Dunne C, Warren C
New England Retinoblastoma Family Foundation, Watertown, MA, USA.
Issues Law Med. 1998 Fall;14(2):165-202.
In this article, Cara Dunne and Catherine Warren challenge the current role of genetic counselors in advising expectant mothers about potential genetic defects of their fetuses. They show that genetic counselors sometimes provide one-sided negative information to women undergoing prenatal diagnosis of genetic variants. This biased information promotes abortion of what are considered "defective" fetuses. The misleading information provided by the genetic counselors and the termination of the pregnancies is akin to the eugenics movement. The authors describe the early 20th century eugenics movement, explore the origin and development of the Human Genome Project, analyze the current role of genetic counseling, and explain the importance of the informed consent process to the exercise of autonomy. Dunne and Warren conclude by offering methods by which to restructure the informed consent mechanism to offer a more balanced assessment of the risks and benefits associated with genetic disability.
在本文中,卡拉·邓恩和凯瑟琳·沃伦对遗传咨询师目前在为孕妇提供有关胎儿潜在基因缺陷的建议方面所扮演的角色提出了质疑。他们指出,遗传咨询师有时会向接受基因变异产前诊断的女性提供片面的负面信息。这种有偏见的信息促使人们打掉被认为是“有缺陷”的胎儿。遗传咨询师提供的误导性信息以及终止妊娠的行为类似于优生学运动。作者描述了20世纪初的优生学运动,探讨了人类基因组计划的起源和发展,分析了遗传咨询目前的作用,并解释了知情同意程序对行使自主权的重要性。邓恩和沃伦最后提出了一些方法,通过这些方法来重组知情同意机制,以便对与基因残疾相关的风险和益处进行更平衡的评估。