Search results for 'Genomics' (try it on Scholar)

402 found
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  1.  11
    Alexander Powell, Maureen A. O'Malley, Staffan Mueller-Wille, Jane Calvert & John Dupré (2007). Disciplinary Baptisms: A Comparison of the Naming Stories of Genetics, Molecular Biology, Genomics and Systems Biology. History and Philosophy of the Life Sciences 29 (1):5-32.
    Understanding how scientific activities use naming stories to achieve disciplinary status is important not only for insight into the past, but for evaluating current claims that new disciplines are emerging. In order to gain a historical understanding of how new disciplines develop in relation to these baptismal narratives, we compare two recently formed disciplines, systems biology and genomics, with two earlier related life sciences, genetics and molecular biology. These four disciplines span the twentieth century, a period in which the (...)
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  2. Jordan Bartol (2013). Re-Examining the Gene in Personalized Genomics. Science and Education 22 (10):2529-2546.
    Personalized genomics companies (PG; also called ‘direct-to-consumer genetics’) are businesses marketing genetic testing to consumers over the Internet. While much has been written about these new businesses, little attention has been given to their roles in science communication. This paper provides an analysis of the gene concept presented to customers and the relation between the information given and the science behind PG. Two quite different gene concepts are present in company rhetoric, but only one features in the science. To (...)
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  3.  3
    Hub Zwart (2009). From Utopia to Science: Challenges of Personalised Genomics Information for Health Management and Health Enhancement. [REVIEW] Medicine Studies 1 (2):155-166.
    From 1900 onwards, scientists and novelists have explored the contours of a future society based on the use of “anthropotechnologies” (techniques applicable to human beings for the purpose of performance enhancement ranging from training and education to genome-based biotechnologies). Gradually but steadily, the technologies involved migrated from (science) fiction into scholarly publications, and from “utopia” (or “dystopia”) into science. Building on seminal ideas borrowed from Nietzsche, Peter Sloterdijk has outlined the challenges inherent in this development. Since time immemorial, and at (...)
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  4.  34
    Michel Morange (2006). Post-Genomics, Between Reduction and Emergence. Synthese 151 (3):355 - 360.
    It is frequently said that biology is emerging from a long phase of reductionism. It would be certainly more correct to say that biologists are abandoning a certain form of reductionism. We describe this past form, and the experiments which challenged the previous vision. To face the difficulties which were met, biologists use a series of concepts and metaphors - pleiotropy, tinkering, epigenetics - the ambiguity of which masks the difficulties, instead of solving them. In a similar way, the word (...)
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  5.  22
    Ernesto Schwartz-Marín & Irma Silva-Zolezzi (2010). “The Map of the Mexican’s Genome”: Overlapping National Identity, and Population Genomics. [REVIEW] Identity in the Information Society 3 (3):489-514.
    This paper explores the intersections between national identity and the production of medical/population genomics in Mexico. The ongoing efforts to construct a Haplotype Map of Mexican genetic diversity offers a unique opportunity to illustrate and analyze the exchange between the historic-political narratives of nationalism, and the material culture of genomic science. Haplotypes are central actants in the search for medically significant SNP’s, as well as powerful entities involved in the delimitation of ancestry, temporality and variability. By following the circulation (...)
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  6.  2
    Hub Zwart (2009). Genomics and Identity: The Bioinformatisation of Human Life. [REVIEW] Medicine, Health Care and Philosophy 12 (2):125-136.
    The genomics “revolution” is spreading. Originating in the molecular life sciences, it initially affected a number of biomedical research fields such as cancer genomics and clinical genetics. Now, however, a new “wave” of genomic bioinformation is transforming a widening array of disciplines, including those that address the social, historical and cultural dimensions of human life. Increasingly, bioinformation is affecting “human sciences” such as psychiatry, psychology, brain research, behavioural research (“behavioural genomics”), but also anthropology and archaeology (“bioarchaeology”). Thus, (...)
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  7.  5
    Jeffrey H. Barker (2003). Common-Pool Resources and Population Genomics in Iceland, Estonia, and Tonga. Medicine, Health Care and Philosophy 6 (2):133-144.
    This paper addresses the application of the ethical concept of trust and the legal and political concept of public trust to population genomics projects in Iceland, Estonia, and Tonga. Focusing on trust and public trust, the paper explores analogies between the genomics projects and the treatment of other common-pool resources, making use of the notion of trust as an ethical demand, derived from the works of Emmanuel Levinas and Knud Eljer Lgstrup. The paper discusses the degree to which (...)
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  8.  15
    Gabriele Badano (2012). Genomics and Public Involvement: Giving Justifications Their Due. Studies in Ethics, Law, and Technology 6 (1).
    The involvement of the public in the governance of genomics has become a topic of growing interest among scholars, practitioners and policy-makers. The implementation of public involvement programmes may be quite expensive, and the design and evaluation of public participation is a matter of controversy. Thus, this paper examines the justifications for public participation in the governance of genomic research to help understand whether public involvement is worthwhile and to provide a guide to the design of public participation. I (...)
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  9.  38
    Marko Barendregt & René Van Hezewijk (2005). Adaptive and Genomic Explanations of Human Behaviour: Might Evolutionary Psychology Contribute to Behavioural Genomics? [REVIEW] Biology and Philosophy 20 (1):57-78.
    . Evolutionary psychology and behavioural genomics are both approaches to explain human behaviour from a genetic point of view. Nonetheless, thus far the development of these disciplines is anything but interdependent. This paper examines the question whether evolutionary psychology can contribute to behavioural genomics. Firstly, a possible inconsistency between the two approaches is reviewed, viz. that evolutionary psychology focuses on the universal human nature and disregards the genetic variation studied by behavioural genomics. Secondly, we will discuss the (...)
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  10.  6
    Lisa Gannett (2013). Projectibility and Group Concepts in Population Genetics and Genomics. Biological Theory 7 (2):130-143.
    Although the category “race” fails as a postulated natural kind, racial, ethnic, national, linguistic, religious, and other group designations might nonetheless be considered projectible insofar as they support inductive inferences in biomedicine. This article investigates what it might mean for group concepts in population genetics and genomics to be projectible and whether the projectibility of such predicates licenses the representation of their corresponding classes as natural kinds according to currently prevailing projectibility-based accounts of natural kinds. The article draws on (...)
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  11.  2
    Megan M. Campbell, Ezra Susser, Jantina de Vries, Adam Baldinger, Goodman Sibeko, Michael M. Mndini, Sibonile G. Mqulwana, Odwa A. Ntola, Raj S. Ramesar & Dan J. Stein (2015). Exploring Researchers’ Experiences of Working with a Researcher-Driven, Population-Specific Community Advisory Board in a South African Schizophrenia Genomics Study. BMC Medical Ethics 16 (1):1-9.
    BackgroundCommunity engagement within biomedical research is broadly defined as a collaborative relationship between a research team and a group of individuals targeted for research. A Community Advisory Board is one mechanism of engaging the community. Within genomics research CABs may be particularly relevant due to the potential implications of research findings drawn from individual participants on the larger communities they represent. Within such research, CABs seek to meet instrumental goals such as protecting research participants and their community from research-related (...)
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  12.  2
    Lawrence Fagbemiro & Clement Adebamowo (2014). Knowledge and Attitudes to Personal Genomics Testing for Complex Diseases Among Nigerians. BMC Medical Ethics 15 (1):34.
    The study examined the knowledge and attitudes to personal genomics testing for complex diseases among Nigerians and identified how the knowledge and attitudes vary with gender, age, religion, education and related factors.
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  13.  1
    Jantina de Vries, Thomas N. Williams, Kalifa Bojang, Dominic P. Kwiatkowski, Raymond Fitzpatrick & Michael Parker (2014). Knowing Who to Trust: Exploring the Role of 'Ethical Metadata' in Mediating Risk of Harm in Collaborative Genomics Research in Africa. BMC Medical Ethics 15 (1):62.
    The practice of making datasets publicly available for use by the wider scientific community has become firmly integrated in genomic science. One significant gap in literature around data sharing concerns how it impacts on scientists’ ability to preserve values and ethical standards that form an essential component of scientific collaborations. We conducted a qualitative sociological study examining the potential for harm to ethnic groups, and implications of such ethical concerns for data sharing. We focused our empirical work on the MalariaGEN (...)
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  14.  25
    Hub Zwart (2009). Biotechnology and Naturalness in the Genomics Era: Plotting a Timetable for the Biotechnology Debate. [REVIEW] Journal of Agricultural and Environmental Ethics 22 (6):505-529.
    Debates on the role of biotechnology in food production are beset with notorious ambiguities. This already applies to the term “biotechnology” itself. Does it refer to the use and modification of living organisms in general, or rather to a specific set of technologies developed quite recently in the form of bioengineering and genetic modification? No less ambiguous are discussions concerning the question to what extent biotechnology must be regarded as “unnatural.” In this article it will be argued that, in order (...)
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  15.  91
    Monika Piotrowska (2009). What Does It Mean to Be 75% Pumpkin? The Units of Comparative Genomics. Philosophy of Science 76 (5):838-850.
    Comparative genomicists seem to be convinced that the unit of measurement employed in their studies is a gene that drives the function of cells and ultimately organisms. As a result, they have come to some substantive conclusions about how similar humans are to other organisms based on the percentage of genetic makeup they share. I argue that the actual unit of measurement employed in the studies corresponds to a structural rather than a functional gene concept, thus rendering many of the (...)
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  16.  1
    Dalton Conley & Dolores Malaspina (2016). Socio-Genomics and Structural Competency. Journal of Bioethical Inquiry 13 (2):193-202.
    Adverse developmental exposures and pathologies of the social environment make vastly greater contributions to the leading health burdens in society than currently known genotypic information. Yet, while patients now commonly bring information on single alleles to the attention of their healthcare team, the former conditions are only rarely considered with respect to future health outcomes. This manuscript aims to integrate social environmental influences in genetic predictive models of disease risk. Healthcare providers must be educated to better understand genetic risks for (...)
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  17. Michael Banner & Jonathan Suk (2006). Genomics in the UK: Mapping the Social Science Landscape. Genomics, Society and Policy 2:4-31.
    This paper has been prepared from the perspective of the ESRC Genomics Policy & Research Forum, which has the particular mandate of linking social science research on genomics with ongoing public and policy debates. It is intended as a contribution to discussions about the future agenda for social scientific analyses of genomics. Given its scope, this paper is necessarily painted with a broad brush. It is presented in the hope that it can serve both as a useful (...)
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  18. Maartje Schermer (2008). Genomics, Obesity and Enhancement: Moral Issues Regarding Aesthetics and Health. Genomics, Society and Policy 4:36-52.
    Human enhancement is the term used for applications of biomedical knowledge that aim to improve human form or functioning beyond what is necessary to restore or sustain good health. Genomics is one of the research-areas that promises to offer such possibilities in the near future, and body weight – especially over-weight and obesity - is one of the human characteristics at which these will be directed. This paper offers an overview of some of the moral issues that the subject (...)
     
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  19. Rasmus Grønfeldt Winther, Roberta L. Millstein & Rasmus Nielsen (2015). Introduction: Genomics and Philosophy of Race. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 52:1-4.
    This year’s topic is “Genomics and Philosophy of Race.” Different researchers might work on distinct subsets of the six thematic clusters below, which are neither mutually exclusive nor collectively exhaustive: (1) Concepts of ‘Race’; (2) Mathematical Modeling of Human History and Population Structure; (3) Data and Technologies of Human Genomics; (4) Biological Reality of Race; (5) Racialized Selves in a Global Context; (6) Pragmatic Consequences of ‘Race Talk’ among Biologists.
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  20.  6
    Sandra Soo-Jin Lee & LaVera Crawley (2009). Research 2.0: Social Networking and Direct-To-Consumer (DTC) Genomics. American Journal of Bioethics 9 (6):35-44.
    The convergence of increasingly efficient high throughput sequencing technology and ubiquitous Internet use by the public has fueled the proliferation of companies that provide personal genetic information (PGI) direct-to-consumers. Companies such as 23andme (Mountain View, CA) and Navigenics (Foster City, CA) are emblematic of a growing market for PGI that some argue represents a paradigm shift in how the public values this information and incorporates it into how they behave and plan for their futures. This new class of social networking (...)
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  21.  6
    Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker (2011). Ethical Issues in Human Genomics Research in Developing Countries. BMC Medical Ethics 12 (1):5.
    BackgroundGenome-wide association studies provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical issues (...)
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  22.  16
    Hub Zwart (2011). Towards an Eco-Centric View of Human Existence: Implications of Genomics for the Environmental Zone. Genomics, Society and Policy 6 (2):40-55.
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  23.  35
    John Dupré (2004). Understanding Contemporary Genomics. Perspectives on Science 12 (3):320-338.
    : Recent molecular biology has seen the development of genomics as a successor to traditional genetics. This paper offers an overview of the structure, epistemology, and (very briefly) history of contemporary genomics. A particular focus is on the question to what extent the genome contains, or is composed of, anything that corresponds to traditional conceptions of genes. It is concluded that the only interpretation of genes that has much contemporary scientific relevance is what is described as the "developmental (...)
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  24. Peter Derkx & Harry Kunneman (eds.) (2013). Genomics and Democracy: Towards a ‘Lingua Democratica’ for the Public Debate on Genomics. Editions Rodopi.
    This book addresses the ethical and political questions flowing from the vastly increased possibilities to manipulate the genetic properties of organisms, including human beings. Due to the great complexity of the scientific fields involved, these questions are framed and answered mostly by scientific experts. But the new technological possibilities and social practices connected with genetic manipulation intrude into domains that for a long time have been the provenance of religious and secular worldviews and touch upon deep-seated convictions and emotions. Moreover (...)
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  25.  7
    John Dupre (2004). Understanding Contemporary Genomics. Perspectives on Science 12 (3):320-338.
    Recent molecular biology has seen the development of genomics as a successor to traditional genetics. This paper offers an overview of the structure, epistemology, and history of contemporary genomics. A particular focus is on the question to what extent the genome contains, or is composed of, anything that corresponds to traditional conceptions of genes. It is concluded that the only interpretation of genes that has much contemporary scientific relevance is what is described as the "developmental defect" gene concept. (...)
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  26.  27
    Lenny Moss (2006). Redundancy, Plasticity, and Detachment: The Implications of Comparative Genomics for Evolutionary Thinking. Philosophy of Science 73 (5):930-946.
    Radically new or unexpected findings in a science demand an openness to new concepts and styles of explanation. The time is more than ripe for asking ourselves what we have learned from the research program of comparative genomics. Where not long ago the human genome was expected to reveal a close association of complexity with the quantitative expansion of the roster of unique genes, more recent findings, especially in relation to comparisons between human and chimp, have raised the bracing (...)
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  27.  9
    S. H. E. Harmon (2008). Ethical Rhetoric: Genomics and the Moral Content of UNESCO's "Universal" Declarations. Journal of Medical Ethics 34 (11):e24-e24.
    Genomic research is an expanding and subversive field, leaking into various others, from environmental protection to food production to healthcare delivery, and in doing so, it is reshaping our relationship with them. The international community has issued various declaratory instruments aimed at the human genome and genomic research. These soft law instruments stress the special nature of genomics and our genetic heritage, and attempt to set limits on our activities with respect to same, as informed by the human rights (...)
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  28.  53
    Robert Streiffer (2005). An Ethical Analysis of Ojibway Objections to Genomics and Genetics Research on Wild Rice. Philosophy in the Contemporary World 12 (2):37-45.
    I analyze Ojibway objections to genomics and genetics research on wild rice. Although key academic and industry participants in this research have dismissed their objections out of hand, my analysis supports the conclusion that the objections merit serious consideration, even by those who do not share the Ojibway’s religious beliefs.
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  29.  10
    A. W. Cappelen, O. F. Norheim & B. Tungodden (2008). Genomics and Equal Opportunity Ethics. Journal of Medical Ethics 34 (5):361-364.
    Genomics provides information on genetic susceptibility to diseases and new possibilities for interventions which can fundamentally alter the design of fair health policies. The aim of this paper is to explore implications of genomics from the perspective of equal opportunity ethics. The ideal of equal opportunity requires that individuals are held responsible for some, but not all, factors that affect their health. Informational problems, however, often make it difficult to implement the ideal of equal opportunity in the context (...)
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  30.  10
    Anthony M. Cutter (2006). To Clear or to Convict? The Role of Genomics in Criminal Justice. Genomics, Society and Policy 2 (1):1-15.
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  31.  24
    John I. Glass (2013). Synthetic Genomics and the Construction of a Synthetic Bacterial Cell. Perspectives in Biology and Medicine 55 (4):473-489.
    The topic of synthetic life has long been a subject for science fiction writers, philosophers, and even scientists. With the announcement in 2010 by renowned biologist J. Craig Venter that he and a team of scientists from the J. Craig Venter Institute (JCVI) had created a bacterial cell with chemically synthesized genome, discussions of synthetic life were no longer just conjecture.Humans had assembled nonliving components to make a living cell (Gibson et al. 2010). I was one of the leaders of (...)
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  32.  8
    Alexander W. Cappelen, Ole F. Norheim & Bertil Tungodden (2008). Genomics and Equal Opportunity Ethics. Journal of Medical Ethics 34 (5):361-364.
    Genomics provides information on genetic susceptibility to diseases and new possibilities for interventions which can fundamentally alter the design of fair health policies. The aim of this paper is to explore implications of genomics from the perspective of equal opportunity ethics. The ideal of equal opportunity requires that individuals are held responsible for some, but not all, factors that affect their health. Informational problems, however, often make it difficult to implement the ideal of equal opportunity in the context (...)
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  33. Alex Rosenberg, Emerging Normative Problems of Genomics.
    The administrators of the human genome project were eager to stimulate public discussion, academic debate, legal and legislative deliberation of how individuals and institutions should respond to the revolution in genomics. Paramount among the issues whose discussion they encouraged are three obvious matters: The threat which access to our genetic information poses for heath insurance, employment, and social discrimination the nefarious consequences for scientific advance of turning basic scientific discoveries about genomes into private property The permissibility of prenatal genetic (...)
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  34.  8
    Shawn H. E. Harmon (2008). Ethical Rhetoric: Genomics and the Moral Content of UNESCO's “Universal” Declarations. Journal of Medical Ethics 34 (11):e24-e24.
    Genomic research is an expanding and subversive field, leaking into various others, from environmental protection to food production to healthcare delivery, and in doing so, it is reshaping our relationship with them. The international community has issued various declaratory instruments aimed at the human genome and genomic research. These soft law instruments stress the special nature of genomics and our genetic heritage, and attempt to set limits on our activities with respect to same, as informed by the human rights (...)
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  35.  4
    Gail E. Henderson, Eric T. Juengst, Nancy M. P. King, Kristine Kuczynski & Marsha Michie (2012). What Research Ethics Should Learn From Genomics and Society Research: Lessons From the ELSI Congress of 2011. Journal of Law, Medicine & Ethics 40 (4):1008-1024.
    Research on the ethical, legal, and social implications (ELSI) of human genomics has devoted significant attention to the research ethics issues that arise from genomic science as it moves through the translational process. Given the prominence of these issues in today's debates over the state of research ethics overall, these studies are well positioned to contribute important data, contextual considerations, and policy arguments to the wider research ethics community's deliberations, and ultimately to develop a research ethics that can help (...)
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  36.  7
    Clarissa Allen, Karine Sénécal & Denise Avard (2014). Defining the Scope of Public Engagement: Examining the “Right Not to Know” in Public Health Genomics. Journal of Law, Medicine & Ethics 42 (1):11-18.
    In this article, we explore the concept of a “right not to know” on a population rather than individual level. We argue that a population level “right not to know” is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.
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  37.  6
    Deborah Mascalzoni, Andrew Hicks & Peter P. Pramstaller (2009). Consenting in Population Genomics as an Open Communication Process. Studies in Ethics, Law, and Technology 3 (1).
    New advances in genomics changed the research landscape significantly in the last few years. The power and significance of already existing tissue collections is enhanced by their growing size, and all over the world national projects aim to connect with each other at the international level, calling for integrated and common regulations in the transnational research field. The post genomics era faces problems that are partially different from those within the classical bioethical framework. The challenge is to find (...)
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  38.  10
    Catherine Kendig, Reconstructing the Concept of Homology for Genomics. Pittsburgh/London Colloquium on Philosophy of Biology and Neuroscience, University of London. Online at PhilSci Archive.
    Homology has been one of, if not the most, fecund concepts which has been used towards the understanding of the genomes of the model organisms. The evidence for this claim can be supported best with an examination of current research in comparative genomics. In comparative genomics, the information of genes or segments of the genome, and their location and sequence, are used to search for genes similar to them, known as 'homologues'. Homologues can be either within that same (...)
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  39.  2
    Ruth Chadwick, Telling the Truth About Genomics.
    Issues about communication in genomics have moved out of the clinic and into the public arena. Scientists other than clinicians are confronted by calls for public engagement. Genomics gives rise to these demands partly because it inevitably raises the three basic questions of philosophy as outlined by Kant: What can I know? What ought I to do? What may I hope? Genomics on its own cannot answer these questions. In relation to what can be known, its answer (...)
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  40. Malte Dreyer, Jeanette Erdmann & Christoph Rehmann-Sutter (eds.) (2016). Genetic Transparency? Ethical and Social Implications of Next Generation Human Genomics and Genetic Medicine. Brill | Rodopi.
    _Genetic Transparency?_ tackles the question of who has, or should have access to personal genomic information. Genomics experts and scholars from the humanities and social sciences discuss the changes in interpersonal relationships, human self-understandings, ethics, law, and the health systems.
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  41. Cor Van Der Weele & Jozef Keulartz (2009). Heroes of Agricultural Innovation: Genomics and Metaphoric Plurality. Genomics, Society and Policy 5:59-73.
    New technology has a prominent place in the theory and practice of innovation, but the association between high tech and innovation is not inevitable. In this paper, we discuss six metaphorical heroes of agricultural innovation, starting with the dominant hero of frontier science and technology. At first sight, our six heroes can be divided in those who are pro- and those who are anti-technology. Yet in the end technology, and more specifically GM technology, does not emerge as the main issue. (...)
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  42. Susan M. Wolf, Wylie Burke & Barbara A. Koenig (2015). Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research‐Clinical Divide. Journal of Law, Medicine and Ethics 43 (3):486-501.
    Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.
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  43.  11
    Rachel A. Ankeny (forthcoming). Historiographic Reflections on Model Organisms: Or How the Mureaucracy May Be Limiting Our Understanding of Contemporary Genetics and Genomics. History and Philosophy of the Life Sciences.
  44.  25
    Peter J. Richersona, Gene-Culture Coevolution in the Age of Genomics.
    The use of socially learned information (culture) is central to human adaptations. We investigate the hypothesis that the process of cultural evolution has played an active, leading role in the evolution of genes. Culture normally evolves more rapidly than genes, creating novel environments that expose genes to new selective pressures. Many human genes that have been shown to be under recent or current selection are changing as a result of new environments created by cultural innovations. Some changed in response to (...)
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  45.  3
    Edna Suárez-Díaz (2010). Making Room for New Faces: Evolution, Genomics and the Growth of Bioinformatics. History and Philosophy of the Life Sciences 32 (1).
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  46.  8
    Alexander Powell, Maureen A. O. Malley, Staffan Muller-Wille, Jane Calvert & John Dupré (2007). Disciplinary Baptisms: A Comparison of the Naming Stories of Genetics, Molecular Biology, Genomics, and Systems Biology. History and Philosophy of the Life Sciences 29 (1):5.
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  47.  2
    Joan L. McGregor (2007). Population Genomics and Research Ethics with Socially Identifable Groups. Journal of Law, Medicine & Ethics 35 (3):356-370.
    In this paper, the author questions whether the research ethics guidelines and procedures are robust enough to protect groups when conducting genetics research with socially identifiable populations, particularly with Native American groups. The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups.
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  48.  2
    Maya Sabatello & Paul S. Appelbaum (2015). Honey, I Sequenced the Kids: Preventive Genomics and the Complexities of Adolescence. American Journal of Bioethics 15 (7):19-21.
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  49.  3
    Lorraine Cowley (2016). What Can We Learn From Patients’ Ethical Thinking About the Right ‘Not to Know’ in Genomics? Lessons From Cancer Genetic Testing for Genetic Counselling. Bioethics 30 (8):628-635.
    This article is based on a qualitative empirical project about a distinct kinship group who were among the first identified internationally as having a genetic susceptibility to cancer. 50 were invited to participate. 15, who had all accepted testing, were interviewed. They form a unique case study. This study aimed to explore interviewees’ experiences of genetic testing and how these influenced their family relationships. A key finding was that participants framed the decision to be tested as ‘common sense’; the idea (...)
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  50.  1
    Angela Fenwick, Sandi Dheensa, Gillian Crawford, Shiri Shkedi-Rafid & Anneke Lucassen (2015). Rescue Obligations and Collective Approaches: Complexities in Genomics. American Journal of Bioethics 15 (2):23-25.
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