Degeneracy is a poorly understood process, essential to natural selection. In the 18th and 19th centuries, the concept of degeneracy was commandeered by the colonial imagination. A rigid understanding of species, race, and culture grew to dominate the normative thinking that persisted well into the burgeoning new industrial age. A 20th-century reconfiguration of the concept by George Gamow highlighted a form of intraorganismic variation that is still underexplored. Degeneracy exists in a population of variants where structurally different components perform a (...) similar, but not necessarily identical, function with respect to context. The presence of degeneracy increases a system’s complexity and robustness against perturbations. The loss of a genetic component in biological systems, for example, can be compensated by redundant elements , or by degenerate elements . A historical survey of the use of the term “degeneracy” reveals how and why the processes it once designated, and the mechanisms it now represents, have largely escaped the purview of contemporary science. Despite confusion and general oversight, degeneracy has been characterized by select researchers at the molecular, genetic, and neuronal levels. The concept is a potent analytical tool to understand selection, variation, and transmission. (shrink)

Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...) and data analysis techniques. While such advances will likely go some way towards resolving technical and methodological issues, we believe that the epistemological issues raised by big data research have important ethical implications and raise questions about the very possibility of big data research achieving its goals. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

In this Symposium on the Ethics and Epistemology of Big Data, we present four perspectives on the ways in which the rapid growth in size of research databanks—i.e. their shift into the realm of “big data”—has changed their moral, socio-political, and epistemic status. While there is clearly something different about “big data” databanks, we encourage readers to place the arguments presented in this Symposium in the context of longstanding debates about the ethics, politics, and epistemology of biobank, database, genetic, and (...) epidemiological research. (shrink)

The case outlined below is the basis for the In That Case section of the “Ethics and Epistemology of Big Data” symposium. Jordan receives reports from two separate personal genomic tests that provide intriguing data about ancestry and worrying but ambiguous data about the potential risk of developing Alzheimer’s disease. What began as a personal curiosity about genetic inheritance turns into an alarming situation of medical uncertainty. Questions about Jordan’s family tree are overshadowed by even more questions about Alzheimer’s disease (...) and healthy ageing. As a parent, Jordan is unsure whether to share these results and what it would mean for their children to learn about their genetic inheritance and potential future health. Furthermore, Jordan is unsure how to make sense of these reports in light of current knowledge of the risk factors for Alzheimer’s disease and in the absence of effective treatments or robust preventative guidelines. (shrink)

With attention to the experiences, agency, and rights of tuberculosis patients, this symposium on TB and ethics brings together a range of different voices from the social sciences and humanities. To develop fresh insights and new approaches to TB care and prevention, it is important to incorporate diverse perspectives from outside the strictly biomedical model. In the articles presented in this issue of the Journal of Bioethical Inquiry, clinical experience is married with historical and cultural context, ethical concerns are brought (...) to bear on global health, and structural analyses shed light upon the lived experience of people living with TB. The relational and reciprocal dimensions of care feature strongly in these discussions, which serve as a poignant reminder that behind each of the yearly deaths from TB is a deeply personal story. No single discipline holds a monopoly on how to care for each of these people, but strong cases are made for support from mental health and social workers in addressing the kaleidoscope of needs in TB prevention. As the World Health Organization moves towards the goal of eliminating TB globally by 2050, attending to the needs of TB patients serves global interests to lower disease burden and to develop better integrated communities worldwide. (shrink)

If James has a latent tuberculosis infection , he is at risk of developing active tuberculosis disease but he is not yet sick. LTBI is a liminal space between health and illness. Diagnosed with LTBI, James could be conceptualised as having a liminal body. Treatments for LTBI are available, but why would a person seek treatment for a disease he does not yet have? One thing is definite: James needs to be educated about the symptoms and severity of active tuberculosis (...) disease. (shrink)

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought (...) together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)

The availability of diverse sources of data related to health and illness from various types of modern communication technology presents the possibility of augmenting medical knowledge, clinical care, and the patient experience. New forms of data collection and analysis will undoubtedly transform epidemiology, public health, and clinical practice, but what ethical considerations come in to play? With a view to analysing the ethical and regulatory dimensions of burgeoning forms of biomedical big data, Brent Daniel Mittelstadt and Luciano Floridi have brought (...) together thirty scholars in an edited volume that forms part of Springer’s Law, Governance and Technology book series in a collection titled The Ethics of Biomedical Big Data. With eighteen chapters partitioned into six carefully devised sections, this volume engages with core theoretical, ethical, and regulatory challenges posed by biomedical big data. (shrink)