基因残疾成年人如何看待选择性生殖？损伤、身份认同与基因筛查。
How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening.
作者信息
Boardman Felicity K, Hale Rachel
机构信息
Warwick Medical School, Coventry, UK.
出版信息
Mol Genet Genomic Med. 2018 Nov;6(6):941-956. doi: 10.1002/mgg3.463. Epub 2018 Sep 9.
BACKGROUND
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.
METHODS
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.
RESULTS
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.
CONCLUSION
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.
背景
基因组医学正在迅速发展，尤其是在生殖领域。利用全基因组/外显子组测序对一系列疾病进行人群携带者筛查已成为可能。然而，对于成年基因残疾者对选择性生殖的看法却知之甚少。
方法
通过支持小组和诊所招募了43名患有不同类型基因疾病的成年人，进行了深入的定性访谈。访谈涵盖了参与者对自身疾病的经历以及他们对生殖基因干预的看法。使用NVivo 11对数据进行了主题分析，并将参与者分为对选择性生殖持支持、不支持或矛盾观点的类别。
结果
大多数参与者（65%）对选择性生殖表示反对或持矛盾态度。不支持的主要原因包括将基因损伤视为个人身份的一部分以及优先消除社会和环境障碍。支持选择性生殖的主要原因包括对基因损伤持消极和外化的态度以及相信知情生殖决策的重要性。
结论
参与者对自身损伤的认同程度，而非他们对损伤的重视程度，在决定对选择性生殖的态度方面具有重要意义。支持基因筛查的人将他们的损伤视为与自己分离的，而认为自己的损伤是其身份不可或缺一部分的参与者最有可能报告矛盾或消极的态度。在考虑基因携带者筛查小组的作用时，政策制定者和利益相关者在考虑基因筛查项目的可接受性和社会影响时，可能会有益地与受遗传疾病影响的成年人以及残疾身份政治进行接触。
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