Freeing patients' BRCA data

2013-11-06

University of Virginia. School of Medicine

On 13 June 2013, the U.S. Supreme Court struck down patents on the hereditary breast and ovarian cancer (BRCA) genes. One company, Utah-based Myriad Genetics, claimed ownership of those genes and both marketed and processed the test for them. Myriad now controls the genetic data of all the persons tested for BRCA.

In the wake of the 9-0 ruling against Myriad, there's considerable debate about who owns this genetic information and who should control it. Should it be held by a private company or in a commons? Should control rest with the BRCA+ community? "Free the Data," a new grass-roots campaign, brings voices of BRCA+ individuals and biomedical investigators alike into this debate. In this Medical Center Hour, documentary filmmaker Joanna Rudnick, together with law and medical experts from UVA, discuss what's at stake in freeing the data.

Co-presented with the Institute for Practical Ethics and Public Life, the Department of Public Health Sciences, and the Cancer Center's Breast Care Program, UVA

The Hollingsworth Lecture in Practical Ethics

Rudnick, Joanna (Speaker); Riley, Margaret Foster (Speaker); Modesitt, Susan C. (Speaker); Childress, Marcia Day (Moderator); University of Virginia. School of Medicine

Claude Moore Health Sciences Library

Filmed lectures

Information Dissemination -- ethics; Genes, BRCA1 -- ethics; Genes, BRCA2 -- ethics

Medical Center Hour

Claude Moore Health Sciences Library

English

The speakers in this presentation have given the University of Virginia permission to make it freely accessible online for all audiences to view. To request permission to reproduce, republish, and/or repost this presentation please contact the Historical Collections and Services Department of the Claude Moore Health Sciences Library at the University of Virginia.

1 online resource (1 video file, 63:14 min.) : sound, color

Local Identifier: u6222583