Day of Absence 2016: Carolyn Prouty – Race-Based Medicine: What It Is And Why It’s a Problem

Posted in Health/Medicine/Genetics, Media Archive, United States, Videos on 2016-05-12 01:22Z by Steven

Day of Absence 2016: Carolyn Prouty – Race-Based Medicine: What It Is And Why It’s a Problem

The Evergreen State College Productions
Olympia, Washington
2016-04-06

Carolyn Prouty

There is no biological basis for race; it is a socially constructed concept. Nonetheless, the structural nature of racism in society manifests itself in different health outcomes for peoples identified as different races, both as the health effect of experiencing racism, and interactions of people of color within the American health care system. Historically, it is clear how biology and anthropology have been misused in explaining differences between groups of humans, and these patterns have helped to reveal unexamined biases of researchers. Yet current uses of genetics in medical practice and research still follow some of these same erroneous paths, for example, confusing ancestry with race, conflating socio-economic conditions with race, and substituting common (and readily recombined) superficial hereditary traits such as skin color and hair shape as proxies for more substantive genetic markers. In this session, we will outline these ideas from biology, medicine, and sociology, beginning with Dorothy Roberts’ TED talk, “The Problem with Race-Based Medicine”, and investigate their applications in current and future practice. We’ll spend time in small group and larger group discussions, as we deconstruct the biology of race, expose some structural biases of American medicine and examine the implications of race-based medicine.

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AmbryShare Restores Genes to the Public Domain

Posted in Articles, Health/Medicine/Genetics, Law, Media Archive, United States on 2016-04-01 21:24Z by Steven

AmbryShare Restores Genes to the Public Domain

The Huffington Post
2016-03-29

Amal Cheema, Biochemistry and Political Science Student
Wellesley College, Wellesley, Massachusetts

“As a stage four cancer survivor, I find it shocking that public and private laboratories routinely lock away vital genomic information. That practice is delaying medical progress, causing real human suffering, and it needs to stop.” —Ambry Genetics CEO and founder Charles Dunlop

In its purest form, science seeks to determine how the world works and endeavors to improve the human condition. Yet, the current culture of research undermines this value-system, as institutions across the nation look for ways to capitalize on discoveries. The commodification of information, particularly of the genome, hinders innovation and prevents the discovery of novel drugs and cures., researchers can either seek revenue for their underfunded research or ensure the accessibility of scientific knowledge, but they can’t do both.

It’s not clear whether academic solidarity will prevail, universities increasingly rely upon licensing revenues and keep information proprietary. Although genes can no longer be patented in the U.S. due to the 2013 Supreme Court case, Association for Molecular Pathology et al. v. Myriad Genetics, most researchers perceive little benefit in sharing raw data. They silo their work and therefore, hamper innovation. The solution to this roadblock lies in the new, remediating, and open-access genomic libraries.

Ambry Genetics (Ambry), a leading genetics company, recently revealed its bypass to closed-door labs and patented information. It created a genomic library, AmbryShare, making the DNA data of 10,000 people available online to the public. And it’s the first private company to do so. While Ambry retains copyright, researchers now can easily download the data for free and investigate the genetic determinants of disease…

…Yet AmbryShare is not without its critics. Some fear that the database will lead to false positives and privacy breaches. Bioethicists like Dorothy Roberts of UPenn Law worry about false positives, such as race-specific gene differences. Roberts asserts that society has politically constructed race without a biological basis, and that researchers could support racism by misattributing differences in the genome as evidence of race. Scientists can address this concern by removing the race question from patient profiles…

Read the entire article here.

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Taking race out of human genetics and memetics: We can’t achieve one without achieving the other

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science on 2016-03-24 01:52Z by Steven

Taking race out of human genetics and memetics: We can’t achieve one without achieving the other

OUPblog: Oxford University Press’s Academic Insights for the Thinking World
2016-03-23

Carlos Hoyt

Carlos Hoyt explores race, racial identity and related issues as a scholar, teacher, psychotherapist, parent, and racialized member of our society, interrogating master narratives and the dominant discourse on race with the goal of illuminating and virtuously disrupting the racial worldview. Carlos holds teaching positions at Wheelock College, Simmons College, and Boston University in Boston Massachusetts, and has authored peer-reviewed articles on spirituality in social work practice and the pedagogy of the definition of racism. He is the author of The Arc of a Bad Idea: Understanding and Transcending Race, published by Oxford University Press.

Acknowledging that they are certainly not the first to do so, four scientists, Michael Yudell, Dorothy Roberts, Rob Desalle, and Sarah Tishkoff recently called for the phasing out of the use of the concept/term “race” in biological science.

Because race is an irredeemably nebulous, confused, and confusing social construct, the authors advocate for replacing it with “ancestry.” “Ancestry,” they say, is a “process-based” concept that encourages one to seek information about genomic heritage, while race is a “patternbased” concept that induces one to organize individuals into preconceived hierarchical groupings based on shifting, murky, and contradictory combinations of appearance, geography, ability, worth, and the like.

If biological science seeks and relies on valid and maximally precise population level comparisons between groups, and race is an irrefutably imprecise proxy for consistent and concordant biological/genetic comparison, then of course we should stop using it in biology and switch over to “ancestry,” “genetic heritage,” or some other term that actually gets at what’s real, reliable, and useful. It doesn’t feel like a rocket-science proposition. And yet biological science hasn’t been able to heed the call and make the shift. And I sadly forecast that the shift won’t soon – or ever – be made – unless and until we take the step that even the well-meaning authors of this call for stop short of taking…

Read the entire article here.

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Dorothy Roberts: The problem with race-based medicine

Posted in Health/Medicine/Genetics, Media Archive, United States, Videos on 2016-02-13 04:42Z by Steven

Dorothy Roberts: The problem with race-based medicine

TEDMED 2015
November 2015

Dorothy Roberts, George A. Weiss University Professor of Law and Sociology and the Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights
University of Pennsylvania

Social justice advocate and law scholar Dorothy Roberts has a precise and powerful message: Race-based medicine is bad medicine. Even today, many doctors still use race as a medical shortcut; they make important decisions about things like pain tolerance based on a patient’s skin color instead of medical observation and measurement. In this searing talk, Roberts lays out the lingering traces of race-based medicine — and invites us to be a part of ending it. “It is more urgent than ever to finally abandon this backward legacy,” she says, “and to affirm our common humanity by ending the social inequalities that truly divide us.”

Watch the video presentation (00:14:41) here. Download the video presentation here.

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Is It Time To Stop Using Race In Medical Research?

Posted in Articles, Health/Medicine/Genetics, Interviews, Media Archive, Politics/Public Policy, Social Science on 2016-02-06 19:47Z by Steven

Is It Time To Stop Using Race In Medical Research?

Shots: Health News from NPR
National Public Radio
2016-02-05

Angus Chen

Genetics researchers often discover certain snips and pieces of the human genome that are important for health and development, such as the genetic mutations that cause cystic fibrosis or sickle cell anemia. And scientists noticed that genetic variants are more common in some races, which makes it seem like race is important in genetics research.

But some researchers say that we’ve taken the concept too far. To find out what that means, we’ve talked to two of the authors of an article published Thursday in the journal Science. Sarah Tishkoff is a human population geneticist and a professor at the University of Pennsylvania. Dorothy Roberts is a legal scholar, sociologist and a professor at the University of Pennsylvania’s Africana Studies department. This interview has been edited for length and clarity…

Read entire interview here.

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Taking race out of human genetics

Posted in Articles, Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science on 2016-02-06 17:35Z by Steven

Taking race out of human genetics

Science
Volume 351, Issue 6273 (2016-02-05)
pages 564-565
DOI: 10.1126/science.aac4951

Michael Yudell, Associate Professor
Dornsife School of Public Health Department of Community Health and Prevention
Drexel University, Philadelphia, Pennsylvania

Dorothy Roberts, George A. Weiss University Professor of Law and Sociology and the Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights
University of Pennsylvania

Rob DeSalle, Curator, Molecular Systematics; Principal Investigator, SICG Genomics Lab; Professor, Richard Gilder Graduate School
American Museum of Natural History, New York, New York

Sarah Tishkoff, David and Lyn Silfen University Professor in Genetics and Biology
University of Pennsylvania

In the wake of the sequencing of the human genome in the early 2000s, genome pioneers and social scientists alike called for an end to the use of race as a variable in genetic research (1, 2). Unfortunately, by some measures, the use of race as a biological category has increased in the postgenomic age (3). Although inconsistent definition and use has been a chief problem with the race concept, it has historically been used as a taxonomic categorization based on common hereditary traits (such as skin color) to elucidate the relationship between our ancestry and our genes. We believe the use of biological concepts of race in human genetic research—so disputed and so mired in confusion—is problematic at best and harmful at worst. It is time for biologists to find a better way.

Read the entire article here.

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Panel Discussion: Social Inequalities in Health

Posted in Health/Medicine/Genetics, Media Archive, Politics/Public Policy, Social Science, United States, Videos on 2015-12-23 18:05Z by Steven

Panel Discussion: Social Inequalities in Health

National Institutes of Health (U.S.). Office of Behavioral and Social Sciences Research
Bethesda, Maryland
2015-05-08, 14:00 EDT (Local Time)

The NIH Office of Behavioral and Social Science Research will host the Panel Discussion: Social Inequalities in Health, on May 8, 2015, at the NIH Campus, as part of the 2014-2015 BSSR Lecture Series to promote open and engaged discussion about cutting edge research in the behavioral and social sciences field.

Panelists:


Watch or download the video (01:56:15) here.

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Author Meets Reader: Fatal Invention: How Science, Politics and Big Business Recreate Race in the Twenty-First Century by Dorothy Roberts

Posted in Health/Medicine/Genetics, Live Events, Media Archive, Politics/Public Policy, Social Science, United States on 2015-11-03 00:55Z by Steven

Author Meets Reader: Fatal Invention: How Science, Politics and Big Business Recreate Race in the Twenty-First Century by Dorothy Roberts

University of California, Irvine
School of Law
401 E. Peltason Drive
Irvine, California
Room 3500
Monday, 2015-11-02, 18:30 PST (Local Time)

Sponsored by the Center for Biotechnology and Global Health Policy and the Center on Law, Equality and Race’s Perspectives, this special Author Meets Reader event will feature author Dorothy Roberts speaking about her book

For more information, click here.

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Penn Lightbulb Café Presents ‘Fatal Invention: Re-creating Race in Genomic Era’

Posted in Health/Medicine/Genetics, Live Events, Media Archive, Politics/Public Policy, Social Science, United States on 2015-09-14 18:23Z by Steven

Penn Lightbulb Café Presents ‘Fatal Invention: Re-creating Race in Genomic Era’

World Cafe Live Upstairs
3025 Walnut Street
Philadelphia, Pennsylvania
Tuesday, September 15, 18:00-19:00 EDT (Local Time)

Dorothy Roberts, Penn Integrates Knowledge Professor; George A. Weiss University Professor of Law and Sociology, Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights, Professor of Africana Studies, and director of the Program on Race, Science and Society
University of Pennsylvania

After the human genome was mapped, there was an unexpected resurgence of scientific interest in genetic differences between races. Some scientists are defining race as a biological category written in our genes, while the biotechnology and pharmaceutical industries convert the new race science into race-based products, such as race-specific medicines and ancestry tests. Professor Roberts argues that the genetic interpretation of race is not only mistaken but also masks the continuing impact of racism in a supposedly post-racial society. Instead, she calls for affirming common humanity by working to end social inequities supported by the political system of race.

The talk is part of the Penn Lightbulb Café free public-lecture series presented by Penn Arts & Sciences and the Office of University Communications that takes arts, humanities and social-sciences scholarship out of the classroom for a night on the town. Each hour-long talk begins at 6 p.m., and the presentation will be followed by an audience Q&A. Café events are free and open to the public. Food and beverages will be available for purchase. Seating is limited.

For more information, click here.

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IRRPP Annual Bowman Lecture: Fatal Invention: Why The Politics of Race and Science Still Matters

Posted in Health/Medicine/Genetics, Live Events, Media Archive, Politics/Public Policy, Social Science, United States on 2015-03-11 16:52Z by Steven

IRRPP Annual Bowman Lecture: Fatal Invention: Why The Politics of Race and Science Still Matters

Institute for Research on Race and Public Policy
University of Illinois, Chicago
Student Center East
750 S. Halsted St, Room 302
Chicago, Illinois
2015-03-12, 16:00 CDT (Local Time)

Dorothy Roberts, Professor of Law and Sociology
University of Pennsylvania

Co-sponsors: Medical Education, Institute for the Humanities Health and Society Working Group, Gender & Women’s Studies, Sociology, Biocultures, Racialized Body Cluster, African American Studies

An acclaimed scholar of race, gender, and the law, Professor Dorothy Roberts is the fourteenth Penn Integrates Knowledge Professor, George A. Weiss University Professor, and the inaugural Raymond Pace and Sadie Tanner Mossell Alexander Professor of Civil Rights at University of Pennsylvania. She holds appointments in the Law School and Departments of Africana Studies and Sociology. Professor Roberts received her Doctor of Jurisprudence from Harvard Law School.

This lecture was established to honor Phillip J. Bowman’s contributions to UIC during his tenure as Director of IRRPP and Professor of African American Studies. It features national scholars of race, ethnicity, and public policy who provide timely analysis of issues of critical importance to the field and to communities of color.

For more information, click here.

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