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Chunk #65 — 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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It is not a coincidence that the most prominent policy initiatives related to research ethics today, such as the ongoing effort to revise the Common Rule22 and the recent research ethics report by the Presidential Commission for the Study of Bioethical Issues,23 focus in no small part on challenges that have been thrust into the limelight by human genome research. Issues such as those raised by gene-hunting research with banked human tissue samples, by family studies involving potent informational risks, or by genomic variation studies of human populations challenge our current views about the rights and interests of individual research participants. As the tools and strategies of genome research spread across the biomedical landscape, these challenges are becoming unavoidable. Fortunately, the ongoing work of the ELSI research community can provide the larger research ethics community an important head start on ensuring that its deliberations are well-informed and forward-looking.