GE3LS – Attitudes of Adults and Adolescents to Predictive Genetic Testing for Diabetes

Genome-Environment Interactions in Type 1 Diabetes – Integrated GE3LS research

GE3LS sub-project leaders: Aideen Moore and Andrew Paterson, The Hospital for Sick Children

Project Summary
Type 1 diabetes (T1D) afflicts 200,000 Canadians and is the result of multiple genetic risk factors and currently unknown environmental factors. This innovative research project, led by Drs. Jayne Danska and Andrew Macpherson, aims to investigate the interactions of the genetic components and environmental factors underlying T1D.

GE3LS research summary
Recent research advances mean that Research Ethics Boards (REBs) are now reviewing protocols that involve predictive genetic testing in children.

While issues surrounding predictive genetic testing are clear in adults, there remain significant problems regarding the ethics of predictive testing in children. Further information on the acceptability and impact of predictive testing in children and adolescents and their families is required so as to allow REBs to better quantify risks and benefits of such studies.

The objectives of this research study include:

  • There is a high interest in predictive testing in both the diabetic and general community and that factors motivating predictive testing are different in adolescents than in adults.
  • In adults, the major motivating factors are related to their personal health. There is indication that adults may modify their behaviour to reduce risk of T1D based on predictive testing outcomes.
  • Adolescents tend to take predictive testing for altruistic reasons.
  • Siblings have an excellent knowledge base of diabetes and they can readily describe the long and short term consequences associated with the disease.
  • The child’s reaction to the affected sibling’s diagnosis was shock and emotional; they attempt to cope with a normalization process in describing their affected sibling and family life. These young people will also participate in caregiving and show more respect for their sibling with T1D.
  • These adolescents think the decision for predictive genetic testing is ultimately theirs to make, even though parents do have the right to know and should sit down and discuss with the child.

This information will help guide investigators, REB members and research participants on the key elements that need to be included in consent forms for research in T1D that includes predictive testing. Many other childhood diseases, including asthma and Crohn’s disease, are now understood to involve genome-environment interactions. Information gained will be generalisable to many other disorders and will be very important as other large population-based predictive studies are undertaken.