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FRIMED-Klinisk medisin og folkehelse

Psychosocial effects and understanding of increased risk for Type 1 Diabetes

Tildelt: kr 2,8 mill.

With the rapid development in biotechnology and increasing knowledge about the relation between diseases and genetic variability, we are faced with both new opportunities and new dilemmas. Onset of a disease is dependent on several factors as genetic pene trance, combinations of genotypes and environmental factors that either may provoke or protect against onset of a disease. The use of tests that gives us knowledge about the risk and possibilities for illness in the future is supposed to increase. This ra ises many fundamental questions of ethical, legal and psychosocial character. In the MIDIA study the children with the highest genetic risk for Type 1 Diabetes (T1D) are identified, and the aim is to follow-up 2000 children with the high-risk genotype (DRB1*0301-DQA1*0501-DQB1*0201/DRB1*0401-DQA1*0301-DQB1*0302) from the first year of life to 15 years of age with stool samples, blood samples and questionnaires. 2.7% of new-borns carry the high-risk genotype, and have a 17% lifetime risk for development of T1D. The aim of this research project is to study knowledge among pregnant women and public health nurses with respect to predictive genetic testing and risk information for T1D. To study the impact of risk information both at the time of notification and over long time measured as stress and anxiety. In addition we will study reasons for the obtained results by interviewing mothers. The level will be analysed with respect to potential influencing factors such as age, socio-economic status and experie nce with T1D. The MIDIA project has access to baseline as well as longitudinal levels of anxiety and depression since approx. 40% of mothers of MIDIA children also participate in the pregnancy cohort study MoBa. Knowledge and attitude to predictive geneti c testing will also be studied. The results of this project will give valuable knowledge about genetic risk information and effects of predictive testing for T1D and multifactorial diseases in general.


FRIMED-Klinisk medisin og folkehelse