February 23, 2022 | Global divisions of health: bioethical principles, practices and regulations on human genome editing in Latin America

Wednesday, February 23, 2022

4:00-5:30 PM

Zoom Registration

Join SJRC scholars for an open discussion of works-in-progress! This is a wonderful chance to engage with one another’s ideas, and support our own internal work.

At this session, we will hear from one of our visiting scholars, Abril Saldaña-Tejeda in a talk titled, “Global divisions of health; bioethical principles, practices and regulations on human genome editing in Latin America.”

This project asks how scientific and non-scientific communities of knowledge production in Latin America have historically perceived ethical concerns regarding human genome editing and other reproductive technologies (MSRTs). The project explores how current frameworks, concerns and discourses in the United States and Europe engage with (or contradict) those in Latin America. Through a series of seminars, workshops and regional meetings /in-depth interviews with some key stakeholders (geneticists, legislators, academics), the project explores the implications of a geographical and discursive distance between those places where bioethical frameworks are produced (global north) and those where the actual practice of human genome editing (research and trials) could be potentially happening.

Abril Saldaña-Tejeda is Associate Professor of Sociology at the Department of Philosophy, Universidad de Guanajuato, Mexico, and focuses on the social determinants of health, genomics and postgenomics. She is currently exploring bioethical principles, practices and regulations on human genome editing and stem cell research in Latin America.

January 19, 2022 | Works-in-Progress with Daphne Martschenko and Sam Trejo

Wednesday, January 19, 2022

4:00 PM – 5:30 PM

Zoom Registration

Join SJRC scholars for an open discussion of works-in-progress! This is a wonderful chance to engage with one another’s ideas, and support our own internal work.

At this session, we will hear from Daphne Martschenko, a Research Fellow at the Stanford Center for Biomedical Ethics and collaborator Sam Trejo, an Assistant Professor in the Department Sociology and a faculty affiliate of the Office of Population Research at Princeton University, on how ethical, anticipatory genomics research on human behavior means celebrating disagreement.

Despite the many social and ethical considerations in human genetics, researchers and communities remain largely siloed as for-profit direct-to-consumer genetic testing and the application of polygenic scores to in vitro fertilization services become increasingly prevalent. The multifaceted challenges facing genomics, both empirical and ethical, require collaborations that foster critical dialogue and honest debate between communities inside and outside the research enterprise. This works-in-progress argues that in order to respond to the premature or inappropriate use of genomic data in industry, the scientific community needs to embrace, understand, and be in dialogue about its disagreements. We begin by introducing the research framework of adversarial collaboration as a way to celebrate disagreement and then discuss ideas from the Genetics & Social Inequality chapter of our ongoing book project ‘Debating DNA’.

Sam and Daphne are currently writing a book together for Princeton University Press that unpacks various social, ethical, and policy issues related to the DNA revolution. Their goal is to present a genuine middle ground, moving past the dichotomies—interpretivist vs. positivist, qualitative vs. quantitative, optimism vs. pessimism regarding biological explanations—that vex the biosocial sciences.

Daphne O. Martschenko PhD, is a Research Fellow at the Stanford Center for Biomedical Ethics and co-organizer of the international Race, Empire, and Education Research Collective. Daphne’s work advocates for and facilitates research efforts that promote socially responsible communication of and community engagement with social and behavioral genomics.

Sam Trejo PhD is an Assistant Professor in the Department Sociology and a faculty affiliate of the Office of Population Research at Princeton University. He is quantitative social scientist interested in how social and biological factors jointly shape human development across the life-course and specialize in quasi-experimental, biosocial, and computational methods. Sam’s research capitalizes on two data sources that, until recently, were unavailable to researchers: (1) large administrative datasets and (2) longitudinal studies containing molecular genetic data.

COVID-19: Online Events

Image credit: CDC/Alissa Eckert; Dan Higgins

The SJRC has a robust network of local and international public health experts, scholars, and practitioners leading the way with collecting resources for teaching about COVID-19, writing open response letters and calls for action, and organizing and participating in online events.

 

Help Spread the Word of These Online Events

C-Span | State and Federal Covid-19 Briefings and Legislative Deliberation | (schedule)

Archived Events

February 8, 2021 | Harvard Medical School Center for Bioethics | Medical Apartheid Goes Viral: How Infection Catalyzes Bioethical Erosion with Harriet Washington (recording)

Jan 15, 2021 | Schmidt Futures + SSRC | COVID-19 — Case Studies from 23 Nations (recordings)

Dec 7, 2020 | Harvard Data Science Initiative| Trust in Science, Trust in Democracy (recording)

Sept 24, 2020 | Boston Medical Library | History in an Epidemic: The Puzzles of Covid-19 (recording)

July 23, 2020 | UCSC Molecular Diagnostic Lab | Tales from a pandemic pop-up lab with Isabel Bjork, Jeremy Sanford, Olena Vaske, and Michael Stone (recording)

July 17, 2020 | UCSC University Forum: The Lessons of COVID for Global and Community Health with Nancy Chen and Matt Sparke (recording)

July 1, 2020 | COVID-19: The scientific basis for what we know (and don’t!) and the exit strategy it provides with Marm Kilpatrick (recording)

June 22, 2020 | University Forum: Solidarity Economics for the Coronavirus Crisis & Beyond with Chris Benner (recording)

June 17, 2020 | The Subcommittee on Health of the Committee on Energy and Commerce | Health Care Inequality: Confronting Racial and Ethnic Disparities in COVID-19 and the Health Care System (recording)

May 28, 2020 | American Medical Association (AMA) | Prioritizing Equity: The Root Cause (recording)

May 27, 2020 |UC Santa Cruz Institute for Social Transformation | The Coronavirus Crisis and Social Change: Flash Talks on Social and Economic Dimensions of the COVID-19 Pandemic | Moderated by Dean Katharyne Mitchell (registration)

May 26, 2020 | UC San Diego Health | Lessons Learned: Ramping Up Telehealth Services During COVID-19 | Presented by Lawrence Friedman, Kristian Kidholm, Micaela Monteiro, and Lisa Moore (recording)

May 22, 2020 | UC Santa Cruz Department of Ecology and Evolutionary Biology | COVID-19: The Scientific Basis for What We Know and the Exit Strategy it Provides | Hosted by Infectious Disease Expert Marm Kilpatrick (recording)

May 14, 2020 | UC Santa Cruz  Institute for Social Transformation and UC Berkeley Interdisciplinary Migration Initiative| Webinar: Health Care Access, Service Delivery, and Youth Civic Engagement in the Central Valley during the COVID-19 Pandemic (recording)

May 8 – 9, 2020 | Princeton University| Pandemic, Creating a Usable Past: Epidemic History, COVID-19, and the Future of Health. | Sponsored by the American Association for the History of Medicine (AAHM) with support from Princeton University, Department of History (recording)

May 6, 2020 | UC Santa Cruz COVID-19 Team | Guy Kawaski’s Fireside Chat With UCSC Coronavirus Team | Presented by Guy Kawasaki, David Haussler, Rebecca DuBois, John MacMillan, Jeremy Sanford | Supported by UCSC’s Genomics Institute (podcast recording)

May 6, 2020 | UCSC Right Livelihood College | Water Justice in the Age of Coronavirus and Beyond | Presented by Maude Barlow (Canada), Robert Bilott (USA), and Andy Szasz (USA, moderator) (recording)

April 29, 2020 | UCSC Right Livelihood College | Women in Global Health – COVID spotlight on major challenges with Laureates Monika Hauser (Germany), Sima Samar (Afghanistan), Evan Zillén (Sweden). Moderated by Professor Nancy Chen (UCSC, Anthropology) (recording)

April 28, 2020 | UC Santa Cruz Kraw Lecture Series | Viruses & Vaccines with Rebecca DuBois (recording)

April 28, 2020 | Duke University | COVID-19 Seminar #1 with Professor Priscilla Wald on the Outbreak Narrative and Why We Need to Change the Story | Co-hosted by the Alfred Deakin Institue for Citizenship & Globalisation (ADI) and the Science and Society Network (SSN)

April 24, 2020 | Virginia Tech STS Program | STS Approaches to COVID-19: A Roundtable Discussion | (recording)

April 24, 2020 | UC Berkeley | Straight Talk: A Conversation about Racism, Health Inequities, and COVID-19 (recording)

April 20, 2020 | UNESCO | Inclusion in the time of COVID-19: International webinar addressing racism, discrimination and exclusion [we will look for a link to the recording]

April 16, 2020 | UC Davis DHI | The Geopolitics of COVID-19: Mike Davis in Conversation with Joshua Clover (recording)

April 15, 2020 | Hutchins Center for African & African American Research Project on Race & Gender in Science & Medicine, Harvard | Epidemics and African American Communities Series: from 1792 to the Present | recordings: April 15 part 1, April 21 part 2, April 23 part 3, May 6 part 4

April 7, 2020 | Global Views on COVID 19: Lessons from the 1918 Flu Pandemic in India and Indonesia | (registration)

April 1, 2020 | Intersectionality Matters with Kimberlé Crenshaw |  Age Against the Machine: The Fatal Intersection of Racism & Ageism In the Time of Coronavirus (recording)

April 1, 2020 | The National Academy of Medicine and the American Public Health Association| The Science of Social Distancing, Part 2 (recording)

March 25, 2020 | Intersectionality Matters with Kimberlé Crenshaw | Under The Blacklight: The Intersectional Failures that COVID Lays Bare, Part 1 (recording)

March 25, 2020 | The National Academy of Medicine and the American Public Health Association | The Science of Social Distancing: Part 1 (recording)

C-Span | State and Federal Covid-19 Briefings and Legislative Deliberation | (recordings)

Clear blood vile with red cap against yellow background

Forthcoming Book release! Sweetness in the Blood: Race, Risk, and Type 2 Diabetes (University of Minnesota Press, 2021)

About the Book

Clear blood vile with red cap against yellow background

Sweetness in the Blood: Race, Risk, and Type 2 Diabetes. U Minn Press, March 2021.

Decades of data cannot be ignored: African American adults are far more likely to develop Type 2 diabetes than white adults. But has science gone so far in racializing diabetes as to undermine the search for solutions? In a rousing indictment of the idea that notions of biological race should drive scientific inquiry, Sweetness in the Blood provides an ethnographic picture of biotechnology’s framings of Type 2 diabetes risk and race and, importantly, offers a critical examination of the assumptions behind the recruitment of African American and African-descent populations for Type 2 diabetes research.

James Doucet-Battle begins with a historical overview of how diabetes has been researched and framed racially over the past century, chronicling one company’s efforts to recruit African Americans to test their new diabetes risk-score algorithm with the aim of increasing the clinical and market value of the firm’s technology. He considers African American reticence about participation in biomedical research and examines race and health disparities in light of advances in genomic sequencing technology. Doucet-Battle concludes by emphasizing that genomic research into sub-Saharan ancestry in fact underlines the importance of analyzing gender before attempting to understand the notion of race. No disease reveals this more than Type 2 diabetes.

Sweetness in the Blood: Race, Risk, and Type 2 Diabetes (University of Minnesota Press, 2021) challenges the notion that the best approach to understanding, managing, and curing Type 2 diabetes is through the lens of race. It also transforms how we think about sugar, filling a neglected gap between the sugar- and molasses-sweetened past of the enslaved African laborer and the high-fructose corn syrup- and corporate-fed body of the contemporary consumer-laborer.

The book will be available in March 2021 at: https://www.upress.umn.edu/book-division/books/sweetness-in-the-blood

Learn more in this campus news article, Uncovering the social factors lurking within diabetes risk.

About the Author

James Doucet-Battle is an Assistant Professor in the Department of Sociology and Fall 2020 Interim Director of the Science & Justice Research Center at the University of California, Santa Cruz. He is a graduate of the University of California, Berkeley/University San Francisco Joint Medical Anthropology Program. His research and teaching interests lie at the intersection of science, technology and society studies, development studies and anthropological approaches to health and medicine. He applies these interests to study the political economy of genomic discourses about race, risk, and health disparities.

March 09, 2020 | Personalizing medicine through genomics in Denmark

Monday, March 9, 2020

12-1:30 PM

UC Santa Cruz Genomics Institute

Westside Research Park: 2300 Delaware Ave., Santa Cruz

Double Helix Conference Room

In this talk, Iben M. Gjødsbøl (Assistant Professor Centre for Medical Science and Technology Studies, Department of Public Health, University of Copenhagen) draws upon ethnographic research carried out in Denmark to give an account of how genomic science and technology is being introduced in the health care system to better personalize medicine to the individual patient. To push forward biomedical research and clinical care, in 2018 the Danish government decided to establish a National Genome Centre for collecting and storing copies of patients’ genomic sequences and genetic analyses. At a moment in which knowledge and thus value is accrued from Big Data, Denmark flags itself as being among the most data-intense and digitalized societies in the world, possessing unique data sources for the population sciences. Policy makers, researchers, and health professionals are all unified in their perception that the National Genome Center is a natural continuance of the Danish state institutions’ tradition of collecting information about its citizens. Yet although most actors engaged in precision medicine agree on this general narrative, setting up new infrastructures for genomic data and making it useful in the clinic is not straightforward. To make precision medicine through genomics involves quandaries about access to health care; balancing public-private governance in a welfare state; the relationship of science to the clinic; and division of labor and responsibilities between professions. It also raises doubts about what data is useful and worthy of storing and thus fundamental questions about what constitutes valuable knowledge. As solutions to these questions are negotiated and settled, they simultaneously reconfigure responsibilities for both institutions, professionals, and citizens in the Danish health care system.

Iben M. Gjødsbøl’s primary fields of research are medical anthropology, medical science and technology studies. My research explores how medical technologies and clinical practices shape our understandings and experiences of health and illness. I do ethnography in health care settings, exploring how personhood and the value of life are constituted in the everyday clinical practices in the Danish welfare system. My PhD research concerned how life’s worth is practiced and experienced in the field of dementia, including both clinical and care settings. Currently, I am Assistant Professor at the Section for Health Services Research, Department of Public Health. My current research explores how personalized medicine is realized within cardiology in the Danish health care system. This research project forms part of the larger project ‘Personalized Medicine in the Welfare State’, MeInWe, headed by Professor Mette N. Svendsen. Learn more here.

Seating is limited. RSVP at bit.ly/PersMedDenmark.

To accommodate a disability, please contact Ben Coffey at the UC Santa Cruz Genomics Institute (becoffey@ucsc.edu, 831-459-1477).

Sponsored by the UC Santa Cruz Genomics Institute

December 03, 2019 | Forensic Genomics: New Frontiers and New Considerations

Tuesday, December 03

4:00-6:00pm

Namaste Lounge

Science & Justice Visiting Scholar and UC Santa Cruz Anthropology Alum, Cris Hughes, unites academics and forensic practitioners to discuss historical and current field training, genomic technological applications in forensic investigations, the problems and limits of interpretation, the resources available, and the incentives practitioners face tied to case resolution.

In addition, the event will focus on the societal and ethical questions raised by novel uses of genetics/genomics in forensics work. Think Golden Gate killer case, in which law enforcement used a publicly available server with genomic information from thousands of individuals who have completed commercial ancestry kits, to find potential leads for the assailant in question, a use not anticipated by many users of this ‘recreational’ service. There are also many difficult questions about whether and how DNA technologies are being used to identify ‘race’ or ‘ethnicity.’ As with any science with a public impact, thinking critically about the balance between ELSI (Ethical, Legal and Social Implications) concerns and the need to solve cases is an essential part of responsible science. For example, looking at police and lay perceptions of race, ancestry, and physical appearance, as well as the caveats with new genetic tools like HIrisPlex and Parabon’s® Snapshot® that are being incorporated into case investigations at an alarming rate.

This event follows the outcomes of the recently launched Forensic Genomics for Investigators course first offered for California investigators through P.O.S.T. November 12, 2019 here in Santa Cruz.

Bridget F.B. Algee-Hewitt is a biological anthropologist at Stanford University who studies skeletal and genetic trait variation in modern humans. Her research combines data analytic and hands-on laboratory approaches to the estimation of the personal identity parameters – like sex, ancestry, stature, and age – that are essential components of the biological profile used in forensic identification of unknown human remains and for the paleodemographic reconstruction of past population histories in bioarchaeology. Concerns for social justice, human rights, and issues of group disparities underlie much of her work. As a practicing forensic anthropologist and geneticist, she provides forensic casework consultation to the medico-legal community.

Ed Green is an Associate Professor of Biomolecular Engineering at UCSC and a principle investigator for the Paleogenomics lab. The Green lab, is interested in genome biology, particularly focused on the problems of assembly and comparative genome analysis. Recent and ongoing projects include genome-scale analysis of archaic human genome sequence, comparative genomics of Crocodilia, and the development of new methods to assemble high quality de novo genomes. The lab is also interested in applying high-throughput sequencing to address questions in molecular biology including the evolution of gene expression, alternative splicing, and population genetics.

Lars Fehren-Schmitz is both a physical anthropology professor at UCSC and principle investigator for the Human Paleogenomics lab. His research focuses on furthering the understanding of South American population history through altitude adaptation and human-environment systems.

Cris Hughes is a forensic anthropologist interested in perceptions of race, and the use of ancestry in both forensic investigations and the practice of forensic anthropology. Cris uses genetic and skeletal data to study estimates of ancestry in present day Latin American populations and is particularly interested in how ancestry as a piece of information drawn from the body, can impact the identification process of that person. As an Assistant Clinical Professor of Anthropology, University of Illinois at Urbana-Champaign, Cris has lectured at  annual Genomics for™ workshops (e.g. Genomics for™ Teachers, Genomics for™ Judges, Genomics for™ Prosecutors, and Genomics for™ Police) since 2013 as an outreach affiliate for the Carl R. Woese Institute for Genomic Biology at the UIUC. Recently, Cris’ work with ancestry is centered around the deaths of migrants along the US-Mexico border. Cris is a visiting scholar with the UC Santa Cruz Science & Justice Research Center, and UC Santa Cruz Anthropology alum.

Co-Sponsored By: The UC Santa Cruz Science & Justice Research Center, the Institute for Genomic Biology at the University of Illinois at Urbana-Champaign, the UC Santa Cruz Institute for Social Transformation, Colleges Nine and Ten, the Anthropology and Sociology Departments, the Human Paleogenomics Lab, the UC Santa Cruz Genomics Institute, The Humanities Institute, and the Center for Racial Justice.

Rapporteur Report by Dennis Browe

Forensic Genomics: New Frontiers and New Considerations aimed to explore the big-picture issues of recent, rapid advancements in forensic genomics through an ELSI lens (ethical, legal, & social implications) of novel technologies. Jenny Reardon, Founding Director of the Science & Justice Research Center (SJRC), gave introductory remarks highlighting how this topic – the entanglements of race and genomics – has been a long-standing concern and an ongoing line of inquiry within the SJRC. Thus, for Dr. Reardon, hosting this event was a delight as it is part of a constellation of events and working groups. This event also served as a public follow-up to the recently launched Forensic Genomics for Investigators course first offered for investigators through California’s Commission on Peace Officer Standards and Training (P.O.S.T.) on November 12, 2019 in partnership with SJRC, the Institute for Genomic Biology at the University of Illinois at Urbana-Champaign, and the Santa Cruz County Sheriff’s Office.

As the lead course instructor and event’s convener and moderator, Dr. Cris Hughes (Assistant Clinical Professor, University of Illinois at Urbana-Champaign and S&J Visiting Scholar), began with an overview of the current state of genomic technologies, their use in forensic investigations by law enforcement for solving crimes, and the vital ethical and societal issues raised by these technologies that must be attended to. If the main tension raised during this event could be summarized in one thought, it would be: How can the growing use of forensic genomics to serve the needs of law enforcement for solving violent crimes be balanced against concerns about both privacy and malfunctions of justice that many have when it comes to increased surveillance by law enforcement? Or, how are novel forensic genomics tools actually being used, how can they be used, and how should they be used?

Dr. Hughes began by reviewing how DNA is used in forensic investigations by law enforcement. A multi-state DNA-database pilot program was established by the FBI in 1990, which then expanded into a national DNA database after Congress passed the DNA Identification Act in 1994. The database is known as CODIS (Combined DNA Index System). Using the genetic markers in the database for identification of DNA allows investigators to make a 1:1 match – there is such high probability that many think of it as a purely objective decision. However, even during the founding of CODIS, many raised questions about the privacy implications of our government managing DNA from individuals; The government responded by arguing that CODIS was a database, first, for offenders only, and second, that CODIS used genetic markers only from the “junk DNA” region of the genome, meaning that since this is not a protein-coding region there would be no threats to privacy of individuals. Part of the impetus of this event is that the notion of “junk DNA” is turning out to be misleading, as there are more identifiable genetic markers in this “junk” region of the genome than previously assumed.

Dr. Hughes assessed the pros and cons of using CODIS for forensic investigations. The database, being wrapped in bureaucratic regulations, is steady and accurate when it works. It has gone through decades of validation and analysis and there is extensive consistency in the methods used for interacting with CODIS. Also, since CODIS is tied in with a multitude of laws and regulations, change to using the system and database comes very slowly: this allows for time to assess and critique ELSI impacts related to its procedures. However, the nature of CODIS as slow-moving and heavily regulated places limits on the capabilities that investigators have for working with DNA evidence. Since forensic genetic technologies are rapidly evolving, for Dr. Hughes and others it is necessary to question the benefits and drawbacks of CODIS compared to novel methods that could be used by law enforcement for solving crimes. Dr. Hughes stated that we are again at a moment of “new tech, old concerns: privacy and surveillance, bias, policy and regulation, etc.”

Each expert panel member then presented on how they work with forensic genomics either directly or indirectly, also highlighting the tensions of and in their work. Bridget F.B. Algee- Hewitt, a biological anthropologist at Stanford working at the intersections of forensic science, computational biology, and social justice, helps to identify the bodies of migrants who have died crossing the US-Mexico border, highlighting a kind of double-edged sword of forensic technologies. Her work on CODIS STRs (a type of genetic marker, which she then matches to SNPs (single-nucleotide polymorphisms) in CODIS) can help migrant families identify their lost loved ones, but these scientific techniques can simultaneously help ICE (U.S. Immigration and Customs Enforcement) with its surveillance and targeting of migrants for punitive purposes.

A tension surfaced between the other two panelists’ presentations in a humorous way, which, tellingly, captures the main tension of forensic genomics identified by Dr. Hughes: finding a balance between working with law enforcement to solve crimes and being wary of law enforcement due to its history of perpetuating injustices against communities it has sworn to protect (as evidenced by the long history of the racism of U.S. police as a whole). During his presentation, Lars Fehren-Schmitz (associate professor of physical anthropology at UCSC), quipped that he is hesitant to work with law enforcement (presumably for the reasons just mentioned). Ed Green (associate professor of biomolecular engineering at UCSC) then replied by stating that he “likes working with the police, a lot. If someone gets murdered, they [the perpetrator] should be caught.” Further, in opposition to worries about increased surveillance that may come about through novel forensic genomics technologies, Dr. Green feels that there is a “democratization of genomics and forensics happening. It is more citizen-driven.” Riding this tension in its many dimensions will continue to be a key issue as these technologies develop which threaten the ubiquitous use of the FBI’s CODIS database, especially as law enforcement offices are beginning to look to outside labs for their assumed superior technical capabilities (and their lack of regulations) to conduct forensic DNA investigations.

A fast-paced discussion with the audience then followed, covering a number of topics:

Accreditation standards and best practices: Dr. Hughes questioned whether new forensics labs should be expected to adhere to the same standards of labs using CODIS DNA, since many of these emerging labs lack accreditation standards. The panelists weighed the pros and cons of accreditation – what it can help with and what it might fail to cover. For Dr. Fehren-Schmitz, accreditation gives some semblance of security (if a lab is accredited it is assumed that it will follow best practices and do good science), yet, in his experience, just having these policies and procedures in place does not necessarily guarantee the best results. He gave an example of how relying on being accredited can actually lead to lazy scientific practice. Dr. Hughes then touched

on the question of best practices: making best practices too specific requires a massive amount of labor to continually update guidelines to keep up with quickly emerging forensic technologies, yet if best practices guidelines are too general they won’t actually regulate anything. For example, the use of familial searching of genealogical databases by investigators is highly regulated on a state-by-state basis. Perhaps, offered Dr. Hughes, focusing on policy regulation is more necessary than accreditation itself?

Assisting law enforcement with informed decision-making processes: related to best practices is the question of how to help law enforcement decide what forensic technologies and labs to use or not use. How, for example, can we help law enforcement vet particular high-quality (ideally not-for-profit) labs over other labs? How can forensic geneticists aid law enforcement in making these decisions? Dr. Green mentioned one “obvious thing”: make sure to communicate the technical aspects of what cannot be done with the DNA versus what can be done from the very beginning of responding to requests by law enforcement. For Dr. Hughes, one issue is that law enforcement is expected to be experts in everything, which leads to a lack of specific knowledge in technical aspects of crime solving such as using DNA evidence. She would like to build a network of scientific consultants that aren’t necessarily tied to for-profit forensic labs, to help law enforcement vet which labs to turn to for DNA analysis and technical assistance.

Scientific genetic literacy: For Dr. Fehren-Schmitz, the question of assisting with informed decision-making processes is tied directly to scientific literacy (or lack thereof) concerning genetics of the general population and even law enforcement offices. He stated that “we can make it seem like magic because people don’t have basic information about how genetic information is inherited, what genotypes and phenotypes are.” Thus, the market is open for things like “Soccer DNA,” a company that uses genetic pseudoscience to tell customers if their DNA gives them a natural talent for excelling at soccer. Dr. Algee-Hewitt agreed with this, stating that “nothing makes [her] life more difficult than seeing commercials for direct-to- consumer genetic ancestry testing.” These commercials advance the concept that, say, a value of 7% “Scandinavian” or “East Asian” DNA is an important part of the customer’s identity; yet, as geneticists know, such a small value is often not a meaningful value (if itis within the range of error). For her, a main job for scientists is to relay quality information to the general public and to push back against the dissemination of false information such as that being pushed in these commercials.

National Differences: The issue was raised about national differences in ways that forensic scientists are asked to work with law enforcement. The details matter, and any discussions must be situated within the contexts of national laws, regulations, and accepted best practices. For example, in different countries, forensic experts will have different roles to play in the criminal case: in some countries scientists will be asked to testify in trials as expert witnesses while in other countries experts will never participate in a trial but will provide the scientific legwork for law enforcement to press charges. Here, Dr. Algee-Hewitt stressed a key point: the science must be done well. If the DNA forensics work does not get done right, from the very beginning, nothing in the investigative case will get done properly. For her, concerned as she is with questions of social justice, DNA forensics is never just a number or a case, but is much bigger, with implications that will greatly affect families and communities.

Looking Toward the Future: With the rapid development of technologies for forensic genomics, Dr. Hughes stressed that a key theme of the event was looking toward the future: “What do we do with the potential of these new technologies?” For example, as both Dr. Green and Dr. Algee-Hewitt demonstrated, we now know “there is no real junk DNA.” Whereas CODIS, built in the early 1990s, was premised on the fact that certain genetic markers would help identify and match individuals based on their DNA profiles but tell nothing else, scientists are increasingly showing how related genetic markers can potentially (probabilistically) reveal much more about a person, such as their ancestry and other traits.

Dr. Hughes ended the event by making a case and a plea for the importance of building bridges between scientists, the public, and law enforcement: she and others at SJRC and beyond are continuing to build a table for many to gather around to discuss the growing uses of forensic genomics and how we are able to respond to the need for expanded genetic literacy by offering future iterations of the Forensic Genomics for Investigators course. For Dr. Hughes, we must put front-and-center vital questions about the balance between maximizing the utility of this science and raising concomitant questions of ethics and justice.

November 12, 2019 | Forensic Genomics for Investigators P.O.S.T. Course

8:30am – 5:00pm

Santa Cruz County Sheriff’s Office Community Room

5200 Soquel Avenue, Santa Cruz, CA 95062

Course Description

This 8-hour course is designed to assist understanding and engagement with new genomic technologies that are increasingly common as investigative leads, such as, DNA-predicted physical appearance (hair/eye/skin color, face shape) and ancestry estimations.

This course provides foundational information about the use and limitations of genomic technologies in the context of casework (both criminal and missing persons). Through activities and discussions, course participants will engage some of the common contexts in applying these DNA evidences to casework, such as translating ancestry to race labels, accounting for the accuracy of the genetic prediction in your investigation, and using the genetic results to narrow down your leads.

The course also offers a step-by-step guide to deciding which investigative genetics technology is right for an array of casework contexts (e.g. low quality DNA, DNA mixture, lead or no lead, skeletal DNA, touch DNA, diversity of suspect pool).

Cost

No fee

Objectives

To improve the attendee’s understanding of the uses and limitations of genetic predictors of physical appearance and ancestry in case investigations. To develop a protocol for assessing the most useful genetic test (beyond CODIS), given the quality of the DNA and the case context. To provide a network of genetic researchers and practitioners for consultation.

Prerequisites and Eligibility

Must be currently employed by a Law Enforcement Agency. Participation in this workshop is limited to law enforcement practitioners where having an up-to-date grasp of genomic technological applications is imperative. This workshop is formatted and approved as an accredited continuing education course through the Commission for Peace Officers Standards and Training for California law enforcement.

Special Instructions 

An anonymous survey may be emailed to you prior to the start of the course to better understand the incoming perspectives and interests of the attendees.

To Register

Qualified participants are to enroll through https://post.ca.gov/Training. Contact Dr. Cris Hughes at postgenomicscourse@gmail.com refer to POST Plan: N/A POST Course Number: 3180-11160-19. Participation will be capped at 65 attendees.

For information about the hosting agency, contact Dr. Lauren Zephro; lauren.zephro@santacruzcounty.us.

Course Instructors

Dr. Cris Hughes, Assistant Clinical Professor, University of Illinois at Urbana-Champaign

Dr. Alison Galloway, Professor Emerita of Anthropology, UC Santa Cruz 

Dr. Chelsey Juarez, Assistant Professor, California State University, Fresno

Dr. Lauren Zephro, Forensic Services Director, Santa Cruz County Sheriff’s Office

Sponsored By

The UC Santa Cruz Science & Justice Research Center, the Institute for Genomic Biology at the University of Illinois at Urbana-Champaign

Outcomes

This course preceded an on-campus panel discussion Forensic Genomics: New Frontiers and New Considerations, hosted by the SJRC, aimed to explore the big-picture issues of recent, rapid advancements in forensic genomics through an ELSI lens (ethical, legal, & social implications) of novel technologies. The description and rapporteur report can be found at: https://scijust.ucsc.edu/2019/12/03/dec-03-forensic-genomics/ .

Jenny Reardon standing in front of a fountain at the Vatican.

Debates on the wild frontier of genomics reveal where the real frontier lies

In the UC Santa Cruz Magazine, Jenny Reardon, Professor of Sociology and Director of the Science & Justice Research Center, releases article on ‘Debates on the wild frontier of genomics reveal where the real frontier lies’.

The article can be found at: https://magazine.ucsc.edu/2019/10/debates-on-the-wild-frontier-of-genomics-reveal-where-the-real-frontier-lies/

Developing: Debate on ‘Race’ and Genomics

In March 2018, 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 following weeks and months, a debate took shape. This page will continue to follow this debate. It 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.

In May 2019, Angela Saini published her book Superior: The Return of Race Science. This book takes up questions of scientific racism and its history, as well as its more recent relationship with genetics and genomics. Reviews and responses to the book are also linked and covered here.

 

Resources (updated regularly, last updated May 30, 2019):

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:

  • Sam Harris, Charles Murray, and the Allure of Race Science – Vox, March 27, 2018
    • Ezra Klein discusses a debate between himself and Sam Harris reignited by Reich’s op-ed, arguing, in short, that “in this country, given our history, discussions about race and IQ need more care and context than they get.”
  • Denying Genetics is Not Shutting Down Racism, It is Fueling it – New York Magazine, March 30, 2018
    • Andrew Sullivan agrees with Reich’s op-ed, and argues that dismissing science as “racist” helps fuel racism.
  • Race, Genetics and a Controversy – The New York Times, April 2, 2018
    • A series of letters to the editor in response to Reich’s op-ed.
  • Scientific Racism Isn’t ‘Back’: It Never Went Away – The Nation, April 6, 2018
    • Edward Burmila argues that Reich’s op-ed is merely the latest example of scientific racism, which is finding new purchase in the current political climate.
  • What Happens When Geneticists Talk Sloppily About Race – The Atlantic, April 25, 2018
    • Ian Holmes argues that biologists’ use of race as a category often reinforces historical biases.
  • Stop Talking about Race and IQ – Slate, April 27, 2018
    • William Saletan reflects on his past as a believer in the scientific validity of racial IQ disparities and argues that “the genetics of intelligence” and “the genetics of race” are, and should remain, separate fields of research.
  • Race Has a Place in Human Genetics Research, Philosopher Argues – Penn Today, May 2, 2018
    • Michelle Berger profiles Penn philosopher Quayshawn Spencer, who uses semantic theory to reconcile US Census racial categories with population geneticists’ ancestry groups and encourages collapsing the former into the latter.
  • Push for Forensic DNA Phenotyping, Ancestry Testing in Germany Raises Discrimination Concerns – Genome Web, May 4, 2018
    • Turna Ray describes the concerns surrounding legislation introduced in the Bavarian parliament that would allow DNA collection from ‘dangerous’ individuals and forensic DNA phenotyping of crime scene samples. Chief among these concerns is discrimination against immigrants.
  • Observations: “Plug and Play” Genetics, Racial Migrations and Human History – Scientific American, May 29, 2018.
    • John Edward Terrell discusses Reich’s book and argues that writing about “populations,” “migration,” and “admixture” reinforces ideas about separate human groups in potentially dangerous ways.
  • James Watson Had a Chance to Salvage His Reputation on Race. He Made Things Worse. – The New York Times, January 1, 2019.
    • Scientists debate the reasons for James Watson’s re-assertion that differences in IQ between “blacks and whites” are genetic.  Is this just an “old man” out of step with his time, or is he part of a dominant but rarely spoken view in genomics, a view that appeared to be bolstered in the spring by David Reich’s editorial in The New York Times?
  • Is Ancient DNA Research Revealing New Truths — or Falling Into Old Traps? – The New York Times Magazine, January 17, 2019.
    • Gideon Lewis-Kraus explores how Reich’s ancient DNA work has challenged existing archaeological consensus and transformed the academic landscape. He points out that the pressure to work with the handful of powerful ancient DNA labs, which he calls an “oligopoly,” is strong enough to create a “smash-and-grab” environment of “suspicion, anxiety, and paranoia.” Lewis-Kraus also characterizes this as setting up a divide between “those [like Reich] bewitched by grand historical narratives… and those who wearily warn that such adventures rarely end well.” He thoughtfully explores the practical agendas of racialized histories and forms of knowledge that claim to say who people “really” are and where they are “really” from, describes some of the scientific concerns and broader controversy surrounding ancient DNA research in particular, and ultimately connects the claims in Reich’s op-ed to his “broad brush” view of history.
      • Response: Letter in response to Jan. 17 article in The New York Times – David Reich, January 19, 2019
        • Reich responds to Lewis-Kraus, admitting that ancient DNA research faces unresolved ethical issues but also arguing that Lewis-Kraus misapprehends the rigor and nuance of the science to make his argument. Reich argues that his research has “rendered racist and colonialist narratives untenable.”
  • Genetics and Race: How Do We Have This Awkward Conversation? – Genetic Literacy Project, February 13, 2019.
    • Patrick Whittle argues that “genetic facts — including evidence of genetic differences between racial populations — carry no necessarily social or political implications,” and that confirmation of human difference may aid in designing policies to reduce inequalities. He also suggests that human geneticists should acknowledge the history and politics of ideas of race and understand the motives of what he calls “the opposition.”

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.”
  • Neanderthals, Denisovans and Modern Humans – London Review of Books, September 13, 2018
    • Steven Mithen reviews Reich’s Who We are and How We Got Here. He notes that ancient DNA research has “implications for the politics of the present,” mentions the Buzzfeed-published response to Reich’s treatment of race. Ultimately, he argues that population genomics, while illuminating, ultimately stand on equal footing with culture and beliefs as ways of defining ‘who we are.’

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:

 

Superior: The Return of Race Science  – Angela Saini, May 21, 2019
  • Why Race Science is on the Rise Again – The Guardian, May 18, 2019
    • Angela Saini describes her new book, Superior: The Return of Race Sciencewhich focuses on the renewed growth of “intellectual racism” and its ties to global right-wing populist movements. She traces race science back to modern science’s earliest days, highlights its inherently political nature, and expresses concern for its growing acceptance in mainstream scientific publications.
  • The Disturbing Resilience of Scientific Racism – Smithsonian Magazine, May 20, 2019
    • Ramin Skibba reviews Saini’s book, drawing on W.E.B. Du Bois to argue that the “problem of the color line” has persisted in the 21st century and taken root in the field of genetics. He highlight’s Saini’s insistence on both keeping the study of race, a social construct, out of genetics research and studying race responsibly in other disciplines.
  • Medical Controversies – Start the Week, BBC Radio, May 21, 2019
    • Andrew Marr discusses a number of medical controversies with guests, including Angela Saini. Saini discusses her new book, and the panel discusses how race science has made a return to the mainstream. The program also deals with gender bias in medical research and with how personalized medicine reproduces existing inequalities.
  • Superior: The Return of Race Science by Angela Saini – review – The Guardian, May 27, 2019
    • Alok Jha writes, “This is an urgent, important book.” He observes that racialized science has proceeded “in the name of academic freedom to conduct dispassionate inquiry into the human condition” and notes the book’s timeliness amid the resurgence of white supremacist and authoritarian movements.
  • Superior by Angela Saini – are we all created equal? – Financial Times, May 29, 2019
    • Clive Cookson favorably reviews Saini’s new book but objects to the suggestion that “scientists refrain from investigating the genetic basic of human variation in intelligence and intellectual ability.” He suggests that this research is important to science’s attempts to understand “the brain,” as long as it is “conducted with proper safeguards.”
  • Why Do So Many Researchers Still Treat Race as a Scientific Concept? – Slate, May 30, 2019
    • Tim Requarth calls Saini’s book “damning” and says that she is not simply pointing out the abuse of science for racist political ends, but is telling a “complex and surprising story about the relationship between science and race today, one that is sure to challenge anyone who thinks these ideas are only kept afloat by avowed racists.” Requarth specifically mentions David Reich’s op-ed as an example of racialized science.
      • Requarth ends with a salient point for Science & Justice: “Scientists are required to take ethics courses, but these courses tend to focus on the ethical behaviors of scientists and the ethical ramifications of science. In other words, we consider how science percolates out of the lab and into the broader culture. What we tend not to address is how the broader culture finds its way back into the lab to influence our science. A small step would be for us to spend more time thinking not only about how our science shapes society, but also how society shapes our science. (After reading Saini’s books, I suggested we add such a section to the ethics course my department offers.) The best scientists relentlessly question their own scientific assumptions. It might make for even better science if they used this same self-awareness to question their cultural ones.”

 

May 08, 2019 | Works-in-Progress with James Doucet-Battle

Wednesday, May 08, 2019

4:00-5:30 PM

SJRC Common Room, Oakes 231

Join SJRC scholars in the SJRC Common Room for an open discussion of works-in-progress! This is a wonderful chance to engage with one another’s ideas, and support our own internal work. At this session, we will hear from Assistant Professor of Sociology, James Doucet-Battle who will discuss his book project entitled, Recruiting Sweetness: Translating Race, Risk, and Gender in Type 2 Diabetes Research, that explores the knowledge production emerging from the increasing importance of biological and racial difference in diabetes research since the genomic revolution.

James Doucet-Battle is Assistant Professor of Sociology at UC Santa Cruz. His Ph.D. is in Medical Anthropology, University of California, Berkeley/University San Francisco. James’ research interests include health disparities, race, and medicine; power, subject-making, and citizenship; ethnography, political economy, grounded theory: diasporic and transnational Africa.