SC CTSI Explores Ethical Duties That Are Owed To Patients Who Participate in Biorepositories
Dr. Carlos Pato will describe the policies that guide the Center for Genomic Psychiatry at USC.
Do you make use of clinical data and biological samples from patients to conduct your research? Do you store information in the course of taking care of patients or refer patients to colleagues who are setting up a registry or biobank to collect information for future scientific works? If your examination of such information turned up something that could be important for the health of a patient, should you provide the information to the patient or withhold it?
Dr. Carlos Pato will describe the policies that guide the Center for Genomic Psychiatry at the University of Southern California (USC) and an extensive network of academic medical centers that have created the Genomic Psychiatry Cohort (GPC) (n=33,000).
The GPC resource includes an NIMH-managed repository of genomic samples, genotypic and sequence data, and detailed clinical and demographic data for investigations of schizophrenia and bipolar disorder. The GPC has ascertained and recruited a large clinical cohort of patients with schizophrenia (n=10,000), patients with bipolar disorder (n=5,000), family members (n=3,000), and control participants with no history or family history of schizophrenia or bipolar disorder (n=15,000).
Formed from an initial population of ~10,000 participants from earlier studies by Dr. Pato's group, the GPC has enrolled an additional 23,000 participants (~9,000 Caucasian, ~5,000 African American, ~8,000 Latino,~1,000 other) over the past four years. In order to assure ongoing careful assessment of phenotype and the possibility of future studies, cohort members are informed that they may be re-contacted and are given the opportunity to opt out. GPC has had better than 88% success in re-contacting participants.
Wednesday, June 11, 2014
12:30 PM – 1:30 PM
LG 503/4 in the Norris Research Tower (NRT)
USC Health Sciences Campus, Los Angeles, CA 90089
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