We surveyed genetics professionals, patients, and the public about rights to information, to requested services, and to parenthood, posing difficult cases found in practice. In all, 2906 genetics professionals (63%), 499 primary care physicians (59%), 476 North American genetics patients (67%), 394 French patients (51%), 593 German patients (65%), and 988 members of the American public (99%) returned anonymous questionnaires. Results suggest a trend toward increased respect for patient autonomy since an earlier survey in 1985; in most nations more would perform prenatal diagnosis for a couple with 4 daughters who desire a son. A minority (35% in U.S., 14% elsewhere) would perform PND for a deaf couple who want a deaf child, but most (94% in U.S., 62% elsewhere) would do prenatal paternity testing in the absence of rape or incest. About half (51%) would support a woman with fragile X who wants children. The trend to respect patient autonomy was greatest in the U.S. and was least evident in China and India. In general, responses to these cases illustrate a shift away from population or eugenic concerns to a model of genetics focused on the individual.

译文

我们调查了遗传学专业人员,患者和公众的知情权,要求服务和父母身份,在实践中发现了困难的案例。共有2906遗传学专业人员 (63%),499初级保健医生 (59%),476北美遗传学患者 (67%),394法国患者 (51%),593德国患者 (65%) 和988美国公众 (99%) 返回匿名问卷。结果表明,自较早的调查1985年以来,人们越来越尊重患者的自主权; 在大多数国家,更多的人会对一对有4个女儿的夫妇进行产前诊断,他们希望有一个儿子。少数族裔 (在美国35%,在其他地方14%) 会为想要一个聋哑孩子的聋哑夫妇执行PND,但大多数 (在美国94%,在其他地方62%) 会在没有强奸或乱伦的情况下进行产前亲子鉴定。大约一半 (51%) 会支持一个想要孩子的脆弱X女人。尊重患者自主权的趋势在美国最大,而在中国和印度则最不明显。总的来说,对这些情况的反应说明了从人口或优生关注转向针对个人的遗传学模型的转变。

+1
+2
100研值 100研值 ¥99课程
检索文献一次
下载文献一次

去下载>

成功解锁2个技能,为你点赞

《SCI写作十大必备语法》
解决你的SCI语法难题!

技能熟练度+1

视频课《玩转文献检索》
让你成为检索达人!

恭喜完成新手挑战

手机微信扫一扫,添加好友领取

免费领《Endnote文献管理工具+教程》

微信扫码, 免费领取

手机登录

获取验证码
登录