Strauss Ronald P
Department of Dental Ecology, University of North Carolina School of Dentistry, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599-7450, USA.
Cleft Palate Craniofac J. 2002 Mar;39(2):164-8. doi: 10.1597/1545-1569_2002_039_0164_beapda_2.0.co_2.
The advancing sophistication and availability of prenatal diagnostic technologies, such as transvaginal ultrasound, chorionic villus sampling, amniocentesis, and alpha feto-protein testing, have increased the medical capacity to detect genetic and congenital conditions during pregnancy. This paper raises many social and ethical questions about how families, craniofacial teams, and society respond when a prenatal diagnosis is made and considers the ethical and social issues around counseling, managing information, and making decisions.
Ethical and sociological analysis.
Implications examined on the societal, health professional, and family level.
Families and health professionals often manage ambiguity, uncertainty, and complex decision making in facing a prenatal diagnosis. Embedded in parental and clinical decisions are values about children with birth defects. Families are making decisions about whether to bear or abort an affected fetus on the basis of their perceptions of the impairment and on their expectation of the burden involved for the family and the child. On a broader, societal level, pressures to conform and minimize human differences are apparent in biomedical interventions, the Human Genome Project, advertising and media images, and social pressures to normalize disabilities. How society deals with prenatal diagnosis will impact upon social values; moral, legal, and ethical perspectives; and on health policy.
Prenatal diagnostic technologies raise complex ethical, family, policy, and legal issues that have broad implications for the lives of children born with special health care needs, including children with cleft lip and palate.
诸如经阴道超声、绒毛取样、羊膜穿刺术和甲胎蛋白检测等产前诊断技术日益精密且普及，这提高了孕期检测遗传和先天性疾病的医疗能力。本文提出了许多关于家庭、颅面治疗团队以及社会在做出产前诊断时如何应对的社会和伦理问题，并探讨了围绕咨询、信息管理和决策的伦理和社会问题。
伦理与社会学分析。
在社会、医疗专业人员和家庭层面探讨相关影响。
面对产前诊断时，家庭和医疗专业人员常常要应对不确定性、模糊性以及复杂的决策。父母和临床决策中蕴含着对出生缺陷儿童的价值观。家庭基于对缺陷的认知以及对家庭和孩子所涉负担的预期，决定是否生育或终止受影响胎儿的妊娠。在更广泛的社会层面，生物医学干预、人类基因组计划、广告和媒体形象中存在着要求顺应并尽量减少人类差异的压力，以及使残疾正常化的社会压力。社会如何应对产前诊断将影响社会价值观、道德、法律和伦理观念以及卫生政策。
产前诊断技术引发了复杂的伦理、家庭、政策和法律问题，这些问题对有特殊医疗需求的出生儿童的生活，包括唇腭裂儿童的生活，具有广泛影响。
