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Chinese geneticists’ views of ethical issues in genetic testing and screening: evidence for eugenics in China

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    Mao reports the results of the responses of 63% (255) of 402 Chinese geneticists who participated in a national survey designed to identify their views on the ethical issues involved in genetic testing and screening. The Chinese geneticists differ in almost every area from their North American and west European counterparts, and the degree of polarisation may at first seem astonishing to geneticists working in developed countries who have a fundamental objection to eugenics. The Chinese respondents strongly favoured offering genetic testing at work for α1-antitrypsin deficiency (95%) and for genetic predisposition to heart disease, cancer, and diabetes in executives (94%). A total of 86% wanted genetic testing included in pre-employment physical examinations and 86% also felt that the government should require premarital carrier tests. Newborn screening tests for sickle cell disease (77%) and Duchenne muscular dystrophy (71%) were recommended and, perhaps most surprisingly, 85% felt that children should be tested for late onset disorders such as Huntington’s disease. In the western world there is almost universal opposition to testing children for genetic susceptibility to late onset disorders because of a fundamental respect for the autonomy of the child, but most Chinese geneticists favoured such testing on the grounds that parents should be able to decide for their children and should have the power to direct their children’s lives. This cultural division reflects the extent of individual autonomy in developed countries including the preservation of the autonomy of minors. In China, the child is seen as part of the family, rather than as a potentially autonomous person. Traditionally, China is a very paternalistic society and parents have absolute power to make family decisions. Most Chinese geneticists believed that partners should know each other’s genetic status before marriage (92%) and 91% believe that carriers of the same recessive gene should not have children; 91% felt that a woman at risk of having a child with a genetic condition should have prenatal diagnosis. Finally, more than half of the respondents felt that there were no laws in China to prevent discrimination on the grounds of disability. The frankly eugenic views expressed are hard for western geneticists to begin to comprehend because they are so diametrically opposed to our own. The word “eugenics”, when translated into Chinese, apparently means “well-bear and well-rear”. Chinese geneticists believe eugenics implies processes designed to ensure that children who are born are, as far as possible, normal, and they strive to achieve this in the context of a strict limitation in the size of population growth and a fundamental lack of resources. They feel that their goal is “improvement in population quality, decrease in population quantity and the furtherance of eugenic principles”. In the accompanying editorial, Knoppers tries to understand how such diametrically opposing views could have arisen on opposite sides of the world. Primarily, the argument is between the North American ideal of individualism at all costs versus communitarian values. However, it is important to acknowledge that even though the rights of people with genetic disorders may be more freely acknowledged in the west, such people do not necessarily receive better care, particularly in countries where large numbers of people have no access to free health care.