May 16 | Assembling Precision Medicine

Wednesday, May 16, 2018
1:30-3:30pm
Engineering 2, Room 599

 

Join S&J Visiting Scholars Declan Kuch and Matthew Kearnes in an informal discussion on how proponents of the bio-nano sciences, centered around polymer chemistry, have promised a new generation of targeting agents that will carry drug payloads to diseased cells with greater accuracy. Alongside these promises, proponents of precision medicine have sought to build new knowledge about health and illness through massive new databases that combine multiple ‘-omics’ with lifestyle and chemical exposure data. Much has already been written speculating about both the efficacy and social effects ‘downstream’ of these sciences, especially the likely consequences of precision medicine in domains of socio-economics, race and disability (Juengst et al., 2016; Meagher et al., 2016).We instead seek to discuss how these critiques are (or are not) affecting laboratory designs, practices, and methods, starting with a discussion of critiques of bio-nano science (Torrice, 2016; Wilhelm et al., 2016). How can bio-nano science and precision medicine practically address their critics in such disciplines as public health and sociology dismissing them as expensive indulgences to benefit mostly rich white people? What role can data sharing play in building public support? How can the open science ethos of bio-nano and much precision medicine research translate into public benefit considering the expanding ‘pharmaceuticalisation’ of illness (Dumit, 2012) and rising drug prices?

Declan Kuch is a Research Fellow in the School of Humanities and Languagues at UNSW. His research is situated between the fields of Science and Technology Studies and Economic Sociology. He has published on topics including public engagement with science and technology, precision medicine, energy and climate policy, and the sharing economy. He is the author of ‘The Rise and Fall of Carbon Emissions Trading’ (Palgrave MacMillan, 2015) and loves riding bikes.

Matthew Kearnes is an Australian Research Council Future Fellow, a CI with the ARC Centre of Excellence in Convergent Bio-Nano Science & Technology (CBNS) and member of the of Environmental Humanities Group at the School of Humanities and Languages, University of New South Wales. Matthew’s research is situated between the fields of Science and Technology Studies (STS), human geography and contemporary social theory. His current work is focused on the social and political dimensions of technological and environmental change, including ongoing work on nanotechnology, precision medicine, geoengineering and the development of negative emission strategies to anthropogenic climatic change. He has published widely on the ways in which the development of novel and emerging technologies is entangled with profound social, ethical and normative questions. Matthew serves on the editorial board Science, Technology and Society (Sage) and is an associate editor for Science as Culture (Taylor & Francis). Matthew is also co-convenor of the 4S 2018 conference, to be held in Sydney in August 2018.

References

  • Dumit J. (2012) Drugs for life: how pharmaceutical companies define our health, Durham, NC: Duke University Press.
  • Juengst E, McGowan ML, Fishman JR, et al. (2016) From “personalized” to “precision” medicine: the ethical and social implications of rhetorical reform in genomic medicine. Hastings Center Report 46: 21-33.
  • Meagher KM, McGowan ML, Settersten RA, et al. (2016) Precisely Where Are We Going? Charting the New Terrain of Precision Prevention. Annual Review of Genomics and Human Genetics.
  • Torrice M. (2016) Does Nanomedicine Have a Delivery Problem? ACS Central Science 2: 434-437.
  • Wilhelm S, Tavares AJ, Dai Q, et al. (2016) Analysis of nanoparticle delivery to tumours. Nature Reviews Materials 1: 16014.

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

Genomics Gets Personal: Property, Persons, Privacy

Introduction by David Haussler, Director of the UCSC Center for Biomolecular Science & Engineering and the UCSC Cancer Genomics Hub). 

Panelists:

Gail P. Jarvik, M.D., Ph.D., Head, Division of Medical Genetics, The Arno G. Motulsky Endowed Chair in Medicine & Professor of Genome Sciences, University of Washington Medical Center

Robert Cook-Deegan, M.D., Research Professor, Genome Ethics, Law & Policy, Duke University, Director, Center for Genome Ethics, Law and Policy, Duke Institute for Genome Sciences & Policy, Author of Gene Wars: Science, Politics and the Human Genome Project

John Wilbanks, Director, Sage Bionetworks, Director, Consent to Research project (CtR), Co-founder of the Access2Research petition
Senior Fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation

Ryan Phelan, Founder, and former CEO, DNA Direct by Medco
Board member, Personal Genome Project, Founder Direct Medical Knowledge, Founding Executive Director of Planetree

Roundtable discussion moderated by Jenny Reardon, Director of the Science & Justice Research Center and Professor of Sociology at UC Santa Cruz.

Tremendous advances in sequencing technologies have transformed genomes into a valuable new source of data about the biology of individuals. While these new data promise a revolution in medical care, more immediately they pose fundamental new ethical, social and legal questions about ownership and control of our bodies and their molecular constituents.

• To what extent are genomes the property of persons, and thus subject to their control?

• To what extent should genomes be shared in pursuit of medical breakthroughs or profit by others?

Please join a panel of experts to explore these questions and offer insights on how we can advance personal genomics within ethical and legal frameworks that respond to these fundamental questions about individual rights, property, and the nature of public goods in a genomic age.

A  special event featuring a panel discussion on the ethical and legal questions around personal genomics, hosted at UCSF Mission Bay Campus
Byers Auditorium at Genentech Hall, 600 16th Street, San Francisco.

"Genomics Gets Personal: Property, Persons, Privacy"
SJWG Rapporteur Report
27 September 2012
Reporter: Martha Kenney
“Genomics Gets Personal: Property, Persons, Privacy” took place at UCSF’s Mission Bay
Campus on September 27th, 2012. Renowned Bioinformatics researcher David Haussler, in his
introduction to the event, explained that in the next phase of genomics research that the hardest
challenges will not be the technological or medical problems but the social issues. He suggested
that interdisciplinary initiatives like the Science & Justice Research Center are necessary to
investigate and address these social issues. Jenny Reardon, the chair of the proceedings,
introduced the topic of personal data by reminding the audience that not long ago there was no
such thing as “personal data.” We did not grow up with the idea of personal data, but in the age
of Facebook our lives are not only mediated by data but our bodies have become new, potentially
valuable, sources of data. The Science & Justice Research Center has been experimenting with
bringing novel groups of interdisciplinary researchers together to address these novel problems.
This event convened a panel of four world-class medical and legal experts from the public and
private sectors around two questions unique to problems that emerge from the rise of “personal
data”:

• To what extent are genomes the property of persons and subject to their control?
• To what extent should genomes be shared with others for the purpose of medical
breakthroughs or profit?

Prof. Reardon posed a question to each of the panelists that drew on their unique perspectives on
personal genomics. Through the course of the discussion it became clear that the speakers had
differing opinions on key issues that were based in their personal experience with genomics and
how they were positioned in the field. For example, on the topic of citizens having access to
their own genome sequences for diagnostic purposed, there were critical difference between the
different responses.

Gail Jarvik spoke about her practice of finding actionable genes for clinical intervention through
targeted exome sequencing rather than genome sequencing. This approaches is less expensive
and doesn’t return results for genetic conditions that clinicians are not testing for. The data is not
returned to the patient or their doctor because of the risk of misinterpretation. John Wilbanks,
Director of Sage Bionetworks, however, argued that patients have a right to their data and that
taking the data out of the hands of academics needs to become a more viable alternative.
Consumer health advocated Ryan Phlean said that that the opinion that genetic data is too
dangerous and confusing for public consumption is flawed. When there are good ways to
interpret genomic data accessible online genomic data will be useful to the public. Robert Cook-
Deegan, Professor of Genome Law, Health and Policy at Duke University, agreed that people are
becoming less tolerate to the older model where the doctor acts as an intermediary between
medical tests and the patients, but unmediated access to data for patients is only one of the
competing models doctors have to choose between as genomic sequencing becomes more
prevalent.

Questions of informed consent and patients as research partners also played a prominent role in
the discussions. Robert Cook-Deegan referenced the article, “Glad you asked: Participants'
Opinions of Re-Consent for dbGaP Data Submission” as evidence that patients prefer to be asked
when their data is used for a purpose different than the original study, but once asked they are
positively inclined to share their data. Gail Jarvik, who was one of the co-authors on that article,
cautioned that the patient sample was very homogenous, containing mostly white middle-class
Americans. The question of homogeneity is an important one for both scientific and ethical
questions. John Wilbanks joked that scientists he worked with thought they would “find the
Apple gene” because their sample population was all affluent, white men who are the first to buy
the next iPhone. While Ryan Phlean suggested that this is the demographic of “early adopters”
and will change as the technologies become more ubiquitous, Robert Cook-Deegan cautioned
that we should revisit the connection between genetics and eugenics in this context. Different
groups are and will be experiencing the risks and benefits of these technologies in different ways.
This point was echoed during the open question period by Kate Darling, a graduate student in
Medical Sociology at UCSF, who noted that people are drawn into medical contexts in highly
varied, uneven, and contradictory ways. A prison inmate experiences genomics differently that
someone who pays 23andMe for genomic sequencing. Paying attention to this uneven landscape
of medicalization is key for doing bioethics in an age of personal genomics.

It was clear from the questions and varied responses that the territory of personal genomics is
still very much in formation. Questions of sharing and privacy, consent and re-consent, diversity
and inequality, paternalism vs. partnership vs. personal knowledge, and who should profit from
genomic data are currently at stake and could be addressed in multiple different ways. Forums
such as this event are an important part of building a future for personal genomics that takes into
account the social issues that arise with the new genomic technologies and is informed by
different situated (sometimes contrasting) perspectives.

Troy Duster: “Criminal Justice/Genomic Justice?”

The Science and Justice Working Group Presents

A Conversation With: Troy Duster, Professor of Sociology & Director of Institute for the History of the Production of Knowledge, New York University and author of Backdoor to Eugenics (Routledge, 2003)

This month, the U.K. government proposed entering into DNA databases those youths deemed “at risk” for being criminals. How can and/or should “we” respond to such proposals? DNA databases have been celebrated for exonerating those unjustly charged with crimes, and for increasing the effectiveness of the criminal justice system, but at what cost? Are DNA databases creating new classes of persons (i.e., proto-criminals)? What are the justice issues raised by these forensic databases, and how do they relate to questions about prisons and justice? Such databases intersect with and alter issues of race, class and gender, issues that already strongly shape the criminal “justice system”; it is not yet clear what we need to know in order to address these topics in science, justice, and law.

Preceding this event, Prof. Duster will present a Sociology Dept. Colloquia: “DNA Fingerprinting and Civil Liberties: The CSI Effect and the Social and Political Implications of the Ever-Expanding DNA Databases" 3:00-4:30 p.m., Interdisciplinary Sciences Building 120

Sponsored by the Science and Justice Working Group and the Sociology Department

Troy Duster, “Criminal Justice/Genomic Justice?”
SJWG Rapporteur Report
23 April 2008
This event began with Reardon recapping Duster’s previous talk about the “CSI effect” and
DNA databanks. She mentioned that there was lots of attention on DNA data when she lived in
the UK last winter. The front page of the “Observer” recently had a headline, “ ‘Put Young
Children in DNA Database,’ Police Urge.” She asked, “How do we respond to this?” In the UK,
there is now biometric scanning/storing of biological information for migration and immigration
policies … In Troy’s earlier talk, he discussed the bias of the data base being 2/3 people of color,
so Jenny raises the question, “Can we put everyone in the database?”

Duster responded that it doesn’t change the operation of race. He noted that there would be a
false sense of universal justice. That is, having everybody is in the database assumes that since
we are all in, we are all equally subject to whatever it means to be in the database. Troy
discussed a case in the late 1980s that took place at University of Virginia. There were about a
dozen white fraternity boys, mostly from privileged backgrounds, who were raided by the police
for what turned out to be a cocaine raid. The community could not believe the police would
target college-attending white boys while real “criminals” are out on the street. Duster contends
that the apparatus of state will always turn primarily to vulnerable populations, which
consequently turn out to be predominantly black and Latino arrests. He stated that if there were
a universal database, such as in Portugal since 2004, there would continue to be arrests in
targeted areas. “Cold hits” are arrested on the streets and not on privileged college campuses.
The important thing to think about is what is the context and specifics of question. That is as
long as we have the apparatus of the state, it’s fool’s gold to have universal database.

Donna Haraway turned discussion toward the question of positive harm. She agreed that racial,
class distributions are fundamental issues, especially in regards to incarceration populations.
However, Donna questions whether the current database harms and whether the universal
database would do positive harm or will it be a money issue? Would it be a waste of distribution?
Haraway questions whether bias is structured in system and whether DNA bias is irrelevant to
system or is it doing harm? Duster responded that there are both exonerations and releasing of
innocent people—it’s always about individual cases.

Discussion turned towards privacy issues and whether it would be possible to protect 4th
Amendment rights through technical solutions. For instance, it may be possible to divide
individuals’ genetic sequences in order segment control of the sequences and allow for
exonerative use without disclosing the entirety of one’s sequence at any one time. Duster
responded that having technical solutions can be misleading and assumes an amount of expertise
and standardization that is typically not available on a large scale in law enforcement. Presently,
local, state, and national law enforcement agencies have widely divergent standards for taking,
storing, and using genetic data on suspects and convicts.

In response to this, discussion moved toward how to change policing practices. Duster responds
to this by suggesting that we change the reward structure within policing and challenge the
funding priorities that favor prisons over schooling. For instance, there are overtime policies in
police departments that encourage extra arrests and the end of shifts, incentivizing officers to
make excess arrests. Similarly, the state often chooses funding law enforcement and prisons over
universities because prisons create jobs for economically depressed communities and these jobs
cannot be outsourced.

Several participants raised questions about how much biometric and genetic infrastructure feeds
into police state and how much of it can actually be used positively to release innocent prisoners.
Duster responds that DNA at best is going to handle 1-2% of all crimes. Out prisons have 2
million people. Maybe 3000 exonerates for 300,000 who are not getting it. Beatriz da Costa
mentioned her experience of being an immigrant to the US and skepticism of being subject to
laser scanning and questioned something along the lines of where that information is going or
how might it be used against her. Duster responded that it seems to depend almost entirely on
who is in control of database. The answer is going to come in context of who is asking the
question and who has got the power.

SJWG member Jake Metcalf raised the question of whether we are giving DNA too much power
and notes there are all sorts of ways of reading the genome and more subtle ways of
understanding DNA. Some the concerns over genetic databases seems to rest on sketchy science
and an incomplete understanding of exactly what types of information get stored and how they
are used. As important as it is to resist the police state, it is important to avoid reifying an overly
powerful understating of DNA because then it is reinforced, when really it should be challenged
empirically and politically. Chelsea argued that the power of DNA in criminal justice will
largely be settled by legal precedent.

Mark Diekhans made the point that there is a privilege to identifying as/with the socio-economic
class that isn’t scared of being targeted as “criminal.” Duster mentioned that there is this pushing
together of “criminals” that started off as just sexual offenders, to then violent, then, felons, then
misdemeanor, to now arrestees – there’s a long continuum that we need to be aware of. Duster
highlights importance of possible, practical solutions. The ACLU says “arrestees, no; felons,
OK…” but at level of arrestees there is potential for mobilizing.

Rebecca [politics student?] then brought up the epistemological assumption of the body. That is,
without too much science how can the body tell the truth? From a political and ethical
standpoint, is the idea of the body property? What are underlying assumptions about the body?
Reardon added, who owns the self? Whose property is it? We’ve moved from ownership of land
to the self…is it white guilt? Who owns a body? Can anybody have property of the self?
Beatrice notes that classification is issue too. We don’t have to have a good science—looking at
donor profiles online; there are spaces for “homosexual tendencies” are being pathologized.

A question was raised whether there is fear of the “criminal gene”? Is there fear that we might
use new or find new categorization by developing a universal database. Duster responded that
crime is socially defined—even murder and rape. Historically, rape could not have happened to
black women by white men or slave owners. Haraway suggested that the politics of DNA storage
need to consider the politics of where samples are taken from? There is an issue of the quality of
science here and assurance regulating and limitations of a set of samples/data. We are not
looking at DNA but more a repeat of sequences. The politics of sampling raises the question of
“who is compared to what?” Donna reminds us that DNA is not one god but is a variety of
practices—the dog genome is useful to investigate—and thus we should not let DNA stand as a
single word.