Changing the Subject: Educating Research Participants What do you need to know before agreeing to share your genome with the world?

George Church

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Changing the Subject: Educating Research Participants What do you need to know before agreeing to share your genome with the world?

机译：改变主题：教育研究参与者在同意与世界分享基因组之前，您需要了解什么？

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GeneWatch: The Personal Genome Project requires that all participants are "informed." What does informed participation mean in this setting? What does a participant need to know before becoming involved in medical genetic research, particularly when their information may become public?George Church: In principle, all medical research has the participant sign a consent form. In practice, many-if not most-principal investigators acknowledge that they don't feel the participants have read it or understood it, which we didn't feel was a good idea. So we have an entrance exam, 20 questions, and participants have to get 100%. The exam covers what would be in the consent form, maybe a little more elaborate than a consent form but a little easier to read.

机译：GeneWatch：个人基因组计划要求所有参与者都“知情”。在这种情况下，知情参与意味着什么？参与者在参与医学遗传研究之前，尤其是在他们的信息可能公开之前，需要了解什么？乔治教堂：原则上，所有医学研究都应让参与者签署同意书。在实践中，许多（如果不是大多数）主要研究者都承认他们不觉得参与者已经阅读或理解了它，我们认为这不是一个好主意。因此，我们有入学考试，20个问题，并且参与者必须达到100％。考试内容涵盖了同意书中的内容，可能比同意书中的内容更为详尽，但更易于阅读。

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《Genewatch :》 |2013年第3期|共2页
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George Church;
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Changing the Subject: Educating Research Participants What do you need to know before agreeing to share your genome with the world?

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