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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
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
Columbine. Virginia Tech. Ft. Hood. Huntsville. Tucson. Aurora. Newtown. The Navy Yard. Charleston. Roseburg. Gun violence, including a relentless raft of mass shootings, is epidemic today in the U.S., threatening individual safety and public health and wellbeing. The grim tally for 2015, says the Washington Post, is 294 mass shootings in 274 days. Many shooters are said to have undiagnosed or undertreated mental illness in their background.
How does psychopathology contribute to violent behavior, particularly involving firearms, over a person's life course and in the social environment? How accurate and useful are clinicians’ predictions of violence in their patients? What is an appropriate role for clinicians as “gun gatekeepers” and for mental health services generally, as part of a public-health solution to gun violence? This Medical Center Hour reviews research related to these urgent questions and explores implications for clinicians and other mental-health stakeholders.
Co-presented with the Institute for Law, Psychiatry, and Public Policy and the School of Law, UVA
A John F. Anderson Memorial Lecture
At a time of sweeping transitions in health care, medical students and young physicians are eager for guidance as to how best to apply their knowledge and skills in caring for patients. In clinical settings, and especially in primary care, who might be the best role models for young trainees to emulate? What skills and traits do the best clinicians use to create healing relationships with patients? How do clinicians become "healers" -that is, practitioners effective in making the patient-professional relationship itself have active therapeutic potential? Professor Larry Churchill and colleagues at Vanderbilt University School of Medicine have examined these matters, interviewing both clinicians and patients on the vital question of what actually makes for a therapeutic encounter, even in the context of a stressed and changing health care system.
In this Medical Center Hour, Professor Churchill will present his studies' findings as a prelude to disscussion of the implications for medical ethics and medical education and for establishing truly "patient-centered" practices.
The design of sustainable, just, and economically feasible environments for human health and well-being is one of the most urgent needs of the 21st century on a global scale. Aging populations, environmental pollution, rapid urbanization, increased poverty, rising health care costs, the need for preventive medicine, and new developments in social and medical science have created a host of design challenges and opportunities. In this Medical Center Hour, Tim Beatley and Reuben Rainey, co-directors of the UVA School of Architecture's new Center for Design and Health, explore ways designers and planners are meeting these challenges at a variety of scales, ranging from patient-centered health care facilities to healthy neighborhoods and cities.
When documentary filmmaker Kathy Leichter moved back into her childhood home after her mother's suicide, she discovered a hidden box of audiotapes. Sixteen years passed before she had the courage to delve into this trove, but there she unearthed what her mother had recorded about every aspect of her life--from the joys and challenges of her marriage to a state senator to her son's estrangement , as well as the highs and lows of living with bipolar disorder. Here one day is Ms. Leichter's emotionally candid film about a woman coping with mental illness, her family relationships, and the ripple effects of her suicide on those she loved. In this Medical center hour, Ms. Leichter offers her extraordinary award-winning film, speaks about the transformative nature of story, and shows how Here one day is helping to dissolve mental health stigma and to educate and support persons and families in communities and educational institutions across the country.
We live in times when empathy—the ability to imagine how it feels to be inside the skin of another—seems to be in short supply. As a writer of poetry and memoir, Mark Doty believes that literature is one of the most powerful tools we have to come close to the subjectivity of another person. The practice of medicine, too, is a work of knowing—of learning who someone is, what they need, and how they might be healed. In this Medical Center Hour, Mr. Doty explores these ideas through writings that grew out of the crisis years of the AIDS epidemic in this country and in recent work concerned with love, time, and citizenship in the human community.
A John F. Anderson Memorial Lecture
Co-presented with the Creative Writing Program, Department of English