Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study
Disability Experiences and Perspectives Regarding Reproductive Decisions, Parenting, and the Utility of Genetic Services: a Qualitative Study
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DOI：
10.1007/s10897-018-0265-1
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发表时间：
2018-12-01
影响因子：
1.9
通讯作者：
Ignagni, E.
中科院分区：
文献类型：
--
作者：
Roadhouse, C.;Shuman, C.;Ignagni, E.
遗传咨询师扮演着看似矛盾的角色：一边为有遗传疾病的人辩护，一边提供产前诊断和选择性终止妊娠的选择，以防止残疾儿童的出生。这种二元性导致了残疾和临床遗传学社区之间的紧张关系。在残疾人群体中存在着不同的观点：一些人重视遗传服务，而另一些人则反对。然而，在个人经验的背景下，探索残疾人对生殖和遗传服务相关问题的意见的研究有限。这项探索性质的研究包括对自认为有残疾的七名女性和三名男性的访谈。我们试图获得他们对残疾经历的看法，对生育和养育子女的想法，以及对遗传服务的看法。访谈笔录采用定性内容分析进行主题分析。数据分析表明，社会对残疾的看法影响了残疾人的生活体验和生育决策。他们对遗传服务也表现出不同的兴趣。也有人提出对遗传服务的集体影响的关切。这些发现有助于理解残疾视角对生殖决策和遗传服务的影响。另一个目标是促进遗传学和残疾人社区之间进行有意义的对话，从而有可能加强向残疾人提供的遗传和生殖保健。
Genetic counselors adopt seemingly contradictory roles: advocating for individuals with genetic conditions while offering prenatal diagnosis and the option of selective termination to prevent the birth of a child with a disability. This duality contributes to the tension between the disability and clinical genetics communities. Varying opinions exist amongst the disability community: some value genetic services while others are opposed. However, there is limited research exploring the opinions of individuals with a disability regarding issues related to reproduction and genetic services in the context of personal experience. This exploratory qualitative study involved interviews with seven women and three men who self-identify as having a disability. We sought to gain their perspectives on experiences with disability, thoughts about reproduction and parenting, and perceptions of genetic services. Transcripts of the interviews were analyzed thematically using qualitative content analysis. Data analysis showed that societal views of disability affected the lived experience and impacted reproductive decision-making for those with a disability. It also showed differing interest in genetic services. Concerns about the perceived collective implications of genetic services were also raised. These findings contribute to the understanding of the disability perspective toward reproductive decision-making and genetic services. A further goal is to promote a meaningful dialogue between the genetics and disability communities, with the potential to enhance the genetic and reproductive care provided to individuals with disabilities.