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体外受精诊所网站上的植入前基因诊断:风险、益处及其他信息的呈现

Preimplantation genetic diagnosis on in vitro fertilization clinic websites: presentations of risks, benefits and other information.

作者信息

Klitzman Robert, Zolovska Beata, Folberth William, Sauer Mark V, Chung Wendy, Appelbaum Paul

机构信息

College of Physicians and Surgeons and Mailman School of Public Health, Columbia University, New York, New York.

Columbia University Medical Center, Columbia University, New York, New York.

出版信息

Fertil Steril. 2009 Oct;92(4):1276-1283. doi: 10.1016/j.fertnstert.2008.07.1772. Epub 2008 Sep 30.

DOI:10.1016/j.fertnstert.2008.07.1772
PMID:18829009
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2950118/
Abstract

OBJECTIVE

To examine information on preimplantation genetic diagnosis (PGD) presented on IVF clinic websites.

DESIGN

We systematically sampled every third IVF clinic on the 2004 Centers for Disease Control provider list.

SETTING

The Internet.

PATIENT(S): None.

INTERVENTION(S): None.

MAIN OUTCOME MEASURE(S): Benefits, risks, and other types of information mentioned regarding PGD.

RESULT(S): Of 135 sites examined, 88.1% had websites, and 70% mentioned PGD, of which 27% were university- or hospital-based and 63% were private clinics. Sites mentioning PGD listed uses and benefits of PGD far more than the risks involved. Of these sites, 76% described testing for single-gene diseases, but fewer mentioned risks of missing target diagnoses (35%) or risks for loss of embryo (18%), and 14% described PGD as new or controversial. Private clinics were more likely than other programs to be on either the East or West Coast, list certain PGD risks (e.g., diagnostic error), note that PGD was new or controversial, reference source of PGD information, provide accuracy rates of genetic testing of embryos, and offer gender selection for social reasons.

CONCLUSION(S): Most IVF clinics advertise PGD online, but the scope and quality of information about it varies widely, emphasizing benefits while minimizing risks. Clinics and patients may benefit from more thorough and consistent presentation of PGD, drawing on available evidence to best provide a realistic portrayal of PGD.

摘要

目的

研究体外受精(IVF)诊所网站上提供的关于植入前基因诊断(PGD)的信息。

设计

我们在2004年疾病控制中心的医疗机构名单中,系统地抽取了每第三个IVF诊所。

地点

互联网。

患者

无。

干预措施

无。

主要观察指标

提及的PGD的益处、风险及其他类型的信息。

结果

在检查的135个网站中,88.1%有网站,70%提及了PGD,其中27%是大学或医院所属诊所,63%是私人诊所。提及PGD的网站列出PGD的用途和益处的频率远高于所涉及的风险。在这些网站中,76%描述了单基因疾病检测,但较少提及漏诊目标诊断的风险(35%)或胚胎丢失的风险(18%),14%将PGD描述为新的或有争议的。私人诊所比其他机构更有可能位于东海岸或西海岸,列出某些PGD风险(如诊断错误),指出PGD是新的或有争议的,引用PGD信息来源,提供胚胎基因检测的准确率,并提供出于社会原因的性别选择。

结论

大多数IVF诊所都在网上宣传PGD,但关于它的信息范围和质量差异很大,强调益处而将风险最小化。诊所和患者可能会从更全面和一致地呈现PGD中受益,利用现有证据以最好地提供PGD的真实描述。

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