Mao X
Division of Genetics, Department of Psychiatry, West China University of Medical Sciences, Chengdu, China.
Am J Hum Genet. 1998 Sep;63(3):688-95. doi: 10.1086/302020.
To identify Chinese geneticists' views of ethical issues in genetic testing and screening, a national survey was conducted. Of 402 Chinese geneticists asked to participate, 255 (63%) returned by mail anonymous questionnaires. The majority of respondents thought that genetic testing should be offered in the workplace for alpha-antitrypsin deficiency (95%) and the predisposition of executives to heart disease, cancer, and diabetes (94%); that genetic testing should be included in preemployment physical examinations (86%); that governments should require premarital carrier tests (86%), newborn screening for sickle cell (77%), and Duchenne muscular dystrophy (71%); and that children should be tested for genes for late-onset disorders such as Huntington disease (85%), susceptibility to cancers (85%), familial hypercholesterolemia (84%), alcoholism (69%), and Alzheimer disease (61%). Most believed that partners should know each other's genetic status before marriage (92%), that carriers of the same defective gene should not mate with each other (91%), and that women should have a prenatal diagnosis if medically indicated (91%). The majority said that in China decisions about family planning were shared by the couple (82%). More than half had views that, in China, there were no laws to prohibit disability discrimination (64%), particularly to protect people with adult polycystic kidney disease (57%), cystic fibrosis (56%), or genetic predisposition to other diseases (50%). To some extent, these results might provide a basis for a discussion of eugenics in China, particularly about China's Maternal and Infant Health Care Law (1994).
为了了解中国遗传学家对基因检测和筛查中伦理问题的看法,我们开展了一项全国性调查。在受邀参与的402位中国遗传学家中,255位(63%)通过邮件回复了匿名问卷。大多数受访者认为,应在工作场所对α-抗胰蛋白酶缺乏症(95%)以及企业高管患心脏病、癌症和糖尿病的易感性(94%)进行基因检测;基因检测应纳入入职前体检(86%);政府应要求进行婚前携带者检测(86%)、新生儿镰状细胞病筛查(77%)和杜兴氏肌营养不良症筛查(71%);儿童应接受迟发性疾病相关基因检测,如亨廷顿舞蹈症(85%)、癌症易感性(85%)、家族性高胆固醇血症(84%)、酗酒(69%)和阿尔茨海默病(61%)。大多数人认为,伴侣在婚前应了解彼此的基因状况(92%),携带相同缺陷基因的人不应相互婚配(91%),并且如果有医学指征,女性应进行产前诊断(91%)。大多数人表示,在中国,计划生育的决定权由夫妻双方共同掌握(82%)。超过半数的人认为,在中国,没有法律禁止残疾歧视(64%),尤其是保护成年多囊肾病患者(57%)、囊性纤维化患者(56%)或其他疾病遗传易感性人群(50%)。在某种程度上,这些结果可能为中国优生学的讨论提供基础,特别是关于中国的《母婴保健法》(1994年)。