Genomics

April 25 | Online Film Screening: The State of Eugenics

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Tuesday, April 25 at 3:30 PST
What is the legacy of government sponsored eugenics programs? Learn more and join the discussion following a special screening of THE STATE OF EUGENICS on Tuesday, April 25 at 3:30pm PT presented by Facing History and Ourselves and Reel South.

Between 1933 and 1974, the state of North Carolina ran one of the most aggressive eugenics programs, sterilizing more than 7,600 men, women and children. This film follows the journey of survivors, legislators and journalists who insist the state confront its role in the tragic, forced sterilization of thousands of Americans thought to have “undesirable” genetics.

Duration: 90 minutes

More details are at http://bit.ly/tsoe2017
Promotional Video: https://vimeo.com/195666167
RSVP: http://bit.ly/tsoe2017

Further Reading:

2017 Los Angeles Times Editorial: California needs to do more than apologize to people it sterilized

2016 PBS: Unwanted Sterilization and Eugenics Programs in the United States

2014 Center for Investigative Reporting: Female prison inmates sterilized illegally, California audit confirms

2014 Press Enterprise: Female inmates, some in Chino, unlawfully sterilized

2014 California State AUDIT: Sterilization of Female Inmates Some Inmates Were Sterilized Unlawfully, and Safeguards Designed to Limit Occurrences of the Procedure Failed

2013 Center for Investigative Reporting: Female inmates sterilized in California prisons without approval

2013 Center for Investigative Reporting Video: Sterilized Behind Bars

 

May 10 | CRISPR Cas9 and Justice

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Wednesday May 10, 2017
Biomed 200, 12Noon-1:00PM

Sponsored by the CRISPR User Group, SJRC Director Jenny Reardon (Professor of Sociology) will present a talk, to divert our gaze from the spectacular—we will cut out deadly genes; we will fundamentally alter the human species—to focus on the more mundane, but more profound changes of which CRISPR technologies are apart—changes that that call into question how we live and know today.

Rather than a threat to the future of humanity or life on earth, Reardon will argue that CRISPR helps make visible these more fundamental transformations in modes of knowing and governing.

Pizza will be provided.

The ‘Public Good’ of Genomics

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4:00-6:00pm | Engineering 2 room 599

The Science and Justice Research Center will host Steve Sturdy, Professor of the Sociology of Medical Knowledge at the University of Edinburgh, in a Working Group event that explores the question of the ‘public good,’ and how it has been thought of and variously understood within the field of genomics.

Lindsey Dillon, Assistant Professor of Sociology at UC Santa Cruz and Gretchen Gano, Associate Director of Research for the Center for Science, Technology, Medicine and Society at UC Berkeley will serve as discussants.

Just Data? Justice, Knowledge and Care in an Age of Precision Medicine

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The “Just Data?” meeting at UCSC aims to broaden the public discussion about big data and health from ethical and legal questions about privacy and informed consent to more fundamental questions about the right and just constitution of care, trust, and knowledge in an age of biomedical data. This agenda-setting workshop will gather international leaders in genomics, health and informatics, civil rights, bioethics, indigenous rights, science policy and the social study of health and medicine. The meeting will be broken into two phases: 1) Discussion of critical challenges, problems and promises; 2) Collaborative work to set the science and justice agenda of big biodata and precision medicine.

For full event and registration information, please visit: https://justdataucsc.wordpress.com/

Co-Sponsored by the National Science Foundation, the NHGRI program of the NIH, the UC North Bioethics Collaboratory, and the UCSC Genomics Institute.

May 18-19 | Alumni Room, University Center, UC Santa Cruz

The Genomic Open: Then and Now

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The story of the Bermuda Principles and their codification of genome scientists’ commitment to save the human genome from private enclosure is the dominant story of the Human Genome Project. Twenty years after the first historic Bermuda meeting, this seminar will gather together at UC Santa Cruz key players in the creation of an ‘open’ approach to genomics with historians of genomics and allied fields to critically reprise this iconic story. UC Santa Cruz played an important role in ensuring that genomic data remained in the public domain. Today it continues this commitment, but the times have changed. First, genomics is no longer primarily funded by public funds, and a line between public and private efforts can no longer easily be drawn. Second, human genomics is marked by a desire to gain data from private persons who have privacy rights that do not easily articulate to an ethos of open access. Third, genomics is a global science that requires working across nations that have diverse approaches to questions of privacy and private/public ‘partnerships.’ Finally, the number of people producing genomic data and the amount of data itself has grown exponentially, creating new challenges for creating data sharing rules and norms. Participants in this workshop will return to the forging of the Bermuda Principles in 1996 both to generate new insights about the emergence of the genomic open in the 1990s, and to understand what a richer understanding of this history might offer to contemporary efforts to enact public genomics.

Admission is free, however seating is limited, please register here.

This event is sponsored in part by: The UCSC QB3 Genomics Institute

10:30-5:00pm | BioMed 200

 

Rachel Ankeny, Professor of History, The University of Adelaide, Australia

Jenny Bangham, Research Scholar, Max Planck Institute for the History of Science, Berlin

Scott Edmunds, Executive Editor of GigaScience

David Haussler, Scientific Director of the Genomics Institute, UCSC

Stephen Hilgartner, Professor of Science & Technology Studies, Cornell University

Kathryn Maxson, PhD candidate, History of Science, Princeton University

Jenny Reardon, Professor of Sociology and Director of the Science and Justice Research Center, UCSC

Beth Shapiro, Associate Professor of Ecology and Evolutionary Biology, UCSC

Hallam Stevens, Assistant Professor of History, Nanyang Technological University, Singapore

Michael Troncoso, Chief Campus Counsel, UCSC

Robert Waterston, Professor and Chair, Genome Sciences, University of Washington

 

Agenda

Welcome and Introductions

10:30 – 10:45AM   Jenny Reardon (Sociology, Science & Justice Research Center, UCSC)

 

Historical perspectives

10:45 – 11:10AM   Bob Waterston (Genome Sciences, University of Washington)

11:10 – 11:40AM   Rachel Ankeny (History, The University of Adelaide, Australia)

Kathryn Maxson (History of Science, Princeton)

11:40 – 11:55PM   Jenny Bangham (Max Planck Institute for the History of Science, Berlin)

11:55 – 12:10PM   Steve Hilgartner (Science & Technology Studies, Cornell)

12:10 – 12:45PM   Discussion

 

Genomic Open meets the Biomedical Enclosure

1:45 – 2:00PM   David Haussler (Genomics Institute, UCSC)

2:00 – 2:15PM   Jenny Reardon (Sociology, Science & Justice Research Center, UCSC)

2:15 – 2:20PM   Michael Troncoso (Chief Campus Counsel, UCSC)

2:20 – 3:00PM   Discussion

 

Where are we now?  Emerging Problems and Innovations

3:30 – 3:45PM   Scott Edmunds (Executive Editor of GigaScience)

3:45 – 4:00PM   Beth Shapiro (Ecology and Evolutionary Biology, UCSC)

4:00 – 4:15PM   Hallam Stevens (History, Nanyang Technological University, Singapore)

4:15 – 5:00PM   Discussion

Kim TallBear – Cultivating Indigenous Scientists

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Kim TallBear (University of Texas, Austin) discusses how genomics forms along with notions of race and indigeneity (the topic of her 2013 monograph, Native American DNA) and the novel roles that Native geneticists are playing in intervening in these processes to create a more just and democratic approach to genomics.

Co-Sponsored by the UCSC Genomics Institute and the Center for Biomolecular Sciences and Engineering.

To view the video documentation of this event, click this link.  Or — listen to the event below:

Good Science/People’s Science: An Exploration of Science and Justice

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C-Thompson-2As part of the Science and Justice Research Center’s efforts to develop analytics for understanding and enacting ‘science and justice,’ we hosted a half-day long symposium that features the work of Charis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies, UC Berkeley) and Ruha Benjamin (Assistant Professor in the Center for African American Studies, Princeton University).  In their respective works (Good Science: The Ethical Choreography of Stem Cell Science, University of California Press; People’s Science: Bodies and Rights on the Stem Cell Frontier, Stanford University Press), Thompson and Benjamin provided us with an excellent starting point for our collective efforts to conceptualize and enact ‘science and justice.’

This event included a morning reading group and an afternoon presentation by the two speakers, followed by discussion with a response from Julie Harris-Wai (Assistant Professor, UC San Francisco and Associate Director of CT2G).

Part 1: Introductions by Jenny Reardon & Tala Khanmalek
Part 2: Charis Thompson
Part 3: Ruha Benjamin
Part 4: Julie Harris-Wai, respondant
Part 5: Q/A session
 
Audio of Full Event:

Speakers:
Ruha Benjamin (Assistant Professor, Center for African American Studies and Faculty Associate in the History of Science Program, Princeton)
Charis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies, UC Berkeley; Professor of Sociology, London School of Economics)
Respondent: Julie Harris-Wai (Assistant Professor, UC San Francisco; Associate Director, Center for Transdisciplinary ELSI Research in Translational Genomics | CT2G)P1000020

This event was co-sponsored by UCSC Departments of Politics, History of Consciousness, Feminist Studies, WiSE, and Sociology.

The event is also sponsored by UC Berkeley’s Center for Race and Gender, Politics of Biology and Race Working Group, and Gender and Women’s Studies Department as well as UCSF’s Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G).

Organized in part by Visiting Scholar Tala Khanmalek.

 

Science Journalism: Education, Entertainment or Instigation?

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Sally Lehrman and Joe Palca

How much can you educate someone about DNA tests or climate change in three and a half minutes?  Is “education” even the goal? NPR science journalist Joe Palca discusses what he hopes to accomplish in his science segments for public radio, as well as the reporting and production effort behind them. Palca was joined in a conversation with Science and Justice Professor and fellow journalist Sally Lehrman about the role of science news in society, including the interplay of scientists and audience in its expression.

Read Rap Report > Science Journalism: Education, Entertainment or Instigation?

Joe Palca is a science correspondent for NPR. Since joining NPR in 1992, Palca has covered a range of science topics — everything from biomedical research to astronomy. He is currently focused on the eponymous series, “Joe’s Big Idea.” Stories in the series explore the minds and motivations of scientists and inventors. Palca comes to journalism from a science background, having received a Ph.D. in psychology from the University of California at Santa Cruz where he worked on human sleep physiology.

Sally Lehrman is the first Visiting Professor in the Science & Justice Training Program. She is an award-winning reporter and writer specializing in medicine and science policy with an emphasis on genetics, race and sexuality. Lehrman has written for some of the most respected names in national print and broadcast media including Scientific American, Nature, Health, Salon.com, and The DNA Files, distributed by NPR. As a senior fellow at the Markkula Center for Applied Ethics, she also directs the Executive Roundtable on Digital Journalism Ethics initiative. The roundtable brings together journalism executives and entrepreneurs to discuss the responsibilities of the news media to accuracy, inclusion, transparency and accountability in the digital public square.

A Conversation with Jim Kent on the Ebola Genome Browser

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 Jim Kent joined the Science & Justice Working Group for a conversation on how he and his team created the ebola genome browser. He will discuss not only their successes but the challenges they faced as they provide insights into the larger problems of knowledge and justice raised by the ebola crisis.

Jim Kent directs the genome browser development and quality assurance staff of the UCSC Genome Bioinformatics Group. He created the computer program that assembled the first working draft of the human genome sequence from information produced by sequencing centers worldwide and participated in the informatics associated with the finishing effort. The UCSC Genome Bioinformatics Group participates in the public consortium efforts to produce, assemble, and annotate genomes.

For more information on the bowser, see Kent’s interview by the Santa Cruz Sentinel and the UCSC Genome Browser Blog.

Engineering 2, 475 | December 03, 2014

Trust in Genomics: A challenge for scientists and ethicists alike

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Rap Report > Trust in Genomics: A Challenge for Scientists and Ethicists Alike

Access to data and the quality of data depend partially on the quality of trust between physicians, researchers and many different patients.  When trust breaks down, patients and research subjects may request that their samples be withdrawn, or they may not provide samples and data in the first place. Technological developments that enable biomedical institutions to bank vast quantities of tissues and data today introduce new challenges to this critical project of creating and maintaining trust.  Any tissue now given for research or routine medical care technically could be used for an indefinite amount of time for entirely unforeseen purposes. In such a situation, it is hard to say that anyone understands what they are consenting to, even the researchers and physicians collecting samples and running trials.  Under these conditions, trust based in mutual understanding faces new challenges.

How to address these novel challenges will be at the center of the Science & Justice Working Group meeting on April 16, 2014, “Trust in Genomics: A Problem of Knowledge and Ethics”, 4:00-6:00PM in Engineering 2 599 on the UCSC campus. In this discussion, respected medical geneticist Wylie Burke (University Washington) and cultural anthropologist and bioethicist Barbara Koenig (UCSF) will share their experiences working with biobanks, researchers and patients to build better data sets by attending to matters of trust and respect.

Dr. Barbara Koenig, professor of medical anthropology and bioethics in the UCSF School of Nursing, is the co-Director of a newly launched research institute at UCSF dedicated to understanding the ethical, legal and social implications of translational medical genomics, The Center for Transdisciplinary ELSI Research in Translational Genomics (CT2G). By bringing together a broad, multidisciplinary range of expertise, CT2G is endeavoring to ask, and answer, questions about how genomic information will be used in a manner that benefits researchers, patients and broader publics. “A decade after the human genome was fully mapped,” Koenig argues, “figuring out how to translate genomic findings into prevention and clinical care has become a public health priority.”

Dr. Wylie Burke, Professor of Bioethics and Humanities at the University of Washington and Principal Investigator of the University of Washington Center for Genomics and Healthcare Equality, co-authored an article in Science (Trinidad et al., 2011) that highlighted the potential benefits of approaching consent (and re-consent) as an opportunity to engage with donors beyond legal formalities. She and her co-authors examine the downstream consequences of not thoroughly consenting donors for the use of their biological materials and data. Drawing on cases that have appeared in the headlines, such as the sequencing of the HeLa cell line, they examine the wide range of opinions about how best to protect patient privacy and dignity in an age when even experts cannot anticipate how biological samples might be used in the near future. In the article, they propose that “researchers and IRBs consider how the informed consent process could be used to foster respectful engagement, rather than merely mitigate risk.”

This discussion is the second in a series of discussions that the SJRC is hosting on Data Justice (see Science and Justice in an Age of Big Data: A Conversation with Peter Yu and David Haussler for a description of the first meeting held on January 22, 2014).  The meeting is co-sponsored by the Department of Molecular, Cellular, and Developmental Biology, the Center for Biomolecular Sciences and Engineering, and the GENECATS and CANCERCATS research groups.

April 16, 2014 | Engineering 2 Room 599