Meet the Just Data? Panel


Dialogue 1 – Big Data + Precision Medicine


Michael Troncoso

Michael Troncoso (Managing Counsel, Health Law & Medical Center Services, University of California, Office of General Counsel)

Michael Troncoso advises the University of California health system on legal issues arising at the intersection of technology and healthcare. In addition to general health law and regulatory matters, he focuses on cybersecurity, data privacy, technology transactions, and computational health sciences matters at UC Health. As a former prosecutor and senior government official, he also regularly advises UC on complex fraud and abuse issues. Mike formerly served as chief counsel and chief of public policy in the California Attorney General’s office and as chief campus counsel at UC Santa Cruz, overseeing all legal affairs for UCSC. Outside of work, Mike works with a few international groups working through the ethical and legal implications of advances in precision medicine and novel use cases for data analytics.


Janet Shim

Janet K. Shim (Associate Professor of Social and Behavioral Science, UC San Francisco)

Janet K. Shim’s research lies at the intersections of three major arenas within sociology: the sociology of health and illness, of science, technology,and medicine, and of racial, class, and gender inequality. She particularly interested in tracing the relationships between conceptions of risk, definitions of difference, the organization of biomedical science and clinical practice, and the social and cultural landscape. She is the author of the book, Heart-Sick: The Politics of Risk, Inequality, and Heart Disease (2014, NYU Press). Her current research focuses on analyzing the science of health disparities and the production of health care inequalities, including projects investigating the inclusion of race and ancestry in genomics research, and the individual- and organizational-level dynamics shaping vulnerable populations’ retention and engagement in healthcare in safety-net institutions.

 


Hannah Landecker

Hannah Landecker (Director, Institute for Society and Genetics, UC Los Angeles)

Hannah Landecker uses the tools of history and social science to study contemporary developments in the life sciences, and their historical taproots in the twentieth century. She has taught and researched in the fields of history of science, anthropology and sociology, and is the author of the book, Culturing Life: How Cells Became Technologies. At UC Los Angeles she is cross-appointed between the Institute for Society and Genetics, and the Sociology Department, where she has participated in building a new Human Biology and Society undergraduate major in the Division of Life Sciences. Her current research interests focus on the intersections of metabolism and genetics in contemporary epigenetics, chromatin biology, and cancer, how these depart from older ideas about nutrition, heredity, and energetics. She is interested in the relationship between individuality and collectivity in large scale patient data use, as well as the problems of aligning different information derived from different scales of genomic, cellular, metabolomic, behavioral and clinical investigation.


 

Haruo HalfDomeLawrence H. Kushi (Director of Scientific Policy at the Kaiser Permanente Northern California Division of Research)

Larry Kushi Sc.D. is a nutritional epidemiologist with research interests in cancer prevention and prognosis. He is Principal Investigator of the Cancer Research Network (crn.cancer.gov), a nationwide consortium of a dozen institutions to support cancer research in integrated health care settings. The CRN catalyzed the development of the Virtual Data Warehouse (VDW), a common data model that is used to support research within and across the CRN. The CRN also implemented a distributed query tool that facilitates rapid querying across institutions for preparatory-to-research and quality assurance purposes, while respecting institutional autonomy through an opt-in approach. He is also PI of the Pathways Study, a prospective cohort study of diet, physical activity, and other factors, and outcomes in 4,505 women with breast cancer, a prospective study that has followed 400 girls through the pubertal transition from age 6-7 years; and co-leads the a study examining impact of diet on bladder cancer recurrence. Among other activities, Dr. Kushi chaired the 2012 American Cancer Society Committee on Nutrition and Physical Activity Guidelines for Cancer Prevention, and advised the World Cancer Research Fund, based in London, UK, on methods for systematic literature reviews of food, nutrition and activity for breast cancer survivors. A graduate of Amherst College and the Harvard School of Public Health, he has held research and faculty positions at the Fred Hutchinson Cancer Research Center, the University of Minnesota, and Columbia University, where he was the Vahlteich Professor of Human Nutrition. He is currently Director of Scientific Policy, Division of Research, Kaiser Permanente Northern California.


Nick Anderson

Dialogue Moderator: Nick Anderson (Director, Informatics Research, UC Davis)


Nick Anderson is the Director of Informatics Research for UC Davis School of Medicine, and the Robert D. Cardiff Professor of Informatics. His research interests focus on de-identified large-scale clinical data sharing for research, in particular the processes, technologies and ethical impact of sharing such data to advance “translational” science. His focus is on biomedicine and the problems facing high-throughput data-heavy computing research are relevant to other areas of science. He is particularly interested in how researchers can use collaborative computing approaches to share and leverage human and computational resources.

 

 


Dialogue 2 – Health + Healthcare


John MattisonJohn Mattison (Chief Medical Information Officer and Assistant Medical Director, Kaiser Permanente)

John Mattison, MD, is the chief medical information officer and assistant medical director for Kaiser Permanente, the nation’s largest not-for-profit health plan and health care provider, with annual operating revenue of more than $50 billion. John began his medical career at the University of California San Diego (UCSD) and Scripps Clinic, where he practiced in many clinical settings, including primary care, preventive medicine, emergency services, critical care, hyperbaric medicine, trauma and helicopter medicine. He has dedicated his more recent career to transforming care delivery with information technology, through convergence of data liquidity through HIE, big data analytics, advanced decision support, multi-omics, personalized consumer-directed healthcare, mobile, social, behavioral economics, predictive modeling, health mentor avatars, visualization tools and UX. He is actively involved in international health data standards and is the founder of the open source initiative that led to the international XML standards for health record exchange known as the Clinical Document Architecture (CDA) and the Continuity of Care Document (CCD). He is also actively involved in state and federal policy and governance of health information exchange.


Laura Mamo

Laura Mamo (Associate Director of the Health Equity Institute, San Francisco State University)

Dr. Laura Mamo is Associate Director of the Health Equity Institute and Health Equity Institute Professor of Health Education at San Francisco State University (SFSU). As a medical sociologist, she draws on the social study of science, technology and medicine to explore the intersections of biomedicine and the life sciences with the social and cultural dimensions of gender, sexuality and health. Her research and teaching focus broadly on understanding the social and cultural shaping of health inequalities and health justice and equity. Mamo’s current research examines the science, politics, and social dimensions of viral-cancer knowledge with a focus on HPV and cancer prevention. Mamo is the author of Queering Reproduction: Achieving Pregnancy in the Age of Technoscience (Duke University Press, 2007); co-editor of Biomedicalization: Technoscience, Health, and Illness in the U.S. (Duke University Press, 2010); and co-editor of a special issue of Science, Technology and Human Values (2013) on the intersections of science, ethics and justice.


Dr. Kurt Snipes

Kurt P. Snipes, M.S., Ph.D. (Chief, Cancer Surveillance & Research Branch, California Department of Public Health)

Dr. Kurt Snipes currently serves as the Chief of the Cancer Surveillance and Research Branch (CSRB) of the California Department of Public Health. Previously, Dr. Snipes was with the Cancer Control Branch for the past 13 years, serving as a Research Scientist with the California Cancer Registry, as Chief of the California Cancer Research Program (a state-funded cancer research program that administered over $100 million in applied, biomedical, and clinical cancer research over 5 years), as Chief of Comprehensive Cancer Control, as Acting Chief of the Cancer Detection Section, and as acting Chief of the Cancer Control Branch.

As Chief of the Cancer Surveillance and Research Branch, Dr. Snipes oversees administration of the statewide California Cancer Registry and the California Behavioral Risk Factor Surveillance System as well as the Centers for Disease Control and Prevention-funded Comprehensive Cancer Control Program. These programs are California’s primary surveillance systems that enable fundamental population-based studies into variability in cancer risk and outcomes. Dr Snipes is also a member of the Board of Directors of the California Division of the American Cancer Society and California’s Assistant State Epidemiologist for Chronic Disease.


Gail Jarvik

Gail Jarvik (Head and Professor, Division of Medical Genetics, University of Washington)

Gail Jarvik MD, PhD is the Arno G. Motulsky Endowed Chair in Medicine, Joint Professor of Medicine and Genome Sciences, and Head of the Division of Medical Genetics (only the third since the founding of the division in 1957), an Adjunct Professor of Epidemiology at the UW Medical Center (UWMC) and an Affiliate Member of the Fred Hutchinson Cancer Research Center. She is a Pew Scholar in the Biomedical Sciences, and has been made a Lifetime National Associate of the National Academies, “In recognition of extraordinary service to the National Academy of Science.” She has been designated “A Local Legend from Washington” by Senator Maria Cantwell, in association with the American Medical Women’s Association and the U.S. National Library of Medicine. Her abilities as a scholar and a leader have been recognized by the National Institutes of Health, for which she chaired the Genomics, Computational Biology and Technology Study Section. In addition to that service, leading the Division of Medical Genetics and actively pursuing her own research, she continues to be a practicing clinician in Internal Medicine and Medical Genetics.

Dr. Jarvik is interested in the genetic basis of complexly inherited genetic disease and has a long-standing interest in biomedical ethics.


Garen Corbett

Garen Corbett (Director, California Health Benefits Review Program, University of California Office of the President)

Garen Corbett, MS is the Director of the California Health Benefits Review Program (CHBRP), a unique program bringing unbiased and evidence-based analysis to legislative decision-making. Garen has 20 years of health care policy and benefits experience. Previously, he was Senior Research Associate at The Heller School for Social Policy and Management and served as Deputy Director of The Health Industry Forum, which works on health payment, quality, and technology issues with leading policymakers and industry members. His research and policy analysis has focused on federal and state health policy efforts, health reform, and effective benefit design strategies.

Earlier in his career, Garen provided strategic health care benefits and management consultant services to Liberty Healthcare Group, a national medical and pharmacy supply company, and for The Segal Company, an international human resource and benefits consulting firm. In government, Garen was Assistant Director for Legislation and Policy at the Massachusetts Group Insurance Commission (GIC). At the GIC, he was responsible for managing large health benefits programs, policy and legislative activities, and research. Garen has a long-standing interest in bioethics.


Malia Fullerton

Dialogue Moderator: [Stephanie] Malia Fullerton (Associate Professor of Bioethics and Humanities, University of Washington)


Malia Fullerton, DPhil, is Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine, Adjunct Associate Professor in the UW Departments of Epidemiology and Genome Sciences, and an affiliate investigator with the Public Health Sciences division of the Fred Hutchinson Cancer Research Center. She received a PhD in Human Population Genetics from the University of Oxford and later re-trained in Ethical, Legal, and Social Implications research with a fellowship from the NIH National Human Genome Research Institute.

Dr. Fullerton’s work focuses on the ethical and social implications of genetic and genomic research, biobanking, and clinical genetic testing, including researcher and participant perspectives on data-sharing, secondary use, result return, and clinical implementation.


Dialogue 3 – Governance of Biodata


Robert Cook-Deegan

Robert Cook-Deegan (Director, Center for Genome Ethics, Law and Policy Duke University)

Robert Cook-Deegan is a research professor in the Sanford School of Public Policy, with secondary appointments in Internal Medicine (School of Medicine), and Biology (Trinity College of Arts & Sciences). He was the founding director for Genome Ethics, Law & Policy in Duke’s Institute for Genome Sciences & Policy from July 2002 through December 2012. He is the author of The Gene Wars: Science, Politics, and the Human Genome and an author on over 250 articles.

Dr. Cook-Deegan’s areas of expertise include genomics and intellectual property, history of genomics, global health, science and health policy, and health research policy. His current research focuses on policy implications of genomics, bioethics, intellectual property, and innovation.

 


Nanibaa' Garrison

Nanibaa’ A. Garrison (Assistant Professor in the Division of Bioethics, Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute)

Dr. Nanibaa’ A. Garrison joined the Division of Bioethics as an assistant professor in October 2015 and is active in bioethics research, education and consultation at the Treuman Katz Center for Pediatric Bioethics.

Dr. Garrison is the recipient of a K01 career development award through NHGRI to explore American Indian stakeholder’s perspectives on the ethical and cultural issues around genetic research in American Indian communities. Her research interests include informed consent in biobank research, participants’ perspectives on data sharing, and issues with privacy and confidentiality. She is from the Navajo Nation.


Vivette García-Deister

Vivette García-Deister, PhD (Associate Professor, School of Sciences, National Autonomous University of Mexico – UNAM, Mexico City)

Vivette García-Deister specializes in the history, philosophy, and social studies of recent and contemporary biology. Her research focuses on the epistemologies of biomedical and forensic genetics in Mexico as informed by historical research, ethnographic methods, and critical anthropology of science. She is involved in national and international research efforts spanning the history of race science, the bioethics of genetic databases, and the philosophy of science in practice. She has recently contributed to Genomic Research, Publics and Experts in Latin America: Nation, Race and Body (Special issue of Social Studies of Science, edited by Peter Wade et al, December 2015), and to Mestizo Genomics: Race Mixture, Nation, and Science in Latin America, edited by Peter Wade et al (Duke University Press, 2014). She currently leads two projects: Populations of cognition: interconnected histories of science in Latin America; and together with Lindsay Smith (UNM), Migrant DNA: the science of disappearance and death across the Mexican borderlands.


Emily Vasquez

Emily E. Vasquez (Graduate Student, Department of Sociomedical Sciences, Columbia University and National Autonomous University of Mexico – UNAM, Mexico City)

Emily Vasquez is a sociologist researching the social and ethical dimensions of the introduction of genomic technologies into clinical settings in Mexico. She is interested in how biomedical science and its applications may shape the social world, including a broader politics of care, approaches to the fundamental causes of disease, and racial formation. She previously earned an MPH at Columbia University and is currently an Allan Rosenfield doctoral fellow in the department of Sociomedical Sciences and Sociology at Columbia University and an affiliate of the Science & Technology Studies (S&TS) Laboratory in the Facultad de Ciencias of the National Autonomous University of Mexico.

 

 


Mildred Cho

Mildred Cho (Professor of Pediatrics, Associate Director, Center of Biomedical Ethics at Stanford University School of Medicine)

Mildred Cho is a Professor in the Division of Medical Genetics of the Department of Pediatrics and in the Division of General Medical Disciplines in the Department of Medicine at Stanford University.  She is also Associate Director of the Stanford Center for Biomedical Ethics and Director of the Center for Integration of Research on Genetics and Ethics (an NIH-supported Center for Excellence in Ethical, Legal and Social Implications Research).  She received her B.S. in Biology in 1984 from the Massachusetts Institute of Technology and her Ph.D. in 1992 from the Stanford University Department of Pharmacology.  Her post-doctoral training was in Health Policy as a Pew Fellow at the Institute for Health Policy Studies at the University of California, San Francisco and at the Palo Alto VA Center for Health Care Evaluation.  She is a member of international and national advisory boards, including for Genome Canada, the National Institutes of Health Clinical Sequencing Exploratory Research Program, the NIH Recombinant DNA Advisory Committee, and the Board of Reviewing Editors of Science magazine.

Dr. Cho’s major areas of interest are the ethical and social impacts of genetic research and its applications, ethical issues raised by learning health care systems, and how conflicts of interest affect the conduct of academic biomedical research.  Her current research projects examine ethical and social issues in research on the human genome and microbiome, synthetic biology and genome editing, and the ethics at the intersection of clinical practice and research.  In addition, she established the Benchside Ethics Consultation Service at Stanford University in 2005 and is chair of a working group to develop a national collaborative research ethics consultation service.


Barbara Koenig

Dialogue ModeratorBarbara Koenig (Professor, Social & Behavioral Sciences, Institute for Health & Aging, Anthropology, History & Social Medicine, UCSF; Director, UCSF Bioethics; PI, Center for Transdisciplinary ELSI (Ethical, Legal and Social Implications) in Translational Genomics, UC San Francisco)


Barbara Koenig is a medical anthropologist who works in biomedical ethics with a focus on emerging genetic/genomic technologies. Throughout her career, she has pioneered bioethics research that uses empirical data to inform policy analysis and clinical practice. Previously, she directed two biomedical ethics centers (at Stanford University School of Medicine and the Mayo Clinic in Rochester, MN). Currently she is a UCSF faculty member and Joint PI of an NIH-funded P20 “Center of Excellence” in ethical, legal, and social implications (ELSI) research that focuses on the translation of genomic technologies into clinical and public health practice. Koenig, alongside Sandra Soo-Jin Lee and Sarah S. Richardson edited the book Revisiting Race in a Genomic Age.


  Dialogue 4 – Precision Medicine: Interrogating the Promise


Atul Butte

Atul Butte (MD/PhD. Director, Institute for Computational Health Sciences, UC San Francisco)

UC San Francisco has recruited a world-renowned expert in medical technology, Atul Butte, MD, PhD, to lead the new Institute for Computational Health Sciences, which serves as a cornerstone of the university’s efforts to harness the power of “big data,” to lead to faster and more effective cures for patients worldwide. A noted expert in pediatrics and medical informatics at Stanford University, Butte brings the rare combination of deep knowledge in medicine and biomedical research, and technological fluency to lead in the new realm of computational health. Butte also serves as the principal investigator for the California Initiative to Advance Precision Medicine, the Governor’s effort to promote precision medicine in the State of California.

 

 


Dr. Peter Yu

Peter Yu (Immediate-Past President of the American Society of Clinical Oncology (ASCO), Director of Cancer Research, Palo Alto Medical Foundation)

Dr. Yu is a medical oncologist and hematologist. He is Director of Cancer Research at Palo Alto Medical Foundation and in June 2016 will assume the positions of Head of Health Informatics for the MSK Cancer Alliance at Memorial Sloan Kettering Cancer Center and Physician-in-Chief Hartford HealthCare Cancer Institute. Dr. Yu is Immediate Past-President of the American Society of Clinical Oncology (ASCO)

At ASCO Dr. Yu has served on the Quality of Care Committee, Strategic Planning Committee, Integrated Media and Technology Committee, Board of Directors, and Cancer Research Committee, among others. He has served as Chair of the Health Information Technology Workgroup, Clinical Practice Committee and as President of the Association of Northern California Oncologists (an ASCO State/Regional Affiliate society). He was Co-Chair of the ASCO-National Cancer Institute Clinical Oncology Requirements for the Electronic Health Records Committee and is a member of the Epic Oncology Steering Committee.


Ida SimIda Sim (Professor, UC San Francisco School of Medicine, Co-Director Biomedical Informatics at UCSF’s Clinical and Translational Sciences Institute)

Ida Sim, MD, PhD is a primary care physician, informatics researcher, and entrepreneur. She is a Professor of Medicine at the University of California, San Francisco, where she co-directs Biomedical Informatics at UCSF’s Clinical and Translational Sciences Institute. Her current research focuses on the use of mobile apps and sensors to improve health and manage disease for populations and individuals, and to make clinical research faster and less expensive. She is a co-founder of Open mHealth, a non-profit organization that is breaking down barriers to mobile health app and data integration through an open software architecture. Dr. Sim is also a co-investigator and Consortium Core Lead with the Mobile Data to Knowledge NIH Center of Excellence.

 


David Haussler

David Haussler (Director, Genomics Institute, UC Santa Cruz)

A distinguished professor of Biomolecular Engineering, David Haussler has led UC Santa Cruz to global prominence in genomics. As a collaborator on the international Human Genome Project, his team posted the first assembly of the human genome sequence on the Internet on July 7, 2000. His team subsequently developed the UCSC Genome Browser, a web-based tool that is used extensively in biomedical research. In 2012, the National Cancer Institute selected UCSC to house the data for its genomic programs. Haussler co-founded the Genome 10K project so science can learn from other vertebrate genomes, co-founded the Treehouse Childhood Cancer Initiative to enable international comparison of childhood cancer genomes, and co-founded the Global Alliance for Genomics and Health (GA4GH), a coalition of the top research, health care, and disease advocacy organizations that have taken the first steps to standardize and enable secure sharing of genomic and clinical data.

 


Julie Harris

Dialogue Moderator: Julie Harris-Wai, (Assistant Professor, UC San Francisco; Associate Director, Center for Transdisciplinary ELSI Research in Translational Genomics | CT2G)

Julie N. Harris-Wai, PhD, MPH, is an Assistant Professor of Social and Behavioral Sciences and a staff scientist at the Kaiser Permanente Northern California Division of Research.

Dr. Harris-Wai’s research focuses on examining the social and ethical factors influencing how and why genomic technologies are translated from the research setting into clinical care and the impact these technologies have on health disparities and underserved communities. The goal of her work is to identify methods for incorporating community and stakeholder perspectives into policy decision-making to improve the appropriate translation of research into clinical and public health programs.  She is currently working on a project with the California Department of Public Health using deliberative community engagement methods to inform policy decisions about the future of California’s Newborn Screening and Biobanking Program.


Part Two: Creating the Science and Justice Agenda in an Age of Open Data and Precision Medicine


Charis ThompsonCharis Thompson (Chancellor’s Professor and Chair of Gender & Women’s Studies; Director, Chau Hoi Shuen Program in Gender & Science, UC Berkeley)

Charis Thompson is Chancellor’s Professor and Chair of Gender & Women’s Studies, and a former founding director of the Science, Technology, and Society Center at UC Berkeley. She read Philosophy, Psychology, and Physiology at Oxford University, and got her Ph.D. from the Science Studies program at UC San Diego. Before coming to Berkeley, she taught in the Science and Technology Studies Department at Cornell University, at the University of Illinois at Urbana-Champaign, and in the History of Science Department at Harvard University. She is the author of Making Parents: The Ontological Choreography of Reproductive Technologies (MIT Press, 2005), which won the 2007 Rachel Carson Award from the Society for the Social Study of Science, and of Good Science: The Ethical Choreography of Stem Cell Research (MIT Press, 2013). She is a recipient of the Social Science Division Distinguished Teaching Award.

 


Break-out Leaders

Katherine DarlingKatherine Weatherford Darling (PhD Candidate, Sociology, UCSF)

Katherine Weatherford Darling is a sociologist working across the boundaries of the sociology of health, illness and disability, and feminist science studies. Kate is currently a Doctoral Candidate at UCSF and a Visiting Scholar at the Science and Justice Research Center at UCSC. Kate cares about bringing social justice and health inequalities to the center of discussions about the ethics and politics of biomedicine. Her research examines how chronic illness and complex disease are transformed by biomedical science and health policy in the U.S. In her dissertation, she asks what it means for HIV to be defined, managed and experienced as a chronic illness in U.S. healthcare and policy. She ethnographically traces how people living with HIV and their healthcare providers are navigating biomedical bureaucracies, grappling with new insurance markets and attempting to control healthcare costs. Adele Clarke, Janet Shim and Jenny Reardon serve on her dissertation committee. Kate began her training in Environmental Health Sciences at UC Berkeley and the Columbia Center for Children’s Environmental Health. She has collaborated on research projects at UCSF and the Stanford Center for Biomedical Ethics. Through these collaborations, she has examined concepts of race/ethnicity in gene-environment interaction research, the history of race in genetics after World War II, and new frameworks for examining implicated values in biomedical research.


Ugo Edu

Ugo Edu (Health Equity Institute, San Francisco State University)

Ugo Edu joined the HEI team in August 2015 as the Science, Justice, and Health Equity Post-Doctoral Fellow. Ugo is a Medical Anthropologist who recently finished her PhD at UC San Francisco/UC Berkeley (September 2015). She has a Master of Public Health (MPH) from the Morehouse School of Medicine (2007) and a Bachelor of Science (BS) in Physiological Sciences from UCLA (2003). Edu is interested in interdisciplinary approaches to reproductive and sexual health, race, aesthetics, reproductive technologies, and social justice with an emphasis on Women, Gender, and Sexuality.


Martha Kenney

Martha Kenney (Assistant Professor, Women and Gender Studies, San Francisco State University)

Martha Kenney (PhD, History of Consciousness, UC Santa Cruz) is a feminist science studies scholar whose research investigates 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 relationships between bodies and environments. She has recent and forthcoming articles in Social Studies of Science, Science as Culture, BioSocieties, and Catalyst: Feminism, Theory, Technoscience.


Jacob Metcalf

Jacob Metcalf (Researcher, Data & Society Research Institute)

Jacob Metcalf (PhD, Philosophy, University of California, Santa Cruz) is an independent scholar and consultant in the fields of science and technology ethics. His current work focusses on ethics and policy issues in big data research and business practices. As the postdoctoral fellow for the NSF-supported Council for Big Data, Ethics and Society (housed at the Data & Society Research Institute in NYC) he leads discussion and research into the emerging field of data ethics. As a founding partner at his technology ethics consulting firm, Ethical Resolve, he helps clients develop processes for consistent, actionable ethical decision making about product, clients and investors. His most recent publication is “Where are human subjects in big data research? The emerging ethics divide,” co-authored with Kate Crawford, is in the May, 2016 issue of Big Data & Society. He was formerly the Assistant Director of the Science & Justice Research Center at UCSC.

 


Sonia Rab Alam

Sonia Rab Alam (PhD Candidate, Sociology, UCSF)

Sonia Rab Alam is a Doctoral Candidate in Sociology at UCSF. She is interested in the changing nature of health information in the era of Big Data and consumer health and wellness technologies as well as the social, economic, and digital infrastructures that make these technologies possible. Her research examines constructions of value in [and] the biomedical futures of consumer-facing health and wellness technologies, such as Fitbit activity trackers and the Apple watch. Drawing on ethnographic fieldwork at investor pitch events, digital health entrepreneur “meet ups,” and consumer technology conferences as well as interviews with venture capitalists and founders, data scientists, and marketers at health and wellness technology startups, she explores the kinds of value and futures imagined in and made possible by consumer health and wellness technologies and considers their implications. By exploring questions of value, she aims to situate the production of consumer (health) information within practices of valuation in contemporary neoliberal markets. Her work explores the complex relations among information technology, technoscience, biomedicine, and capital markets as well as the subjects and subjectivities both produced and required therefrom. Janet Shim chairs her dissertation committee, and Rina Bliss and Linda Hogle are members. Sonia holds a BA in Sociology and Gender & Women’s Studies from Bowdoin College and an MPH from the Department of Sociomedical Sciences at Columbia University.


Jenny Reardon

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

Jenny Reardon is Professor of Sociology and Faculty Affiliate in the Center for Biomolecular Science and Engineering at UC Santa Cruz. She founded and directs the Science and Justice Research Center at UCSC. She is the author of Race to the Finish: Identity and Governance in an Age of Genomics (Princeton University Press, 2005) and has finished her second manuscript, The Postgenomic Condition: Ethics, Justice, Knowledge After the Genome (University of Chicago, Forthcoming).