New York University Langone Health.
National Institutes of Health.
Am J Bioeth. 2022 Feb;22(2):4-22. doi: 10.1080/15265161.2020.1867933. Epub 2021 Jan 18.
Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as a potential future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all.
产前基因检测可用于越来越广泛的疾病,父母在胎儿身上检测数百种(如果不是数千种)遗传疾病也只是时间问题。是否应该限制获取某些种类的胎儿基因信息?如果是,依据是什么?我们评估了一系列因素,包括生殖自主权、父母权利、残疾权利以及胎儿作为潜在未来儿童的权益。我们的结论是,父母应该能够获得怀孕期间可能有用的信息,但应该限制对非医疗信息的检测。接下来,我们认为政府在监管产前基因检测方面没有强有力的国家利益,并提出应该通过医疗专业组织进行监管。最后,我们提出了一个框架,用于确定医生应该推荐、中立提供还是根本不提供哪些检测。