Bruce Lefroy Centre for Genetic Health Research, Royal Children's Hospital, Parkville, 3052, Victoria, Australia.
J Med Ethics. 2009 Dec;35(12):722-8. doi: 10.1136/jme.2009.030429.
The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children of deaf adults (or CODAs, as they call themselves, and are widely known in the deaf community) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants (CODAs and health professionals) as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf (or "culturally deaf") community. The similarities extended to their opinions regarding deafness not being a disability (45.5% believed deafness was a distinct culture rather than a disability), their ambivalence towards having hearing or deaf children (72.3% indicated no preference) and their general disapproval of the use of genetic technologies to select either for or against deafness (60% believed that reproductive technologies, when used to select for or against deafness, should not be available to the community).
选择残疾，尤其是耳聋，这一概念在主要利益相关者之间引发了一场有争议的、有时甚至是激烈的辩论。以前的研究集中在聋人和重听人士、卫生专业人员和伦理学家对耳聋的生殖选择的看法上。然而，这项研究是首例考察聋人成年子女对植入前基因诊断和产前诊断以选择或反对耳聋的看法的研究。聋人成年子女（或他们自称的“聋二代”，在聋人群体中广为人知）跨越了聋人和听力正常两个世界，这种双重视角使他们非常适合为关于使用基因选择赞成或反对耳聋的学术讨论增添内容。该研究采用了两个互补的阶段，最初使用半结构化访谈对主要知情者（聋二代和卫生专业人员）进行访谈，作为指导随后开发电子调查的手段，共有 66 人匿名完成了调查。这些参与者与聋人群体中的聋人（或“文化聋人”）有许多相同的观点。相似之处延伸到他们关于耳聋不是残疾的观点（45.5%的人认为耳聋是一种独特的文化，而不是残疾），他们对生育听力正常或耳聋孩子的矛盾态度（72.3%的人表示没有偏好），以及他们普遍反对使用基因技术来选择赞成或反对耳聋（60%的人认为，当生殖技术用于选择赞成或反对耳聋时，不应该向社区提供）。
