Genetic profiling to inform people about their risk for dozens of diseases and traits comes with the assumption that identifying an increased risk could lead to preventive measures to reduce a person's risk for developing disease or to improve disease outcome. But little is known about the public's understanding and perceptions of such care, or what is really useful in day-to-day healthcare from the physician-patient perspective. We will present research that surveys the attitudes of early seekers of personalized genetic information by hearing from study participants themselves and a panel of experts covering the many aspects of this brave new world.
An ongoing collaborative study at the University of Pennsylvania School of Medicine and the Coriell Institute is probing the motivations of people who seek out this ultimately tailored information. The study is part of the Coriell Personalized Medicine Collaborative (CPMC), longitudinal research that involves participants giving a DNA sample and completing a series of medical history, family history, lifestyle, and medication questions. They then receive a risk assessment for common complex diseases, such as diabetes and heart disease, based on genetic risk factors as well as family history and lifestyle risk factors.
WHAT: |
Please join us for a writers’ roundtable to discuss these issues with study participants, and from a clinician, genetic counseling, and bioethics perspective. |
WHO: |
Roundtable Participants
- Dan Rader, MD, professor of Medicine and Pharmacology and director, Preventive Cardiovascular Medicine and Lipid Clinic at Penn, will discuss how genetic information can be used from a patient-physician perspective.
- Art Caplan, PhD, director of the Center for Bioethics at Penn, will discuss how genetic information might be used, abused, or both.
- Barbara Bernhardt, MS, CGC, genetic counselor and clinical associate professor of Medicine in Medical Genetics at Penn; co-investigator on the Penn study, will discuss study participants’ motivations for enrolling in the study and their attitudes toward their results.
- Michael F. Christman, PhD, president and CEO, Coriell Institute and principal investigator, CPMC, will talk about the overall CPMC study.
- Study participants will talk about what motivated them to participate in the study; how they might use their genetic information in the future to change their behavior; who they might share it with; and concerns about sharing it.
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WHEN: |
Wednesday, May 19, 2010: 8:30am – 11:00am
Discussion begins at 8:45am. Coffee and light refreshments offered at the start of the roundtable. |
WHERE: |
- New! Live streaming video webcast. A recording of the
event will also be available on demand via the link below for one year following the event.
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HOW: |
Please register to attend in person by contacting Karen Kreeger at 215-349-5658 or karen.kreeger@uphs.upenn.edu. Space is limited.
Media RSVPs for the webcast are also appreciated. |
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