Events and Lectures
Throughout the year, CIRGE holds events and lectures open to Stanford students, faculty, staff and the general community. The hope is to continue the discussions from previous CIRGE symposia and to begin dialogue on new engaging topics.
Wednesday, March 17, 2010: CIRGE Seminar with Amy McGuire, JD, PhD
Genomic Data Sharing: Ethics, Policy, and Participant Perspectives
4 - 5:30PM
Munzer Auditorium, Beckman Center
CIRGE is pleased to welcome Dr. Amy McGuire who is an Associate Professor of Medicine and Medical Ethics as well as the Associate Director of Research at the Center for Medical Ethics and Health Policy, Baylor College of Medicine.
Since the beginning of the Human Genome Project, genomic information generated during the course of research has been viewed primarily as a community resource, with broad data sharing policies adopted for large scale sequencing studies and federally-funded genome wide association studies (GWAS). Yet, most of these policies were developed with little input from members of the public and in the absence of data on participant perspectives. Dr. McGuire discussed genomic data sharing policies and presented data on participants’ attitudes toward, judgments about, and decisions regarding sharing data in genetic association studies. A randomized study of three different types of consent offering varying levels of control over the decision about data sharing was completed with 330 participants from six genetic-association studies at Baylor College of Medicine. A follow-up survey with 250 participants provided insight into participants’ judgments about the risks and benefits of data sharing, broad access to genomic information, and desired information and control over data sharing decisions.
Additional materials:
Event Flyer (PDF)
Friday, March 5, 2010: CIRGE Seminar with Timothy Caulfield, LLM, FRSC
Race and Genetics Research: Who's Saying What?
Noon - 1:30PM
SCBE Conference Room (701 Welch Rd, Bldg A, Ste 1113)
CIRGE was pleased to welcome Professor Timothy Caulfield who is the Canada Research Chair in Health Law & Policy, Senior Health Scholar with the Alberta Heritage Foundation for Medical Research, Professor, Faculty of Law and School of Public Health, and Research Director, Health Law Institute, University of Alberta.
During this seminar, Professor Caulfield described the results of recent research that traces the use of language about race in genetics research from peer reviewed journals to press releases to newspaper reports.
Additional materials:
Event Flyer (PDF)
Thursday, October 8, 2009: CIRGE Seminar with Dr. Michael Christman
Using Personal Genome Information in Clinical Care:
Challenges and Approaches in the
Coriell Personalized Medicine Collaborative
3-4:30PM
Clark Center Room S361
Michael F. Christman, Ph.D. is the President and Chief Executive Officer of the Coriell Institute for Medical Research based in Camden, New Jersey. During this one and a half hour event, he described, and answered questions about, the Coriell Personalized Medicine Collaborative (CPMC).
CPMC is a prospective research study that employs an evidence-based approach to examine the utility of personal genome information for health management and clinical decision-making. The CPMC aims to build a cohort with rich genotypic and phenotypic data in order to discover genetic variants that affect drug toxicity and efficacy and to reveal presently unknown gene variants that increase the risk of cancer and other complex diseases[1]. Through a secure web portal, participants will learn of personalized risks, both genetic and non-genetic and be surveyed for behavioral outcomes. The study will enroll 10,000 individuals by the end of 2009 with an ultimate goal of 100,000 participants. As of April 2009, there were ~4,000 participants enrolled in the study. There is no charge to study participants.
To complete this study, Coriell has partnered with Cooper University Hospital, Fox Chase Cancer Center, Virtua Health, Ohio State University, scientists, ethicists, genetic counselors, volunteer study participants and information technology experts. The overall aim of this collaborative effort is to better understand the impact of genome-based medicine and to explore its ethical, legal and social implications[2].
[1] “Personalized Health Care: Pioneers, Partnerships, Progress.” A report prepared by the Initiative on Personalized Health Care under Federal HHS Secretary Michael O. Leavitt.
Full Text >>
[2]
Prainsack P., Reardon J., Hindmarsh R., Gottweis H., Naue U. and J.E. Lunshof. Personal genomes: misdirected precaution. Nature, 2008. 456(7218): 34-5.
Abstract >>
Additional materials:
Event Flyer (PDF)
Dr. Christman's PowerPoint Presentation
from this event (PPT)
More on CPMC >>
Friday, September 11, 2009: A Discussion with Lord Naren Patel
The July 2009 UK Genomic Medicine Report
9-10:30AM
Munzer Auditorium, Beckman Center
This one and a half hour event, co-sponsored by CIRGE, the Stanford Center for Biomedical Ethics, and the Stanford Law School Center for Law and the Biosciences, featured a discussion with Lord Naren Patel, followed by a Q&A session.
Lord Patel chaired the UK House of Lord’s Science & Technology Committee Inquiry into Genomic Medicine, which was completed in July 2009. The Committee asked how, in the context of competing priorities within the healthcare services, advances in genomic medicine might contribute most effectively to improvements in public health and quality of life: Are health services in a position to take advantage of these new scientific advances? Can – indeed should – their translation into clinical practice be afforded? Do the appropriate ethical and regulatory frameworks exist to both protect the interests of individuals and encourage further advances? Will such advances bring with them new economic opportunities and, if so, is the government doing enough to ensure that those opportunities are exploited?
During this event, Lord Patel will provide an overview of the report and its recommendations to the UK government. He will also talk about his views on a variety of issues, including the growing direct-to-consumer genetic testing industry, regulation related to efficacy and validity of genetic tests, and the gap in training for medical professionals.
Additional materials:
Event Flyer (PDF)
Full UK Genomic Medicine Report >>
Tuesday, November 18, 2008: A Film Screening with Joanna Rudnik
In the Family
6:30-8:30PM
Clark Center Auditorium
This event, co-sponsored by SCBE, the Stanford Cancer Center, the Program in Bioethics and Film, MS in Human Genetics & Genetic Counseling, the Film and Media Studies Program, the Department of Art & Art History and KQED, featured a screening of the new film, In the Family, followed by a Q&A session with the filmmaker, Joanna Rudnick.
When Ms. Rudnick was twenty-seven, she tested positive for the "breast cancer gene." Although knowing the information could save her life, she faces an incredibly difficult decision: should she remove her healthy breasts and ovaries now or risk markedly elevated odds of developing cancer later?
Additional materials:
Event Flyer (PDF)
Watch the film trailer here.
Monday, September 8, 2008: A Lecture with Dr. Eric Turkheimer
The Gloomy Prospect Wins: Statistical Significance and Population Stratification in Genome Wide Association Studies
4-5PM
Munzer Auditorium, Beckman Center
This one-hour lecture by Dr. Eric Turkheimer of the Department of Psychology of the University of Virginia explored the following:
The contemporary era has seen a convergence of genomic technology and traditional social scientific concerns with complex human individual differences. Rather than finally turning social science into a replicable hard-scientific enterprise, genomics has gotten bogged down in the long-standing frustrations of social science. A recent report of an extensive genome wide association study of human height demonstrates the profound difficulties of explaining uncontrolled human variation at a genomic level. The statistical technologies that have been brought to bear on the problem of genomic association are simply modifications of similar methods that have been used by social scientists for decades, with little success. The motivation for the statistical methods in genomics is the same as it is in traditional social science: An attempt to discern linear causation in complex systems when experimental control is not possible.
Listen to Dr. Turkheimer's lecture here (.wav file)
View the corresponding PowerPoint slides here (PPT)
Explore the citable Nature Precedings posting here
Additional materials:
Event Flyer (PDF)
See Dr. Turkheimer at the May 2008 Capturing Complexity Symposium (Panel 2)
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