期刊
ACCOUNTABILITY IN RESEARCH-POLICIES AND QUALITY ASSURANCE
卷 18, 期 3, 页码 132-147出版社
TAYLOR & FRANCIS INC
DOI: 10.1080/08989621.2011.575032
关键词
disease research; Internet; personal genomics
While the availability of genome tests on the internet has given rise to heated debates about the likely impact on personal genome information on test-takers, on insurance, and on healthcare systems, in this article I argue that a more tangible effect of personal genomics is that it has started to change how participation in disease research is conceived and enacted. I examine three models of research participation that personal genomics customers are encouraged to engage in. I conclude with an evaluation of the pitfalls and benefits of ocrowdsourcingo genetic disease research in the context of personal genomics.
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