diabetes can participate.
What Do We Ask Of You?
We ask for about 3-4mls (less than a teaspoon) of saliva from each participant, which will be collected in a special bottle that we will supply. (This avoids the need to collect a blood sample). Giving the sample poses no significant physical risk to you. It is important that you rinse your mouth with water first - otherwise we will collect DNA from the food you last ate!!
What Happens Next?
The saliva sample is coded so that you cannot be identified by name, by researchers outside your nearest recruiting clinic The saliva will be sent to the Western Australian Institute of Medical Research so that the DNA can be extracted from your saliva and kept safe. Parts of the coded DNA will only be provided to properly qualified Australian diabetes researchers, with separate ethics approvals, to identify genes linked to diabetes and their complications as well as related autoimmune diseases. Your DNA will not be used for any other purpose without your permission. The family history data collected is only for the use of researchers at your nearest recruiting clinic and is not disclosed to any other researchers.
Participation Is Voluntary
It is important that you understand that you do not have to participate if you do not want to, and this will not affect your care at your hospital. Also, if you decide to participate but later change your mind, you can withdraw at any time and your DNA sample will be destroyed.
If You Would Like Any Extra Information?
If there are any questions either now or in the future, please do not hesitate to contact the Network Co-ordinator, Sarah Lilley on +61 (08) 9224 0340 or participating Diabetes Clinics.
