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匿名遗传咨询与检测的必要性。

The need for anonymous genetic counseling and testing.

作者信息

Mehlman M J, Kodish E D, Whitehouse P, Zinn A B, Sollitto S, Berger J, Chiao E J, Dosick M S, Cassidy S B

机构信息

Law-Medicine Center, Case Western Reserve University School of Law, Cleveland, OH, USA.

出版信息

Am J Hum Genet. 1996 Feb;58(2):393-7.

Abstract

Concerns are mounting about the risks of genetic discrimination resulting from the release of predictive and presymptomatic genetic test results to employers, insurers, and others. The ability to keep this information confidential is questionable, particularly in view of the expansion of electronic medical databases. One solution is to afford individuals access to anonymous genetic counseling and testing. Probands would be identified only by a code that would not reveal personal information, and test results would be stored, retrieved, and released solely on the basis of this code. The experience with anonymous HIV testing, while not completely analogous, suggests that such an approach would be both practical and effective.

摘要

对于向雇主、保险公司及其他方面透露预测性和症状前基因检测结果所导致的基因歧视风险,人们越来越担忧。对这些信息保密的能力令人质疑,尤其是考虑到电子医疗数据库的扩大。一种解决办法是让个人能够获得匿名的基因咨询和检测。先证者仅通过一个不会泄露个人信息的代码来识别,检测结果将仅基于此代码进行存储、检索和发布。匿名艾滋病毒检测的经验虽不完全类似,但表明这种方法既切实可行又有效。

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