Population Screening Act: study of the quality of home genetic testing

Hogeschool Leiden has requested a permit under the Population Screening Act (Dutch: WBO) for a study called “Check the test” reviewing home genetic testing. The applicant wants to examine the quality of the results from various tests and of their interpretations. The applicant proposes designing the study as population screening by offering people various selected genetic tests carried out for free. These tests can find risk indicators for e.g. dementia and certain forms of cancer for which neither prevention nor treatment is currently possible. For this type of population screening a permit may only be granted if exceptional circumstances give reason to do so. The Health Council of the Netherlands’ Committee on Population Screening finds that this is not the case for the proposed study. The Committee is therefore recommending to the State Secretary of Health, Welfare and Sport that a permit should not be granted for the study.