Community Consultation as an Ethics Method

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DESCRIPTION (provided by applicant): Over the past decade researchers, institutions and research sponsors have engaged in various forms of discourse with minority and indigenous populations in the US 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. Millions of dollars are being spent on consultations. 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. This project aims to provide theoretical grounding for the practice of community consultation. A working group of 18 scholars from diverse disciplines, and individuals from frequently studied populations, will engage in a deliberative process of discourse, argumentation, reflection and writing to answer questions regarding community consultation. The group's deliberation will be supplemented with interview data describing researchers' and participants' experiences with consultations. The group will propose guidelines by which IRBs and other research oversight entities can determine whether a protocol requires accompanying consultation, and by which reviewers can determine whether a proposed consultation is likely to achieve stated ethics or policy goals. This project wilt yield several manuscripts aimed at professional, policy and public (non-expert) audiences.