van El Carla Geertruida, Pieters Toine, Cornel Martina
Section Community Genetics, Department of Clinical Genetics and EMGO Institute for Health and Care Research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands,
J Community Genet. 2012 Apr;3(2):79-89. doi: 10.1007/s12687-011-0063-z. Epub 2011 Aug 30.
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.
近几十年来，基因检测和筛查的可能性不断增加。在临床遗传学中，医生办公室为讨论个体或其后代患遗传疾病风险升高情况下的敏感生殖选择定义了一个私密空间。当对所有孕妇进行产前筛查变得可行时，规模的潜在扩大使社会和伦理问题与整个社会相关。虽然临床遗传实践中的基因检测被广泛接受，但在人群层面的产前筛查却引发了不安。人们对筛查的社会压力提出了担忧：个人选择的总和可能导致“集体优生学”。政府的参与也引发了怀疑：积极提供筛查会让人联想到20世纪上半叶的优生人口政策。通过重构过去30年荷兰产前筛查政策和公众辩论的要素，本文讨论了政府如何在基因生殖问题上逐渐改变其在平衡个人和集体利益方面的角色。在公众对产前筛查的了解和需求不断增加的背景下，政府政策从专注于通过禁止筛查进行保护转变为通过提供充分信息、决策辅助工具和质量评估工具，以谨慎且符合伦理的方式促进筛查。与此同时，在公众辩论中振兴民主可能需要讨论与有或无损伤生活以及处理关于自己或后代的基因信息相关的“美好生活”概念。
