UW Law School professor Pilar Ossorio has been awarded a million-dollar grant from the National Institute of Health to conduct a major project investigating the practice of community consultation as a method in applied research ethics. Ossorio holds a joint appointment with the Medical School's Department of Medical History and Bioethics.
The grant, which will run for three years, will enable Ossorio and approximately 19 other scholars from diverse disciplines to form a working group that will study the way in which researchers, institutions and research sponsors engage in various forms of discourse with minority and indigenous populations in the U.S. and abroad. These "community consultations" are an increasingly common adjunct to genetics research, particularly for projects aiming to create a repository of tissues and information for use by multiple researchers, with numerous different protocols, over an extended time period.
Community consultation may achieve goals not attainable through individual informed consent and standard ethics review, such as the minimization of third-party harms mediated by membership in or identification with a study population. Consultations can inform potential research participants and study populations about human genetics/genomics research and about particular protocols. They are also intended to elicit feedback regarding potential participants? relevant values, preferences, concerns and/or judgments.
Although numerous community consultations are underway, there is no agreement on which ethics and policy goals consultation can address, and which methods of consultation are best for addressing particular goals. There is little agreement as to what should trigger consultations, or the standards by which oversight bodies should evaluate them.
Ossorio's project aims to provide theoretical grounding for the practice of community consultation. The working group's deliberation will be supplemented with interview data describing researchers' and participants' experiences with consultations.
Ossorio is principal investigator of the grant. Co-principal investigators are professors Dan Hausman of the philosophy department and Joan Fujimura of the sociology department.
Submitted by on May 11, 2004
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