Caplan Arthur L
Director, Division of Medical Ethics, NYU Langone Medical Center, New York, New York, United States of America.
PLoS Biol. 2015 Aug 6;13(8):e1002219. doi: 10.1371/journal.pbio.1002219. eCollection 2015 Aug.
Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.
自20世纪70年代初以来,指导参与与生殖相关的基因疾病检测和筛查的咨询师的道德规范一直是严格的中立。关于生殖遗传学的咨询应以患者为中心,但不具有指导性。许多唐氏综合征患者的倡导者认为,诊断出这种疾病后高堕胎率表明对唐氏综合征患者存在无端偏见。这些倡导者成功推动了联邦和州立法,要求接受唐氏综合征产前诊断的女性获得有关该疾病的积极信息,从而结束了价值中立咨询这一表面目标,并随着因无细胞检测而使咨询范围扩大,为临床生殖遗传学的进一步规范转变奠定了基础。