precision medicine

April 24, 2014 | Precision Public Health After Covid-19

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Wednesday, April 24, 2024

4:00-5:30 PM

SJRC Common Room Oakes 231 + Zoom (registration)

Join SJRC scholars in Oakes 231 (or on Zoom) for an open discussion! 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 Martha Kenney (Department Chair, Women & Gender Studies, San Francisco State University) and Laura Mamo (Health Equity Institute Professor of Public Health, San Francisco State University) on precision public health after Covid-19.

In the mi-2010s, a new paradigm called precision public health has emerged—part genomics, part informatics, part public health, and part biomedicine, touted as a data-driven public health revolution. This presentation reflects on the promises of precision public health in light of the Covid-19 pandemic, looking at how the “precision imaginary” has shifted when confronted with a global health crisis that exacerbated health inequities worldwide.

Martha Kenney (Ph.D. History of Consciousness, UC Santa Cruz) is a feminist science studies scholar whose research explores the poetics and politics of biological storytelling. Her current project examines and intervenes in the narratives emerging from the new field of environmental epigenetics, which studies how signals from the environment affect gene expression. Specifically, she looks at how assumptions about gender, race, class and sexuality influence the design of epigenetic experiments on model organisms and how we understand the relationship between bodies and environments. She has recent and forthcoming articles in Social Studies of Science, Science as Culture, Biosocieties and Catalyst: Feminism, Theory, Technoscience. Dr. Kenney teaches courses on the politics of science, technology, medicine and the environment.

Laura Mamo is the Health Equity Institute Professor of Public Health. Her work lies at the intersection of medical sociology, gender and sexuality studies, and cultural studies of science, technology and medicine. Her research and teaching focus on sexuality and its politics in medicine, science, and health discourse, practice, and resistance. Mamo is the author of the forthcoming book, Sexualizing Cancer: HPV and the Gendered Politics of Cancer Prevention (University of Chicago Press, 2023); Queering Reproduction: Achieving Pregnancy in the Age of Technoscience (Duke University Press, 2007); co-author of Living Green: Communities that Sustain (New Society Press, 2010); and co-editor of Biomedicalization Studies: Technoscience and Transformations of Health, Illness and U.S. Biomedicine (Duke University Press, 2010). Mamo is the co-founder of The Beyond Bullying Project, a multimedia school-based queer sexuality and gender project with Jessica Fields, Jen Gilbert and Nancy Lesko. Mamo’s research has received funding from the National Science Foundation, the Ford Foundation, the Robert Wood Johnson Foundation, and others. Mamo earned her PhD in 2002 from UCSF and BA from University of Wisconsin, Madison. She joined the faculty at SFSU as Health Equity Professor of Public Health in 2010 following appointments as Assistant Professor and Associated Professor of Sociology at the University of Maryland, College Park.

Book cover for Can precision medicine be personal; can personalized medicine be precise? (2022)

Book Release! Can precision medicine be personal; can personalized medicine be precise? (Oxford University Press, 2022)

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About the Book

Can precision medicine be personal; can personalized medicine be precise? (2022)

People have always sought medical care that is tailored to every individual patient. Alongside with the historical development of institutions of care, the vision of personal and ‘holistic’ care persisted. Patient-centred medicine, interpersonal communication and shared decision making have become central to medical practice and services.

This evolving vision of ‘personalized medicine’ is in the forefront of medicine, creating debates among ethicists, philosophers and sociologists of medicine about the nature of disease and the definition of wellness, the impact on the daily life of patients, as well as its implications on low-income countries. Is increased ‘precision’ also an improvement on the personal aspects of care or erosion of privacy? Do ‘precise’ and ‘personalized’ approach marginalize public health, and can this care be personalized without attention to culture, economy and society?

The book provides a multidisciplinary and interdisciplinary discussion of the ethos and ethics of precision/personal medicine, involving scientists who have shaped the field, in dialogue with ethicists, social scientists and philosophers of science. The contributing scholars come from all over the world and from different cultural backgrounds providing reflective perspectives of history of ideas, critical theory and technology assessment, together with the actual work done by pioneers in the field. It explores issues such as global justice, gender, public health, pharmaceutical industry, international law and religion, and explores themes discussed in relation to personalized medicine such as new-born screening and disorders of consciousness.

This book will be of interest to academicians in bioethics, history of medicine, social sciences of medicine as well as general educated readers.

About the Authors

Edited by Y. Michael Barilan, Margherita Brusa, and Aaron Ciechanover with contribution by Professor of Sociology and SJRC Founding Director Jenny Reardon from their participation in the workshop, “The Revolution of Personalized Medicine: Are We Going to Cure All Diseases and at What Price?,” that took place April 8-9, 2019 in Vatican City.

Read more in this campus news article: Jenny Reardon participates in Vatican workshop on personalized medicine.

March 09, 2020 | Personalizing medicine through genomics in Denmark

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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

January 21, 2020 | Works-in-Progress with Alondra Nelson: “Even a Moon Shot Needs a Flight Plan: Genetics and Ethics in the Obama Administration”

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Tuesday, January 21, 2020

4:00-6:00 PM

RELOCATED: Louden Nelson Center, Room 3, 301 Center St, Santa Cruz, CA (map)

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, longtime friend and SJRC colleague, Alondra Nelson, will discuss with us her current work on precision medicine.

Even a Moon Shot Needs a Flight Plan: Genetics and Ethics in the Obama Administration
In May 27, 2016, Barack Obama became the first sitting American president to visit the site of the world’s first atomic bombing. In a speech that day at the Hiroshima Peace Memorial Park, Obama proclaimed that the “scientific revolution that led to the splitting of an atom requires a moral revolution as well.” In this lecture, Dr. Alondra Nelson considers the “politics of ethics” that was a signature of the Obama administration’s approach to science and technology. This politics of ethics endeavored to place temporal distance between scientific research of the past and present, enabling claims about the importance of federal science to national wellbeing, broadly conceived. In particular, she will examine the roll-out of the Precision Medicine Initiative that incorporated plainspoken acknowledgement of prior discrimination in government-backed scientific research as a necessary predicate to the successful enrollment of research subjects—especially those from minority populations—into the program.

Alondra Nelson, President of the Social Science Research Council and Harold F. Linder Professor at the Institute for Advanced Study in Princeton, is an acclaimed researcher and author, who explores questions of science, technology, and social inequality. Nelson’s books include, Body and Soul: The Black Panther Party and the Fight against Medical Discrimination; and The Social Life of DNA: Race, Reparations, and Reconciliation after the Genome. She is coeditor of Genetics and the Unsettled Past: The Collision of DNA, Race, and History (with Keith Wailoo and Catherine Lee) and Technicolor: Race, Technology, and Everyday Life (with Thuy Linh N. Tu). Nelson serves on the board of directors of the Teagle Foundation and the Data & Society Research Institute. She is an elected Fellow of the American Academy of Political and Social Science and of the Hastings Center, and is an elected Member of the Sociological Research Association.

Co-Sponsored by the UC Santa Cruz Genomics Institute.