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Chunk #62 — Conclusion

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What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
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Our review of presentations at the 2011 ELSI Congress identified three major, interrelated themes for contemporary research ethics. First, new forces are reshaping the boundaries between research and treatment, threatening to erase the dividing line initially set forth in the Belmont Report. This challenge, which dates back to the early, problematic distinction between “therapeutic” and “nontherapeutic” research,18 has long been recognized in oncology research,19 and has more recently become pervasive. Contributing trends in clinical research generally include the media’s role in promoting research results;20 the increasing roles that patients and communities now often take in research design and implementation; and communication of research results and incidental findings in studies of all sorts. Whether these changes are ultimately appropriate and beneficial is as yet unclear.