The feasibility of personal genome mapping, both in technical and financial terms, has increased significantly in recent years. From a medical perspective, genome analysis provides an important avenue for unravelling the mechanisms of disease and providing treatment. But genome analysis raises as many questions as it does solutions. To meet this challenge, seven Belgian institutions (KU Leuven, Antwerp, Ghent, UCL, ULB, ULg and VUB) are joining forces to create the Belgian Medical Genomics Initiative (BeMGI), a knowledge network for the study of medical genomics and genetics.
Cooperation in the field of genomics and genetics is crucial, explains Professor Gert Matthijs of the Centre for Human Genetics: "There is the need for streamlined technical development across the various centres in Belgium. Genome analysis requires powerful and expensive equipment, and new developments in the field happen quickly. It is important to be able to share technology, especially bioinformatics technology. Cooperation can also occur on a clinical level – via genome comparisons, for instance."
"Every human being is genetically unique and that makes it difficult to distinguish between the causes of diseases and ordinary expressions of variation. By exchanging – anonymous – clinical data, we can make progress in terms of both scientific research and diagnosis and treatment."
National consensus
"Further, all of our genetics research centres face the same social, legal and ethical questions. Instead of searching for answers to these questions separately, we want to reach a national consensus via BeMGI. This clarifies our position for third parties, particularly for the government which must decide on whether to reimburse genetic tests."
What issues are still contested? "Should we screen everyone for disorders that only express later in life, and how do we proceed prudently with such a policy? Currently, there is no (clinical) reason to require universal screening because the genome-based predictions are not entirely accurate. And what about sharing results? Should an individual’s genome analysis be made available to insurance companies and/or employers? What about accidental findings? Suppose you carry out a genetic test for intellectual disability on a child but you inadvertently find a defect in the breast cancer?"
These questions undoubtedly resonate across the larger society. Actress Angelina Jolie underwent a preventative mastectomy because she is a carrier of a mutation in the breast cancer gene. But each case is different. Some gene variations lead to disease with 100 per cent certainty, but not all do. Many gene mutations only increase your risk, that is, your susceptibility to a disease in combination with environmental factors. Genome analysis is not a good predictor for diseases in which environmental factors, including lifestyle, also play a role, warns Professor Matthijs.
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