Abstract
BackgroundDiabetes Mellitus is a global health problem. Scientific knowledge on the genetics of diabetes is expanding and is more and more utilised in clinical practice and primary prevention strategies. Health consumers have become increasingly interested in genetic information. In the Netherlands, the National Genetic Research and Information Center provides online information about the genetics of diabetes and thereby offers website visitors the opportunity to ask a question per email. The current study aims at exploring people's need of (additional) information about the role of inheritance in diabetes. Results may help to tailor existing clinical and public (online) genetic information to the needs of an increasing population at risk for diabetes.MethodsA data base with emailed questions about diabetes and inheritance (n = 172) is used in a secondary content analysis. Questions are posted in 2005-2009 via a website providing information about more than 600 inheritable disorders, including all diabetes subtypes. Queries submitted were classified by contents as well as persons' demographic profiles.ResultsQuestions were received by diabetes patients (49%), relatives (30%), and partners (21%). Questioners were relatively young (54.8% ≤ 30 years) and predominantly female (83%). Most queries related to type 1 diabetes and concerned topics related to (future) pregnancy and family planning. Questioners mainly asked for risk estimation, but also clarifying information (about genetics of diabetes in general) and advice (mostly related to family planning) was requested. Preventive advice to reduce own diabetes risk was hardly sought.ConclusionsGenetic information on diabetes provided by professionals or public health initiatives should address patients, as well as relatives and partners. In particular women are receptive to genetic information; they worry about the diabetes related health of (future) offspring. It seems important that information on the contribution of genetics to type 1 diabetes is more readily available. Considering the high prevalence of type 2 diabetes with strong evidence for a genetic predisposition, more effort seems needed to promote awareness around familial clustering and primary prevention.
Highlights
Diabetes Mellitus is a global health problem
Half of the questions were asked by diabetes patients (n = 77; 48.9%); almost one third by relatives (n = 47; 29.6%) and the remaining by partners of diabetes patients (n = 34; 21.5%)
Thirteen participants inquired about T1DM as well as T2DM (8.2%), since they seemed confused about the presence of both diabetes subtypes in their family
Summary
Scientific knowledge on the genetics of diabetes is expanding and is more and more utilised in clinical practice and primary prevention strategies. Results may help to tailor existing clinical and public (online) genetic information to the needs of an increasing population at risk for diabetes. Scientific knowledge on the genetics of diabetes is expanding and has resulted in Health consumers have become increasingly interested in genetic information [10,11]. This increasing interest is coupled with a growing trend in consumer uses of the Internet for health-related purposes. Of all inhabitants using the Internet, 54% looked for information about health and medicines at least once in three months in 2009 [13]
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