NIH Sep 1, 2004 | P50

Center for Integrating Ethics & Genetic Research

Principal Investigator(s): Cho, Mildred

Institution: Stanford Center for Biomedical Ethics

FOA Number: RFA-HG-03-005

Abstract

The Center for Integration of Research on Genetics and Ethics (CIRGE) was established in 2004. The overall goal of CIRGE is the proactive identification and integration of ethical, legal and social considerations into the design and conduct of current and emerging genetic research. Our thematic focus is on genomics of behavioral traits. The aims of CIRGE in this renewal application are to: 1) Conduct interdisciplinary ELSI research that informs policy regarding the conduct and translation of research on the genomics of behavior; 2) Develop an anticipatory approach to integrate ethics, policy and research on the genomics of behavior by linking the process of research on the genomics of behavior with the ELSI research and policy agendas; and 3) Train interdisciplinary ELSI researchers who are fluent in genomics, ethics and policy. CIRGE will serve as a nexus between stakeholders and end-users of the research on the genomics of behavior, genome scientists, and the ELSI research community. We will create a forum for integrating ethical and social considerations into specific areas of genomic research through: 1) "prognostic" normative analyses that identify the values, principles and assumptions implicated by research, technology and their applications, 2) empirical analyses to map relevant genomic research and technology and identify stakeholders, 3) empirical analyses to assess relevant features of the ethical, legal or social context, such as how different stakeholders think genome information or technology will be used, should be used, is perceived, or who it might benefit or harm, 4) "diagnostic" normative analyses to assess whether and how genomic research and technology supports or undermines stakeholder values, and 5) feedback of normative and empirical ELSI findings into research and development priorities, design criteria or other requirements. These processes can inform the design and application of genome research to enhance benefit and utility to end-users and facilitate translation to clinical and non-medical uses. CIRGE's innovation will be in developing a process for coordinating ELSI research agendas around specific focus areas in genomic research, and for translating the ELSI research findings into design features of genomic research and technology. RELEVANCE: CIRGE's aims to facilitate the appropriate and ethical translation of research on the genomics of behavior in a way that serves the needs and values of end users and stakeholders, including patients, clinicians, and health policy makers. (Co-fund with DOE)

FUNDING AGENCY:

Funder:
NIH

Institute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTE

Funding Type:
P50

Project Number:
P50HG003389

Start Date:
Sep 1, 2004

End Date:
Jul 31, 2009

PROJECT TERMS:

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