Modern genetic research gives us unprecedented ability to understand and manipulate fundamental biological processes. Our growing potential to understand and shape the world in genetic terms also seriously challenges basic beliefs and ethical norms. At the same time, values and norms affect the way genetic research is designed and conducted. Despite the significant ethical and societal implications of emerging genetic research, there are few venues for geneticists to participate in interdisciplinary research and to discuss these issues. The overall goal of this proposal is to create a Center for Integrating Ethics and Genetic Research (CIEGR) to develop and test new models of deliberative, interactive processes that integrate ethical, legal and social considerations into the design and conduct of current and emerging genetic research. CIEGR will achieve these goals through a number of innovative programs and products: 1) The Program for Integrated ELSI Research (PIER), which will identify and conduct research on ethical, legal and social issues, focusing on two areas of genetic research (human genetic variation and neuro- and behavioral genetics), and develop educational materials and policy guidance; 2) a Benchside Consultation Program BCP) for genetic researchers seeking real-time consultation to anticipate and develop policy guidance to address ethical, legal or social issues that could arise from current or future research and that are not addressed by other institutional mechanisms; 3) a Training and Education Program that will train four postdoctoral scholars in both genetic and ELSI research, and use the ethical issues identified by PIER and BCP as the basis for producing educational materials for genetic and ELSI researchers. These will include two documentary training films on research ethics, issue briefs, policy guidance, and webcasts of a series of Interactive Dialogs. The new models will be widely adoptable and will enable unprecedented consideration of genetic research ethics issues among the research community and the public.

Agency
National Institute of Health (NIH)
Institute
National Human Genome Research Institute (NHGRI)
Type
Specialized Center (P50)
Project #
5P50HG003389-05
Application #
7493608
Study Section
Special Emphasis Panel (ZHG1-HGR-P (M1))
Program Officer
Mcewen, Jean
Project Start
2004-09-01
Project End
2010-03-31
Budget Start
2008-08-01
Budget End
2010-03-31
Support Year
5
Fiscal Year
2008
Total Cost
$726,579
Indirect Cost
Name
Stanford University
Department
Social Sciences
Type
Schools of Medicine
DUNS #
009214214
City
Stanford
State
CA
Country
United States
Zip Code
94305
Berryessa, Colleen M (2017) Educator of the Court: The Role of the Expert Witness in Cases Involving Autism Spectrum Disorder. Psychol Crime Law 23:575-600
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:363-374
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) Judges' views on evidence of genetic contributions to mental disorders in court. J Forens Psychiatry Psychol 27:586-600
Berryessa, Colleen M (2016) Brief Report: Judicial Attitudes Regarding the Sentencing of Offenders with High Functioning Autism. J Autism Dev Disord 46:2770-3
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
Lappé, Martine (2016) The maternal body as environment in autism science. Soc Stud Sci 46:675-700
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
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
Cho, Mildred K (2015) Preventive Genomic Sequencing in the General Population: Do PGS Fly? Am J Bioeth 15:1-2

Showing the most recent 10 out of 76 publications