2012年9月翻譯考試高級口譯下半場閱讀理解Saq第二篇

　　A better way of signing up for studies of your genes 考試網(wǎng)(www．Examw。com)

　　IN AN age where people promiscuously post personal data on the web and regularly click “I agree” to reams of legalese they have never read, news of yet another electronic consent form. might seem like a big yawn. But for the future of genomics-related research the Portable Legal Consent, to be announced shortly by Sage Bionetworks, a non-profit research organisation based in Seattle, is anything but mundane. Indeed, by reversing the normal way consent to use personal data is acquired from patients in clinical trials, it could spell a new relationship between scientists and the human subjects of their research, with potential benefits that extend well beyond genomics.

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　　The heart of Portable Legal Consent is the notion that anyone who signs up for a clinical trial, or simply has his genome read in order to anticipate the risk of disease, should easily be able to share his genomic and health data not just with that research group or company, but with all scientists who are prepared in turn to accept some sensible rules about how they may use the data. The main one of these is that the results of investigations which include such “open source” data must, themselves, be freely and publicly available. In much the same vein as the open-source-software movement, the purpose of this is to increase the long-term value of the data, by allowing them to be reused in ways that may not even have been conceived of at the time they were collected.

　　That approach contrasts with today's system of secretive data silos for particular studies of specific diseases. Patients sometimes discover that they have even signed away their rights to see their own data.

　　That may serve the narrow interests of a research group or drug company intent on keeping competitors at bay. But the potential of genomic data to provide further insights, perhaps in completely novel contexts, is huge—especially when correlated with a person's medical record. Also, teasing out correlations between particular genotypes and diseases in a statistically meaningful way requires large sets of data; the larger the set, the more believable the correlations. Portable Legal Consent brings the promise of very large data sets indeed.