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Direct-to-Consumer Genomics and Research Ethics: Should a More Robust Informed Consent Process Be Included?

机译:直接面向消费者的基因组学和研究伦理:是否应包括更鲁棒的知情同意程序?

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摘要

An important issue raised in the article by Lee and Crawley (2009) is whether direct-to-consumer (DTC) genomics, specifically personal genome testing (PGT) should be considered research. The authors state that DTC genetic companies are creating new models of research where social networking tools will allow consumers to group themselves around particular diseases or conditions and participate directly in biomedical research. One hope is that such networking will speed the acquisition of knowledge about genomics.
机译:Lee和Crawley(2009)在文章中提出的一个重要问题是,是否应考虑直接面向消费者(DTC)的基因组学,特别是个人基因组测试(PGT)。作者指出,DTC遗传公司正在创建新的研究模型,其中的社交网络工具将使消费者能够围绕特定的疾病或状况分组自己,并直接参与生物医学研究。一种希望是,这样的联网将加快对基因组学知识的获取。

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