Developing: Debate on ‘Race’ and Genomics

Last month, Harvard geneticist David Reich published a New York Times op-ed, entitled “How Genetics is Changing Our Understanding of ‘Race.’” In the piece, Reich argues that geneticists “are learning that while race may be a social construct, differences in genetic ancestry that happen to correlate to many of today’s racial constructs are real.”

The article prompted 67 natural and social scientists, legal scholars and public health researchers to draft an open letter in response to Reich’s claims. The letter, published by Buzzfeed, asserts that Reich misrepresents critiques of of the use of ‘race’ and ‘population’ in biomedical and genetic research.  It urges collaboration between geneticists and their social science and humanities colleagues so that more careful thinking and writing can be brought to bear upon consequential and controversial questions about how human differences should be ordered and understood.

In the weeks since, this debate has carried on. As it develops, this page will serve as repository for related stories, and will be regularly updated with new information and new links.

We will pay particular attention to how this debate is playing out differently in different countries.  Professor of Sociology and Science and Justice Director Jenny Reardon, who helped draft the Buzzfeed response, and who just finished a second book on the condition of living with genomes, has participated in this continuing discussion from Germany.  There she is collaborating with historians and population geneticists who are responding to efforts to re-introduce into Germany genetic definitions of human groups.  Since WWII, it has been taboo in the German context to use the term Rasse (the German word for ‘race’) to refer to humans.  However, many major German language media outlets are mobilizing the Reich op ed to argue that this taboo should end.  To give the reader some context for this current debate, in addition to the news coverage, we provide links to relevant academic articles.  We also provide links to coverage in other parts of the world.

 

Resources (updated regularly):

Op-Ed and Initial Response:

Reich’s Op-Ed:

 

Buzzfeed response co-authored by natural and social scientists, legal scholars, and public health researchers:

 

Responses in the Popular Press:

United States:

Germany:

Switzerland:

Austria:

United Kingdom:

  • The Unwelcome Revival of ‘Race Science’The Guardian, March 2, 2018
    • Writing several weeks prior to Reich’s op-ed, Gavin Evans describes race science as “debunked” and notes how race science is taken up by the alt-right and defended as “standing up for uncomfortable truths.”
  • How ancient DNA is transforming our view of the pastBBC News, April 12, 2018
    • A BBC reporter asks Reich about Buzzfeed response.  Rather than responding to substance to the critique, Reich says he is “very pleased to be part of introducing this discussion.”

France:

Korea:

  • Race, Genetics and Us – Korea Times, March 30
    • Jason Lim questions Reich’s optimism about the ability of society to not ‘weaponize’ findings about race and genomics.

Canada:

  • Opinion: Is ‘Race” a Made-Up Label?The Globe and Mail, April 14, 2018
    • Margaret Wente defends Reich for “expanding the range of what is sayable on a topic that is explosive, uncomfortable, and also increasingly inescapable.”
  • Why Your DNA Test Won’t Reveal the Real You – The Globe and Mail, May 4, 2018
    • Timothy Caulfield argues that race is a “biological fiction” and that attempts to attach genetics to human classification, as exemplified by genetic ancestry testing, tend to reify and legitimate racist perspectives.

India:

  • The Science is ComingIndia Times Magazine, April 5, 2018
    • Razib Khan compares Reich’s op-ed to “tossing a grenade into the public square,” but defends his work and his book as not controversial, but “wondrous.”

 

Race and Genomics Debates in the U.S. and Germany:

May 10 | CRISPR Cas9 and Justice

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.

 

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

April 25 | Online Film Screening: The State of Eugenics

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

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

 

Nov 16 | The ‘Public Good’ of Genomics

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.

November 16, 2016 | 4:00-6:00pm | Engineering 2 room 599

May 18 | Just Data? Justice, Knowledge and Care in an Age of Precision Medicine

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

Nov 18 | The Genomic Open: Then and Now

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

May 20 | Kim TallBear – Cultivating Indigenous Scientists

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:

May 06 | Good Science/People’s Science: An Exploration of Science and Justice

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.

 

March 04 | Science Journalism: Education, Entertainment or Instigation?

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.

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.

Science Journalism: Education, Entertainment or Instigation?
SJWG Rapporteur Report
4 March 2015
Rapporteur Report by Samuael Topiary
Joe Palca began his presentation by talking about his career trajectory in science reporting
which began with science reporting for TV in the NBC news Washington DC bureau where
he became a health & science producer. At that time, in the mid 1980s, his job was focused
on presenting science to the public in ways that would allow for an understanding the issues
in public policy debates. Palca told us that he couldn't stand the TV news approach where
every story had to have a medical Dr. and a patient and there was no time to find out if Dr.
knew what they were talking about. He was responsible for putting a story on the air every
night and this quick pace didn’t allow for other opinions about the story. Frustrated by the
limits of TV news science reporting, Palca moved to writing for Nature, the complete
opposite scenario, where the editor wouldn’t settle for anything short of a well-researched
story. In his move from one end of journalistic spectrum to the other, he learned that experts
aren't always as expert as they claim to be.

Moving from Nature to Science, Palca moved into medical-science writing and was the first
person to report on the Human Genome project. While at Science, he was supposed to be
tracking the money and policy-making activities, and not so much on the actual science,
which he considers to have been a dark period in science journalism. In 1992, he was
offered a one year job at NPR, which also necessitated a pay cut. Twenty-three years later,
he is still working at NPR, reporting on medicine, public policy, astronomy. He considers
NPR somewhere between local TV news and the type of reporting he did for Science and
Nature. The NPR audience is presumed to be a general interest audience, and his job is to
try and get them engaged and interested in science stories. At NPR, science reporting
integrated into general interest news, and will generally report stories that are similar to what
is being reported in the NY Times.

In explaining how science news stories are reported on, Palca explained the practice of story
“embargos” where the major science journals will publicize their table of contents in
advance to science reporters, in order to give them a jump on what stories will be published
in the upcoming article, allowing them to do their own research and due diligence on the
story. The embargo prevents reporters from publishing on the story until the date the article
in the journal is published. However, in this way, the news can publish simultaneous
articles about the breaking discoveries being published in the important science journals.
Palca explains that the “embargo” is what makes science writers look so clever, since all
journals have PR departments and send out embargo copy of next issue's table of contents,
and gives science journalists the chance to understand the topic and report on it, as well as to
predict what the big science stories will be.

Lehrman asked Palca about how his thinking about science reporting has changed over the
years. Palca responded that it has not really changed that much. He suggested that science
reporters can do a ton of education but no editor is going to ask for education; they are
interested in news and that you have to make reporting sound like news. He then added that,
in his opinion, science doesn't have a lot of answers. He was contemptuous about the idea
of relying on technological fixes to solve problems, such as geo-engineering to solve our
climate problems. He suggested that science reporting can answer the question of why tax
money should continue to be used to fund science inquiry: because it makes our culture
more interesting and gives us the ability to ask big questions. He suggested that if the
public understood science better, they might not be so interested in 'news stories' which
attempts to paint a picture of science “solving” something rather than a more true account of
scientific inquiry as being about inquiry and process. Lehrman asked how he approaches
attempting to disabuse the public of the notion that science knows everything in a 3.5 minute
piece? Palca responded by suggesting that, if taken as a whole, his body of work is
attempting to give people a notion of what science is all about.

As an illustration of this approach, Lehrman played Palca’s NPR story "Why Ants Handle
Traffic Better Than You Do" from January 19, 2015. 

Palca explained that the scientist who was studying the ant
behavior was probably wrong in his conclusion that ants don't jam up, suggesting that other
scientists he consulted thought the physics was wrong. Because there were so many
questions in his mind about the scientist’s conclusions, Palca believed that his findings were
not relevant as a news story, however, he felt that the story gave an idea that traffic
engineers can look at behavior in another discipline and he thought the story was cute and he
got jazzed about doing the traffic report (which begins this entertaining radio piece). Palca
stressed the importance of making the stories entertaining and finding ways to make the
ideas come alive with humor. He feels it is important to explain but not explain it too much,
adding that the web version of the story includes a hyperlink to more information.

Lehrman explained that in her own stories she writes critically about genetics and asks Palca
why he went with the ant story when he knew there might be problems with the underlying
science. Palca answered that he’s not making it out to be too important. With this story and
his series of stories, he’s aiming at less important science so as to not mislead anyone. He’s
showing the process of doing science, rather than the conclusion or outcome. In this way,
he’s attempting to point out what is interesting, and not worrying about what is “important.”
Explaining that he has to be respectful of people's time, as the forum for his stories is
Morning Edition, he tries to keep his pieces short and entertaining.

The second radio piece they played was a profile about a genetics researcher at UC Berkeley
who is forecasted to win the Nobel Prize.

Palca explained that in longer form journalism, you would storyboard before
you go out and do the reporting, which is how TV documentarians do it. He never does that;
he just wants to talk to them about what they're doing and why; explaining that most of the
time, he has no idea of the structure of the story. He listens through his recording for tape,
which he finds moving or compelling. Lehrman asked how he knows how complicated to
get into the details of the science. Palca explained that he has to decide what people need to
know to follow the story without making it so complicated that it would be hard to follow.
He added that he’s not trying to prove the story is worth covering; he wants his audience to
take it on faith that it's interesting.

Palca explained that his focus is on exploring the minds and motivations of inventors.
Lehrman countered that she wonders if he let the scientist in his story off the hook by not
questioning her about whether editing the genome is the most effective approach, and
whether it is the best way to allocate resources? Palca responded that we would have to
throw out 9/10ths of medical research if we thought solely about economics. Rather, he
wants to tackle stories of inventions before they get to the point of implementation. Here
he’s looking at the mind and process of inquiry. Palca added that is critical of some health
reporting because he thinks the health care system is a mess. In the past, he wrote articles
for Science about the limitations of cancer research, but that was for a scientific audience.
In terms of the Human Genome Project, “this whole business about genomes and
personalized medicine, give me a break! There are so few cases when it's helpful.” He also
added that it would be a conflict of interest to report on many of these stories now, since his
wife is the deputy director of the NIH. Lehrman asked if this means that don’t hear stories
on NPR about the NIH? Palca responded that he tries to get his colleagues to do them,
assuring her that NPR has more than one science reporter.

Andrew Mathews asked about ways that Palca is about to bring the domains of politics and
science together. Palca answered that he doesn’t think the scientific community has done a
good job at analyzing it's process. He added that he is skeptical that peer review leads to the
best research being funded. Raising the question of how does a journalist know which
stories are good or important leads to follow? Lehrman suggested that she thinks Palca is
underselling his news sense -- some journalists just follows the PRs, whereas Palca is
discerning what is the most important work and how can he highlight that. Palca counters
that he can be wrong, just as everyone is wrong and that no one knows what the important
story will be and that he doesn’t think journalists or scientists know until you have
retrospect. He added that both Science and Nature are more wrong than any other journals
because they are riskier. He states that this is the process of questioning - I'm done saying
you should listen to this because it's the most important thing happening - I don't know what
is the most important thing

Donna Haraway (Distinguished Professor Emerita of History of Consciousness, UCSC)
stated that she thought his Crisper story perpetuated a whole series of metaphors about
biology and genetics, simplifying the science and thereby reinforcing some of the most
destructive myths about genes by allowing the listener to believe that being able to edit
single gene diseases is going to be a fundamental breakthrough, rather than understanding
the reality of multi-gene interactions. She suggested that the story reinforces a public view
of science, which is destructive. Palca responded that “I give in more often than I like to.”
Haraway asked “what little tweaks could you have done that could have avoided that
problem?” Palca responded that he didn’t think they could build in that nuance. Haraway
suggested there was room to play with the metaphors and Palca stated that his difficulty was
getting across what how the scientist’s work would be useful and to get an audience with
limited attention and understanding to engage. He also added that he understands how he
perpetuates myths. Lehrman asked if he thought there was a feeling in science journalism
that the only thing people care about is cures to diseases. Palca said that his editor is the one
who talked with about what to include. He also suggested that the head of NIH goes to
Congress to say we're going to cure disease, not that the science which is being funded is
“good for learning.” Palca stated that he steers away from stories that seem to have cures
embedded in them, but still, it is received wisdom that the reason we're doing the work if for
medical cures and not knowledge in general.

Dec 03 | A Conversation with Jim Kent on the Ebola Genome Browser

 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