How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening.
How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening.
复制标题
DOI：
10.1002/mgg3.463
复制
发表时间：
2018-11
影响因子：
2
通讯作者：
Hale R
中科院分区：
文献类型：
--
作者：
Boardman FK;Hale R
基因组医学正在迅速发展，特别是在生殖领域。使用全基因组/外显子组测序对一系列疾病的人群携带者进行筛查正在成为可能。然而，关于遗传残疾成年人对选择性生殖的看法，我们知之甚少。通过支持团体和诊所招募了43名患有不同类型遗传疾病的成年人，进行了43次深入的定性访谈。采访包括参与者对他们的病情的经历以及他们对生殖基因干预的看法。使用NVivo 11对数据进行了专题分析，参与者被分配了支持、不支持或对选择性生殖持矛盾观点的类别。大多数参与者(65%)对选择性生殖表示不赞成或持矛盾的观点。不支持的主要原因包括认为遗传损害是个人身份的一部分，以及优先考虑消除社会和环境障碍。支持选择性生殖的主要原因包括对遗传损害持负面和外在化的态度，以及相信知情的生殖决策的重要性。参与者对自己的损害的认同程度，而不是他们对损害的评价，在决定对选择性生殖的态度方面具有重要意义。那些支持基因筛查的人认为他们的损害与他们自己是分开的，而那些认为他们的损害是他们身份不可分割的参与者最有可能报告矛盾或消极的态度。考虑到遗传携带者筛查小组的作用的政策制定者和利益攸关方在考虑基因筛查计划的可接受性和社会影响时，可能会有益地与受遗传病和残疾身份政治影响的成年人接触。
Genomic medicine is rapidly evolving, particularly in the domain of reproduction. Population carrier screening for a range of disorders is becoming possible using whole genome/exome sequencing. However, very little is known about the views of genetically disabled adults toward selective reproduction. Forty‐three in‐depth qualitative interviews were carried out with adults living with different types of genetic condition, recruited through support groups and clinics. Interviews covered participants’ experiences of their condition and their views toward genetic intervention in reproduction. Thematic analysis of the data using NVivo 11 was undertaken, and participants were assigned categories as either supporting, not‐supporting, or having ambivalent views toward selective reproduction. The majority of participants (65%) expressed either disapproval of, or held ambivalent views toward, selective reproduction. Key reasons for non‐support included regarding genetic impairment as part of personal identity and the prioritization of social and environmental barrier removal. Key reasons for support of selective reproduction included negative and externalizing attitudes toward genetic impairment and a belief in the importance of informed reproductive decision‐making. The degree to which participants identified with their impairment, more so than how they valued it, was significant in determining attitudes toward selective reproduction. Those who supported genetic screening viewed their impairment as separate to themselves, while participants who considered their impairment as integral to their identity were most likely to report ambivalent or negative attitudes. Policymakers and stakeholders considering the role of genetic carrier screening panels might usefully engage with adults affected by heritable disease as well as disability identity politics when considering the acceptability and social impact of genetic screening programs.
登录
查看更多内容
影响因子：
1.9
作者：
Farrelly, Ellyn;Cho, Mildred K.;Ormond, Kelly
通讯作者：
Ormond, Kelly
影响因子：
1.9
作者：
Boardman FK;Young PJ;Griffiths FE
通讯作者：
Griffiths FE
影响因子：
1.9
作者：
Ioannou, Liane;Delatycki, Martin B.;Lewis, Sharon
通讯作者：
Lewis, Sharon
影响因子：
8.8
作者：
Hantash, Feras M.;Goos, Dana M.;Strom, Charles M.
通讯作者：
Strom, Charles M.
影响因子：
2.9
作者：
Kelly, Susan E.
通讯作者：
Kelly, Susan E.