One way this challenge was illuminated at the ELSI Congress was by explorations of benefit sharing and the reduction of health disparities as goals of translational genomic research [A-1; A-2; B-6, Courtwright]. Genomics research now takes place in an era when the potential beneficiaries of biomedical research have unprecedented knowledge of and advocacy regarding research agendas and the translation of findings into health benefits. Proponents of integrating stakeholders at every stage of the translational pathway argue that translation is less a linear than a cyclical process, and that integrating the assessments of multiple stakeholders into initial research design not only facilitates more democratic or “just” translation, but produces better science from the outset [A-1]. Another angle on these tensions was explored by several presenters for a panel examining the nature and limits of researcher obligations to participants [A-5, Caga-anan; A-5, Lehmann; A-5, Marsden]. In many instances, perhaps best exemplified by the return of results controversy [A-4], consensus conferences and similar efforts demonstrate the attempt to incorporate the views of stakeholder groups; without good empirical data, however, the value of consensus documents can remain an open question.
