May 16 | Assembling Precision Medicine

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

 

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

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

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

References

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

Developing: Debate on ‘Race’ and Genomics

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

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

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

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

 

Resources (updated regularly):

Op-Ed and Initial Response:

Reich’s Op-Ed:

 

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

 

Responses in the Popular Press:

United States:

Germany:

Switzerland:

Austria:

United Kingdom:

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

Genomics and Society Graduate Research Fellowship

UC Santa Cruz’s Sociology Department is pleased to announce a new graduate research Fellowship in Genomics and Society. Offered by the Sociology Department, the Science and Justice Research Center and the Genomics Institute with funding from the National Human Genome Research Institute, the GSGRF funds students interested in research at the interface of genomics and society. Today, genome scientists and social scientists at UCSC work together to create a scientifically and socially robust form of genomics that is responsive to the widest range of lives. The fellowship supports research in this unique interdisciplinary environment.

The fellowship includes a graduate student fellowship stipend at a graduate student researcher rate plus a research allowance of $800 per year to cover supplies and travel to one relevant academic meeting or research site. The fellowship is guaranteed for the first year, and it may or may not be renewed for subsequent years.

Eligibility: To qualify for this fellowship, you must be an applicant to the UC Santa Cruz Sociology Department (deadline: December 10), and a US citizen or permanent resident. We especially encourage members of the following underrepresented groups to apply: African American, Native Pacific Islander, Native American/Alaskan, Hispanic, Latina/o, and Chicana/o.

Selection criteria: The Genomics Institute in consultation with the Sociology Department will select fellows based on responsiveness to the goals of the RMI program, the academic record of the applicant, and the potential impact of the students’ research our understanding of the relations between genomics and society. (For more information on the RMI program see http://cbse.soe.ucsc.edu/diversity/rmi)

Application process: Students will be nominated for the fellowship through their Sociology application. Students have the option of discussing their proposed area of research in genomics and society in the Personal Statement.

For more information about the Fellowship program, please contact the RMI fellowship director, Zia Isola (email: zisola@ucsc.edu; phone: 831-459-1702).