What is in a cause? Exploring the relationship between genetic cause and felt stigma
What is in a cause? Exploring the relationship between genetic cause and felt stigma
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DOI：
10.1097/01.gim.0000195894.67756.8b
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发表时间：
2006-01-01
影响因子：
8.8
通讯作者：
Schairer, C
中科院分区：
文献类型：
--
作者：
Sankar, P;Cho, MK;Schairer, C
目的：由于最近人类基因组计划导致的基因研究和测试的增加，对基因检测带来的耻辱的关注日益增加。然而，基因或遗传基础是否一定会给疾病带来耻辱仍未得到研究。方法：我们对86名患有以下四种疾病之一的患者进行了定性访谈研究：耳聋或听力损失、乳腺癌、镰状细胞病和囊性纤维化。前两组大约分为两组，一组将自己的状况归因于基因或遗传原因，另一组则没有。结果：受访者以各种方式解释遗传或遗传原因和非遗传原因。乳腺癌患者报告了最一致的遗传原因阴性解释。这种反应涉及未来的不健康，而不是持久的耻辱感。聋人和重听受试者对他们的情况提供了最一致的积极评论，认为遗传或遗传基础是他们的情况，将家族性听力损失视为群体和个人身份的重要组成部分。患有镰状细胞病和囊性纤维化的答复者对其病情的遗传原因提供了类似和积极的解释，因为这意味着他们的病情不会传染。结论：尽管一些受试者报告由于他们的病情而感到耻辱，但这种耻辱并不总是与疾病的原因、遗传或其他原因有关。相反，在特定疾病的生活经历背景下，耻辱从各种来源出现。
Purpose: Concern over stigma as a consequence of genetic testing has grown in response to the recent increase in genetic research and testing resulting from the Human Genome Project. However, whether a genetic or hereditary basis necessarily confers a stigma to a condition remains unexamined. Methods: We performed a qualitative interview study with 86 individuals with one of four conditions: deafness or hearing loss, breast cancer, sickle cell disease, and cystic fibrosis. The first two groups were divided approximately between people who ascribed their conditions to a genetic or hereditary cause and those who did not. Results: Respondents interpreted genetic or hereditary causes and nongenetic causes in a variety of ways. Subjects with breast cancer reported the most consistently negative interpretation of genetic cause. This response concerned future ill health, not an enduring sense of stigma. Deaf and hard of hearing subjects provided the most consistently positive comments about a genetic or hereditary basis to their condition, casting familial hearing loss as a vital component of group and individual identity. Respondents with sickle cell disease and cystic fibrosis offered similar and positive interpretations of the genetic cause of their condition insofar as it meant their conditions were not contagious. Conclusions: Although some subjects report feeling stigmatized as a result of their condition, this stigmatization is not uniformly associated with the condition's cause, genetic or otherwise. Instead, stigma emerges from a variety of sources in the context of the lived experience of a particular condition.