scholarly journals The Ethics of Translational Science: Imagining Public Benefit in Gene-Environment Interaction Research

2017 ◽  
Vol 3 ◽  
pp. 351 ◽  
Author(s):  
Sara L. Ackerman ◽  
Katherine Weatherford Darling ◽  
Sandra Soo-Jin Lee ◽  
Robert A. Hiatt ◽  
Janet K. Shim

Biomedical research is increasingly informed by expectations of “translation,” which call for the production of scientific knowledge that can be used to create services and products that improve health outcomes. In this paper, we ask how translation, in particular the idea of social responsibility, is understood and enacted in the post-genomic life sciences. Drawing on theories examining what constitutes “good science,” and interviews with 35 investigators who study the role of gene-environment interactions in the etiology of cancer, diabetes, and cardiovascular disease, we describe the dynamic and unsettled ethics of translational science through which the expected social value of scientific knowledge about complex disease causation is negotiated. To describe how this ethics is formed, we first discuss the politics of knowledge production in interdisciplinary research collectives. Researchers described a commitment to working across disciplines to examine a wide range of possible causes of disease, but they also pointed to persistent disciplinary and ontological divisions that rest on the dominance of molecular conceptions of disease risk. The privileging of molecular-level causation shapes and constrains the kinds of knowledge that can be created about gene-environment interactions. We then turn to scientists’ ideas about how this knowledge should be used, including personalized prevention strategies, targeted therapeutics, and public policy interventions. Consensus about the relative value of these anticipated translations was elusive, and many scientists agreed that gene-environment interaction research is part of a shift in biomedical research away from considering important social, economic, political and historical causes of disease and disease disparities. We conclude by urging more explicit engagement with questions about the ethics of translational science in the post-genomic life sciences. This would include a consideration of who will benefit from emerging scientific knowledge, how benefits will accrue, and the ways in which normative assumptions about the public good come to be embedded in scientific objects and procedures.

Author(s):  
David M. Wineroither ◽  
Rudolf Metz

AbstractThis report surveys four approaches that are pivotal to the study of preference formation: (a) the range, validity, and theoretical foundations of explanations of political preferences at the individual and mass levels, (b) the exploration of key objects of preference formation attached to the democratic political process (i.e., voting in competitive elections), (c) the top-down vs. bottom-up character of preference formation as addressed in leader–follower studies, and (d) gene–environment interaction and the explanatory weight of genetic predisposition against the cumulative weight of social experiences.In recent years, our understanding of sites and processes of (individual) political-preference formation has substantially improved. First, this applies to a greater variety of objects that provide fresh insight into the functioning and stability of contemporary democracy. Second, we observe the reaffirmation of pivotal theories and key concepts in adapted form against widespread challenge. This applies to the role played by social stratification, group awareness, and individual-level economic considerations. Most of these findings converge in recognising economics-based explanations. Third, research into gene–environment interplay rapidly increases the number of testable hypotheses and promises to benefit a wide range of approaches already taken and advanced in the study of political-preference formation.


2016 ◽  
Vol 2 ◽  
pp. 322 ◽  
Author(s):  
Sainath Suryanarayanan

In this essay, I argue for an epistemology of complexity that is centered on intra-acting—always already interacting and becoming—bodies. I utilize analyses of the politics of knowledge concerning honey bee declines and gene-environment interaction research to outline a feminist-oriented epistemology in terms of multisensorial corporealities that I call “intractosoma.” I argue that re-organizing the production of observation, reduction, and difference along the lines of an intractosomal epistemology of complexity would lead to a more accurate understanding of complex phenomena, and entail a different politics in which the constructed distance between observers and observed can no longer absolve observers of “response-ability.” By shifting the locus of concern to always already enmeshed bodies, I seek to open analyses to a plurality of observers with their associated blind-spots and power dynamics, and a multiplicity of forms of knowing and becoming, beyond instrumentation, computation and quantification..


2016 ◽  
Vol 155 ◽  
pp. 51-60 ◽  
Author(s):  
Katherine Weatherford Darling ◽  
Sara L. Ackerman ◽  
Robert H. Hiatt ◽  
Sandra Soo-Jin Lee ◽  
Janet K. Shim

2015 ◽  
Vol 10 (1) ◽  
pp. 37-59 ◽  
Author(s):  
Danielle M. Dick ◽  
Arpana Agrawal ◽  
Matthew C. Keller ◽  
Amy Adkins ◽  
Fazil Aliev ◽  
...  

2012 ◽  
Vol 50 (5) ◽  
pp. 415-425
Author(s):  
Michael E. May ◽  
Rachel C. Brandt ◽  
Joseph K. Bohannan

Abstract Advances in gene–environment interaction research have revealed genes that are associated with aggression. However, little is known about parent perceptions of genetic screening for behavioral symptoms like aggression as opposed to diagnosing disabilities. These perceptions may influence future research endeavors involving genetic linkage studies to behavior, including proactive approaches for parents to avoid events leading to aggression. The purpose of this study was to solicit the perspectives of parents who have children with autism about screening for genes associated with aggression, compared to responses from those who have children without disabilities and those planning to have children. Parents of children with autism were more likely to support screening and the use of the results to seek treatment if necessary. Results are discussed in the context of surveillance screening and systematic early intervention for behavioral symptoms related to autism. The results may provide insight for clincians, researchers, policymakers, and advocacy groups related to diagnosing and treating aggression in people with autism.


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