Parent Plain Language Statement
AUSTRALIAN CHILDHOOD DIABETES DNA REPOSITORY
Parent Plain Language Statement
Why Do We Seek Your Help?
We invite you and your child to participate in the Australian Childhood Diabetes DNA Repository. This will allow research to identify genes or immune markers that predispose to type 1 diabetes or to type 2. Both types of diabetes tend to run in families. This means that certain genes we inherit from our parents may increase or decrease the risk of developing diabetes.
For type 1 diabetes, the most important of these genes are called HLA genes, which regulate our immune defense system, eg to fight infections. Type 1 diabetes is more common in people with particular types of HLA genes. Nevertheless, most people with the "high risk" HLA genes will never develop diabetes. We now know that other non-HLA genes are also involved in predisposing people to type 1 diabetes and we are trying to identify these.
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 can identify genes which increase the risk of 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 your child and you for more blood samples. No identifying information about your child or you will ever be released to other investigators outside the hospital. The only people who will have access to your child's and your personal details 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 disclosed 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 Is Eligible To Join The Repository?
Families with a child with either type 1 or type 2 diabetes are invited to participate. We would like to obtain a saliva sample from your child and from each of the parents.
What Do We Ask Of You?
We ask for about 3-4mls (less than a teaspoon) of saliva from each person, 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 your child or you and is quite easy and simple. For those who find it hard to produce the amount of saliva required you can place 1/4 teaspoon of sugar on your tongue or else pretend that you are eating something and this may make it easier. 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 participants cannot be identified by name, by researchers outside your nearest recruiting clinic. The saliva will be sent to the Western Australian Institute for Medical Research where DNA is extracted and banked. Fractions of the coded DNA will be provided to properly qualified Australian researchers, with separate ethics approvals, to identify diabetes susceptibility genes and genes linked to diabetes complications and related autoimmune diseases. Your child's/your DNA will not be used for any other purpose without your further consent. The data collected is only for the use of researchers at your nearest recruiting clinic, and is not disclosed to WAIMR, or other researchers outside your nearest recruiting clinic.
Participation Is Voluntary
It is important that you understand that your child's/your participation is completely voluntary. Whether or not you/your child participate(s) in this project, any future care you/your child receives at your Hospital will not be affected in any way. Also, if you decide to participate but later change your mind, you are free to do so, and again this will in no way affect the treatment that you/your child receives 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, Ee Juen (EJ) Leong on 61 (08) 9224 0340 or participating Diabetes Clinics.
