Showing papers in "New Genetics and Society in 2018"
TL;DR: This chapter discusses Solidarity in Biomedicine and Beyond, which focuses on the work of Jill Quadagno, who wrote The Color of Welfare: How Racism Undermined the War on Poverty.
Abstract: Bioethics. London: Nuffield Council on Bioethics. Prainsack, Barbara, and Alena Buyx. 2017. Solidarity in Biomedicine and Beyond. Cambridge: Cambridge University Press. Quadagno, Jill S. 1994. The Color of Welfare: How Racism Undermined the War on Poverty. New York: Oxford University Press. Quadagno, Jill S. 2005. One Nation, Uninsured: Why the U.S. Has No National Health Insurance. New York: Oxford University Press. Quesada, James, Laurie Kain Hart, and Philippe Bourgois. 2011. “Structural Vulnerability and Health: Latino Migrant Laborers in the United States.” Medical Anthropology 30 (4): 339–362. https:// doi.org/10.1080/01459740.2011.576725. Rorty, Richard. 1989. Contingency, Irony and Solidarity. Cambridge: Cambridge University Press. Shim, Janet K. 2014. Heart-Sick: The Politics of Risk, Inequality, and Heart Disease. New York: New York University Press. Shostak, Sara. 2013. Exposed Science: Genes, the Environment, and the Politics of Population Health. Durham, NC: Duke University Press. Sins Invalid. 2016. Skin, Tooth and Bone: The Basis of Movement Is Our People a Disability Justice Primer. Sins Invalid. www.sinsinvalid.org. Strathern, Marilyn. 1988. The Gender of the Gift: Problems with Women and Problems with Society in Melanesia. Berkeley: University of California Press. Torres, Jacqueline M., John Lawlor, Jeffrey D. Colvin, Marion R. Sills, Jessica L. Bettenhausen, Amber Davidson, Gretchen J. Cutler, Matt Hall, and Laura M. Gottlieb. 2017. “ICD Social Codes: An Underutilized Resource for Tracking Social Needs.” Medical Care 55 (9). https:// journals.lww.com/lww-medicalcare/Fulltext/2017/09000/ICD_Social_Codes__An_ Underutilized_Resource_for.2.aspx. Willse, Craig. 2015. The Value of Homelessness: Managing Surplus Life in the United States. Minneapolis, Minnesota: University of Minnesota Press.
51 citations
TL;DR: How the recent massive injection of molecular biology and high-throughput genomic technologies in the field of oncology has been accompanied by a reshuffling of the research/care distinction is examined, a process that is leading to new forms of “experimental care”.
Abstract: Historians and social scientists view the distinction between research and care as diachronically and synchronically contingent, rather than transcendental, as is often the case in bioethics. Comparing how the notion of total care was used in the 1950s with present-day use of that same term by genomically informed oncology programs, the paper argues that the distinction between research and care needs: to be historicized, by examining its repeated emergence and re-definition, and the shifting relations between these two “ideal-typical” components; and to be problematized, by paying attention to the entities, practices, and institutions that are constitutive of the successive regimens that have punctuated oncology’s development. Shifting to contemporary activities, the paper examines how the recent massive injection of molecular biology and high-throughput genomic technologies in the field of oncology has been accompanied by a reshuffling of the research/care distinction, a process that is leading to new f...
36 citations
TL;DR: In this paper, forensic geneticists have attempted to make the case for continued investment in forensic genetics research, despite its seemingly consolidated evidentiary role in criminal justice, by shifting the...
Abstract: Forensic geneticists have attempted to make the case for continued investment in forensic genetics research, despite its seemingly consolidated evidentiary role in criminal justice, by shifting the...
27 citations
TL;DR: Based on twenty-seven months of ethnographic research within a Christian embryo adoption program and an embryo biobank for stem cell research, this article examines the motivations and practices involved in transforming leftover IVF embryos from a remaindered to a repurposed state.
Abstract: The million frozen human embryos accumulated in IVF clinic freezers across the United States have become premier targets for saving by groups committed to repurposing reproductive remainders. Based...
27 citations
TL;DR: Overwhelmingly, participants reported a curious combination of anticipation and satisfaction yet no discernable impact on their sense of self or racial identity, and the effects and non-effects of GAT for the women in this study are detailed.
Abstract: Since the completion of the Human Genome Project, there have been pitched debates about its implications and the research it enables. One prominent thread of concern focuses on the role of post-gen...
23 citations
TL;DR: In this article, the authors discuss how decisions, actions, feelings and similarities bind us together and how feelings of political community are transformed into the political action of individuals and collectives.
Abstract: What decisions, actions, feelings and similarities bind us together? How are “feelings of political community” transformed into the political action of individuals and collectives? (Prainsack and B...
21 citations
TL;DR: Qualitative research regarding professionals’ and personally affected people’s views on the utility of genomic information finds that the discussion of clinical utility is the domain of professionals who primarily consider aspects of test validity and clinical outcomes, and personal utility plays a prominent role in affected persons’ discussions.
Abstract: In the evaluation of genomic high-throughput technologies, the idea of “utility” plays an important role. The “clinical utility” of genomic data refers to the improvement of healthcare outcomes, it...
16 citations
TL;DR: In this excellent new contribution, James Mittra provides a detailed description of the contemporary terrain of biomedical innovation with reference to examples from regenerative medicine, stratif...
Abstract: In this excellent new contribution, James Mittra provides a detailed description of the contemporary terrain of biomedical innovation. With reference to examples from regenerative medicine, stratif...
13 citations
TL;DR: It is suggested that biobanks passage cells from in vitro fertilization to stem cell science and from country to country by modifying their reproductive meaning.
Abstract: The first French clinical trial using human embryonic stem cells for regenerative purposes was launched in 2014, using the I6 stem cell line that was imported from Israel. From Israel to France, na...
12 citations
TL;DR: In this paper, the authors examine how the main governance actors realized their responsibility in the sense of conceiving and performing it, based on the pragmatic sociology of critique, and show that critical interventions disrupted institutional routines and caused governance actors to struggle with conflicting commitments of complying with institutional rules and taking social and ethical considerations into account.
Abstract: NIPT has become a matter of controversy in Germany over the past years, there is now a widespread concern that it raises fundamental social and ethical questions Starting from the assumption that responsible governance requires governance actors to address these questions, the article examines how the main governance actors realized their responsibility in the sense of conceiving and performing it Building on the pragmatic sociology of critique, we study how actors are doing responsibility within a given institutional and political context We show that critical interventions disrupted institutional routines and caused governance actors to struggle with conflicting commitments of complying with institutional rules and exercising responsibility by taking social and ethical considerations into account Whereas these conflicting commitments posed a predicament for political decision-makers, who solved it through shifting responsibility for social and ethical issues elsewhere, there was no such predicament
11 citations
TL;DR: This article shows how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries and reflects on the implications of the analysis for understanding experiences of genetic cancer risk.
Abstract: Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically “at risk” are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing on online bloggers’ accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk.
TL;DR: Patent systems have been a significant domain in which controversies over socioeconomic and moral implications of novel biotechnologies have played out as mentioned in this paper, and patent politics uses comparative analysis of patent politics.
Abstract: Patent systems have been a significant domain in which controversies over socioeconomic and moral implications of novel biotechnologies have played out. Patent Politics uses comparative analysis of...
TL;DR: In this article, the authors focus on patterns of communication and interaction for peer support, which develop among parents of screen-positive children in the socio-medical space created by the diagnostic uncertification.
Abstract: This study focuses on patterns of communication and interaction for peer support, which develop among parents of screen-positive children in the socio-medical space created by the diagnostic uncert...
TL;DR: In this paper, the authors combine Bourdieu's Field Theory with the concept of doability to investigate an interdisciplinary scientific project, namely biosocial criminology, which they call Bio-Criminology.
Abstract: This paper combines Bourdieu’s Field Theory with the concept of “doability” to investigate an interdisciplinary scientific project, namely biosocial criminology. Biosocial criminologists seek to in...
TL;DR: It is demonstrated how “sold blood” collected by commercial blood banks became the quintessence of “bad blood’ in the process of this transition to the centralized donation-based Red Cross system in 1990.
Abstract: Tracing the controversies surrounding commercial blood procurement in Japan, this article inquires into the reconfiguration of social boundaries, bodies, and substances through blood banks. In Japa...
TL;DR: Many "rising powers" such as India, China, Argentina, Singapore, and Brazil are investing in stem cell technology, joining the traditional leaders in the field, such as the UK, Germany, USA, and India as mentioned in this paper.
Abstract: Many “rising powers” such as India, China, Argentina, Singapore, and Brazil are investing in stem cell technology, joining the traditional leaders in the field, such as the UK, Germany, USA, and Ja...
TL;DR: Biobanks connected to In Vitro Fertilization hospitals do not merely function as repositories for biologicals but also contribute to the restoration of reproductive substances to distinct social environments, as well as to the infringement of social boundaries.
Abstract: Biobanks connected to In Vitro Fertilization hospitals do not merely function as repositories for biologicals. They also contribute to the restoration of reproductive substances to distinct social ...
TL;DR: This special issue explores the role of biobanks in the reconfigurations of the living, as they constitute a central place in the manufacture of biological resources.
Abstract: While previous discussions of biobanks have addressed standardization and innovations, law and ethics, governance, donation, citizenship, race, data and economy (Cromer 2017; Ehrich, Williams, and ...
TL;DR: In this paper, the authors explored what the "duty to recontact" means for healthcare professionals involved in genetics, using interviews with 34 professionals working in, or closely with, genetics services.
Abstract: Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations.
TL;DR: In this paper, the authors highlight growing debates about payment for regenerative medicine in the UK, setting this alongside escalating policy debates about "value" and draw on interviews and publicly available material to identify the interacting and conflicting positions of institutional stakeholders.
Abstract: The field of regenerative medicine (RM) faces many challenges, including funding Framing the analysis in terms of institutional politics, valuation studies and “technologies of knowledge”, the paper highlights growing debates about payment for RM in the UK, setting this alongside escalating policy debates about “value” We draw on interviews and publicly available material to identify the interacting and conflicting positions of institutional stakeholders It is concluded that while there is some common ground between institutional stakeholders such as industry and health system gatekeepers, there is significant conflict about reward systems, technology assessment methodologies and payment scenarios; a range of mostly conditional payment schemes and non-mainstream routes are being experimented with We argue that current developments highlight a fundamental conflict between a concern for the societal value of medical technologies in a resource-limited system and a concern for engineering new reward and p
TL;DR: Clinicians’ views and expectations of microbiome science in asthma care are examined and it is suggested that clinicians drew on scientific discourses of “evidence” and “facts” as a form of boundary work to re-establish a separation between western biomedicine and alternative health practitioners, and clinical expertise and lay knowledge.
Abstract: Human microbiome science examines the microbiota that live in and on the human body and their role in human health. This paper examines clinicians’ views and expectations of microbiome science in a...
TL;DR: In this article, the anthropologist Daisy Deomampo delineates with great details how race and kinship are intertwined in commercial surrogacy in India, and how kinship and race are interlinked in this reproductive practice.
Abstract: Throughout an ethnography dedicated to commercial surrogacy in India, the anthropologist Daisy Deomampo delineates with great details how race and kinship are intertwined in this reproductive pract
TL;DR: Based on a collaboration between a sociologist and a geneticist, the authors aims to document the banking practices in the world of finance, where conservation management of living beings is not only an issue in medicine.
Abstract: The conservation-management of living beings is not only an issue in medicine. Based on a collaboration between a sociologist and a geneticist, this paper aims to document the banking practices in ...
TL;DR: Mattering: Feminism, Science, and Materialism (2016) is the edited volume that resulted from a conference of the same name at the City University of New York (CUNY) in 2013.
Abstract: Mattering: Feminism, Science, and Materialism (2016) is the edited volume that resulted from a conference of the same name at the City University of New York (CUNY) in 2013 (vii) The purpose of th
TL;DR: Museums have been apparatuses for articulating knowledges, power and natures into an ordered whole for centuries, practices that have extended through to contemporary museums and their genetic coll...
Abstract: Museums have been apparatuses for articulating knowledges, power and natures into an ordered whole for centuries, practices that have extended through to contemporary museums and their genetic coll...
TL;DR: Social scientific perspectives have a long history of offering unique and important insights into the social, cultural and economic features which shape understandings, meanings and practices relat... as mentioned in this paper, and they have also been used for understanding, meaning, and practices.
Abstract: Social scientific perspectives have a long history of offering unique and important insights into the social, cultural and economic features which shape understandings, meanings and practices relat...