• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

基于人群的囊性纤维化携带者筛查模型选择中的伦理考虑。

Ethical considerations in choosing a model for population-based cystic fibrosis carrier screening.

机构信息

Austin Health, Melbourne, VIC, Australia.

出版信息

Med J Aust. 2010 Aug 2;193(3):157-60. doi: 10.5694/j.1326-5377.2010.tb03836.x.

DOI:10.5694/j.1326-5377.2010.tb03836.x
PMID:20678044
Abstract

Cystic fibrosis (CF) carrier testing can be used to inform reproductive decision making, allowing carriers to avoid having a child with CF. A government-funded, population-based CF carrier screening program would allow greater equity of access to this test. The setting in which CF carrier screening is offered significantly affects the extent to which participants make well informed, voluntary decisions to accept or decline testing. Screening offered before pregnancy and in non-clinical environments better promotes participant autonomy than screening offered in the prenatal consultation.

摘要

囊性纤维化(CF)携带者检测可用于为生殖决策提供信息,使携带者能够避免生育 CF 患儿。政府资助的基于人群的 CF 携带者筛查计划将使更多人能够公平地获得这项检测。CF 携带者筛查的实施环境极大地影响了参与者做出知情、自愿接受或拒绝检测的程度。与在产前咨询中提供的筛查相比,在怀孕前和非临床环境中提供的筛查更能促进参与者的自主权。

相似文献

1
Ethical considerations in choosing a model for population-based cystic fibrosis carrier screening.基于人群的囊性纤维化携带者筛查模型选择中的伦理考虑。
Med J Aust. 2010 Aug 2;193(3):157-60. doi: 10.5694/j.1326-5377.2010.tb03836.x.
2
Cystic fibrosis carrier population screening in the primary care setting.基层医疗环境中的囊性纤维化携带者群体筛查。
Am J Hum Genet. 1996 Jul;59(1):234-47.
3
Cystic fibrosis carrier screening in Veneto (Italy): an ethical analysis.意大利威尼托地区的囊性纤维化携带者筛查:一项伦理分析。
Med Health Care Philos. 2012 Aug;15(3):321-8. doi: 10.1007/s11019-011-9347-7.
4
Carrier screening for cystic fibrosis: a perinatal perspective.囊性纤维化的携带者筛查:围产期视角
J Perinat Neonatal Nurs. 1999 Sep;13(2):14-26. doi: 10.1097/00005237-199909000-00003.
5
Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process.囊性纤维化的遗传咨询与新生儿筛查:沟通流程评估
Pediatrics. 2001 Apr;107(4):699-705. doi: 10.1542/peds.107.4.699.
6
Outcomes of a cystic fibrosis carrier testing clinic for couples.针对夫妇的囊性纤维化携带者检测诊所的结果
Med J Aust. 2009 Nov 2;191(9):499-501. doi: 10.5694/j.1326-5377.2009.tb02913.x.
7
"Suddenly Having two Positive People who are Carriers is a Whole New Thing" - Experiences of Couples Both Identified as Carriers of Cystic Fibrosis Through a Population-Based Carrier Screening Program in Australia.“突然出现两名呈阳性的携带者是全新的情况”——澳大利亚一项基于人群的携带者筛查项目中,夫妻双方均被确诊为囊性纤维化携带者的经历
J Genet Couns. 2015 Dec;24(6):987-1000. doi: 10.1007/s10897-015-9833-9. Epub 2015 May 1.
8
Highlighting the impact of cascade carrier testing in cystic fibrosis families.强调级联携带者检测在囊性纤维化家族中的影响。
J Cyst Fibros. 2016 Jul;15(4):452-9. doi: 10.1016/j.jcf.2016.02.013. Epub 2016 Mar 22.
9
Genetic counseling after implementation of statewide cystic fibrosis newborn screening: Two years' experience in one medical center.全州实施囊性纤维化新生儿筛查后的遗传咨询:一家医疗中心的两年经验。
Genet Med. 2001 Nov-Dec;3(6):411-5. doi: 10.1097/00125817-200111000-00006.
10
Community-wide screening for cystic fibrosis carriers could replace newborn screening for the diagnosis of cystic fibrosis.对囊性纤维化携带者进行全社区筛查可替代新生儿筛查来诊断囊性纤维化。
J Paediatr Child Health. 2007 Nov;43(11):721-3. doi: 10.1111/j.1440-1754.2007.01224.x.

引用本文的文献

1
Pregnancy Planning and Genetic Testing: Exploring Advantages, and Challenges.备孕与基因检测:探讨其优势与挑战。
Genes (Basel). 2024 Sep 13;15(9):1205. doi: 10.3390/genes15091205.
2
Societal implications of expanded universal carrier screening: a scoping review.扩大普遍携带者筛查的社会影响:范围综述。
Eur J Hum Genet. 2023 Jan;31(1):55-72. doi: 10.1038/s41431-022-01178-8. Epub 2022 Sep 12.
3
Expanded genetic carrier screening in clinical practice: a current survey of patient impressions and attitudes.临床实践中的扩展基因携带者筛查:患者印象和态度的最新调查。
J Assist Reprod Genet. 2019 Apr;36(4):709-716. doi: 10.1007/s10815-019-01414-z. Epub 2019 Feb 13.
4
Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists' views.提供扩展携带者筛查的检测前和检测后咨询考量:欧洲遗传学家观点探究
BMC Med Ethics. 2017 Aug 1;18(1):46. doi: 10.1186/s12910-017-0206-9.
5
Outcomes of an International Workshop on Preconception Expanded Carrier Screening: Some Considerations for Governments.孕前扩大携带者筛查国际研讨会成果:对各国政府的一些考量
Front Public Health. 2017 Feb 24;5:25. doi: 10.3389/fpubh.2017.00025. eCollection 2017.
6
It's complicated: criteria for policy decisions for the clinical integration of genome-scale sequencing for reproductive decision making.情况很复杂:生殖决策中基因组规模测序临床整合的政策决策标准
Mol Genet Genomic Med. 2015 Jul;3(4):239-42. doi: 10.1002/mgg3.130.
7
Attitudes of cystic fibrosis patients and parents toward carrier screening and related reproductive issues.囊性纤维化患者及其父母对携带者筛查及相关生殖问题的态度。
Eur J Hum Genet. 2016 Apr;24(4):506-12. doi: 10.1038/ejhg.2015.160. Epub 2015 Jul 29.
8
"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening.“了解它是否值得?”焦点小组参与者对基因组孕前携带者筛查的感知效用
J Genet Couns. 2016 Feb;25(1):135-45. doi: 10.1007/s10897-015-9851-7. Epub 2015 Jun 21.
9
Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature.医疗保健专业人员对囊性纤维化携带者筛查的态度。文献综述。
J Community Genet. 2014 Jan;5(1):13-29. doi: 10.1007/s12687-012-0131-z. Epub 2012 Dec 29.
10
Preconception care and genetic risk: ethical issues.孕前保健与遗传风险:伦理问题
J Community Genet. 2012 Jul;3(3):221-8. doi: 10.1007/s12687-011-0074-9. Epub 2011 Dec 29.