Start Over

151. Freeing patients' BRCA data (1:03:14)

Date:
2013-11-06
Main contributors:
University of Virginia. School of Medicine
Summary:
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

153. Galileo’s middle finger: heretics, activists, and the search for justice in science (1:02:57)

Date:
2016-03-23
Main contributors:
University of Virginia. School of Medicine
Summary:
Alice Dreger’s newest book, Galileo’s Middle Finger: Heretics, Activists, and the Search for Justice in Science, had its origins in social and scientific controversies having to do with the politics of sex, especially social and medical treatment of so-called intersex individuals. Ms. Dreger’s investigations into this aspect of human identity and intersex rights engaged her with both sides of a heated debate and also with issues of freedom and justice in science. As she says, “Science and social justice require each other to be healthy, and both are critically important to human freedom. . . . [P]ursuit of evidence is probably the most pressing moral imperative of our time. All of our work as scholars, activities, and citizens of democracy depends on it. Yet it seems that, especially when questions of human identity are concerned, we’ve built up a system in which scientists and social justice advocates are fighting in ways that poison the soil on which both depend. It’s high time we think about this mess we’ve created, about what we’re doing to each other and to democracy itself.” In this Medical Center Hour, Ms. Dreger addresses these concerns—for science, justice, and academic freedom—at a time when pursuit of knowledge can clash with established interests, worldviews, and ideas about social progress. Co-presented with the History of the Health Sciences Lecture Series