Inzicht en toezicht: controle in de kennissamenleving

Nieuwe technieken maken het opslaan en verwerken van informatie eenvoudiger. Sterker\ud nog: ze maken de weg vrij om gegevens vast te leggen voordat duidelijk is welk inzicht\ud we eigenlijk nastreven. Toezicht wint zo terrein ten opzichte van de kennisverwerving.\ud \ud Voorbeelden van toenemend toezicht zijn elektronische dossiers over burgers,\ud informatievergaring door de politie en in private initiatieven zoals Google Earth. Deze\ud systemen maken het mogelijk om op grote schaal verbanden te ontdekken en afwijkingen op\ud te sporen, zonder dat er duidelijke kennisvragen aan vooraf gaan.\ud \ud De relatie tussen inzicht en toezicht is bepalend voor hoe we met de verzamelde kennis\ud omgaan. Ligt de nadruk daarbij op inzicht, overzicht, toezicht, of nog iets anders? Dit\ud Jaarboek Kennissamenleving 2010 stelt kritische vragen bij de alomtegenwoordige blik van\ud toezicht. Het draagt ideeën aan om deze in de toekomst anders te richten, zodat inzicht en\ud toezicht in balans kunnen blijven

Genetic screening and democracy: lessons from debating genetic screening criteria in the Netherlands

Recent decades have witnessed increasing possibilities for genetic testing and screening. In clinical genetics, the doctor’s office defined a secluded space for discussion of sensitive reproductive options in cases of elevated risk for genetic disorders in individuals or their offspring. When prenatal screening for all pregnant women became conceivable, the potential increase in scale made social and ethical concerns relevant for the whole of society. Whereas genetic testing in clinical genetic practice was widely accepted, prenatal screening at a population level met with unease. Concerns were raised regarding social pressure to screen: the sum of individual choice might result in a ‘collective eugenics’. The government’s involvement also raised suspicion: actively offering screening evoked associations with eugenic population policies from the first half of the 20th century. By reconstructing elements of policy and public debate on prenatal screening in the Netherlands from the past 30 years, this article discusses how the government has gradually changed its role in balancing the interest of the individual and the collective on genetic reproductive issues. Against a background of increasing knowledge about and demand for prenatal screening among the population, governmental policy changed from focusing on protection by banning screening toward facilitating screening in a careful and ethically sound way by providing adequate information, decision aids and quality assessment instruments. In the meanwhile, invigorating democracy in public debate may entail discussing concepts of ‘the good life’ in relation to living with or without impairments and dealing with genetic information about oneself or one’s offspring