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.

Public Health 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.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003389-10
Application #
8634809
Study Section
Special Emphasis Panel (ZHG1-HGR-P (J1))
Program Officer
Mcewen, Jean
Project Start
2004-09-01
Project End
2015-02-28
Budget Start
2014-03-01
Budget End
2015-02-28
Support Year
10
Fiscal Year
2014
Total Cost
$1,032,709
Indirect Cost
$386,531
Name
Stanford University
Department
Social Sciences
Type
Schools of Medicine
DUNS #
009214214
City
Stanford
State
CA
Country
United States
Zip Code
94305
Steinbach, Rosemary J; Allyse, Megan; Michie, Marsha et al. (2016) "This lifetime commitment": Public conceptions of disability and noninvasive prenatal genetic screening. Am J Med Genet A 170A:363-74
Floyd, Erin; Allyse, Megan A; Michie, Marsha (2016) Spanish- and English-Speaking Pregnant Women's Views on cfDNA and Other Prenatal Screening: Practical and Ethical Reflections. J Genet Couns 25:965-77
Berryessa, Colleen M (2016) Brief Report: Judicial Attitudes Regarding the Sentencing of Offenders with High Functioning Autism. J Autism Dev Disord 46:2770-3
Berryessa, Colleen M (2016) Judges' views on evidence of genetic contributions to mental disorders in court. J Forens Psychiatry Psychol 27:586-600
Michie, Marsha; Kraft, Stephanie A; Minear, Mollie A et al. (2016) Informed decision-making about prenatal cfDNA screening: An assessment of written materials. Ethics Med Public Health 2:362-371
Berryessa, Colleen M; Milner, Lauren C; Garrison, Nanibaa' A et al. (2015) Impact of Psychiatric Information on Potential Jurors in Evaluating High-Functioning Autism Spectrum Disorder (hfASD). J Ment Health Res Intellect Disabil 8:140-167
Minear, Mollie A; Alessi, Stephanie; Allyse, Megan et al. (2015) Noninvasive Prenatal Genetic Testing: Current and Emerging Ethical, Legal, and Social Issues. Annu Rev Genomics Hum Genet 16:369-98
Cho, Mildred K (2015) Preventive Genomic Sequencing in the General Population: Do PGS Fly? Am J Bioeth 15:1-2
Sankar, Pamela L; Cho, Mildred K (2015) Engineering Values Into Genetic Engineering: A Proposed Analytic Framework for Scientific Social Responsibility. Am J Bioeth 15:18-24
Allyse, Megan; Sayres, Lauren Carter; Goodspeed, Taylor et al. (2015) "Don't Want No Risk and Don't Want No Problems": Public Understandings of the Risks and Benefits of Non-Invasive Prenatal Testing in the United States. AJOB Empir Bioeth 6:5-20

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