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Leo P. Ten Kate - One of the best experts on this subject based on the ideXlab platform.
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Earliest trace, so far, of Community Genetics as a distinct concept.
Journal of community genetics, 2012Co-Authors: Leo P. Ten KateAbstract:According to Modell and Kuliev (1998), the history of Community Genetics as a distinct concept in medicine started in 1981 with WHO in Geneva. This was about the same time that Community Genetics was introduced in biology for research on interacting populations in a shared environment (Ten Kate et al. 2010). We do not know whether either or both of these early uses can be traced back to even earlier usage.
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Erratum to: A short history of the first three years of the Community Genetics Network and its Newsletter.
Journal of community genetics, 2011Co-Authors: Leo P. Ten Kate, Annie PlourdeAbstract:Erratum to: J Community Genet DOI 10.1007/s12687-011-0049-x Unfortunately the following acknowledgement has been erroneously omitted: This project was supported by ECOGENE-21, the Canadian Institutes of Health Research (CIHR team in Community Genetics (grant #CTP-82941)). The authors also want to express their gratitude to Drs. D Gaudet and D Brisson, Department of Medicine, Universite de Montreal, ECOGENE-21 and Lipid Clinic, Chicoutimi Hospital, Saguenay, QC, Canada, for their support
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The journal of Community Genetics
Journal of community genetics, 2010Co-Authors: Jörg Schmidtke, Leo P. Ten KateAbstract:The new journal Journal of Community Genetics sets another landmark in the history of Community Genetics. In 1987, the term “Community Genetics services” was first used in a WHO document to describe clinical genetic activities offered directly to the population, and the need for research in this area of medical practice was soon realized (Modell et al. 1991; Modell 1992). In 1998, the journal Community Genetics was founded (Ten Kate 1998) and, for 11 years, served as a forum for all research activities in the field. The new Journal of Community Genetics follows this tradition as the only periodical publication worldwide devoted to this branch of medicine. It is an official journal of the International Society of Community Genetics and Genomics, founded in 2009, and fulfills the prophecy that a good concept may temporally be invisible but, as a submarine, will surface somewhere (Ten Kate 2008). Meanwhile, the international multidisciplinary Community Genetics e-mail network has more than 800 members at the time of writing and continues to grow. We believe that Community Genetics and “public health Genetics” are not the same, although they have much in common. The principal aim of public health Genetics is to improve population health by reducing disease prevalence. The ultimate aim of Community Genetics is the well-being of the individual in that population. These different aims can be in conflict, particularly in the area of reproductive medicine. An informal group of 14 scientists from Europe, Africa, Asia, Australia, North America, and South America has recently reached the consensus definition: Community Genetics is the art and science of the responsible and realistic application of health and disease-related Genetics and genomics knowledge and technologies in human populations and communities to the benefit of individuals therein. Community Genetics is multi-, inter- and transdisciplinary and aims to maximize benefits while minimizing the risk of harm, respecting the autonomy of individuals and ensuring equity. (Ten Kate et al. 2010). The main areas of research in Community Genetics were identified by these authors to include: Genetic screening Genetic literacy and education Access and quality of genetic services Genetics in primary care Genetics in middle-income and low-income countries Genetics in disadvantaged subpopulations Registries of congenital and genetic disorders Genetics in preconception care Public consultation on genetic issues Epidemiological issues Economic issues Psychosocial issues Ethical and legal issues Policy issues The Journal of Community Genetics invites the scientific Community to submit research on all these activities. The journal will present original research papers, reviews, short communications, case and country reports, commentaries, news, and correspondence. The journal will serve as a forum for Community Genetics worldwide, with a focus on low-income and middle-income countries, many of which now experience the epidemiological transition from infectious disease to genetic disease as major constituents of population and individual disease load. This is reflected by the composition of the board of associate editors and by the members of the advisory board, rendering this Springer periodical a journal with an impressively broad geographic distribution of scientific support. We would like to thank the publisher for their engagement in a field of research that is likely to impact, in the near future, on a dramatically increasing number of communities and individuals worldwide, yet remains heavily underdeveloped and underfunded even in the majority of developed countries. We hope that this journal will help to increase the visibility of Community needs and demands for genetic services, and the necessity for research in this area. Jorg Schmidtke and Leo P. ten Kate
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Community Genetics. Its definition 2010.
Journal of community genetics, 2010Co-Authors: Leo P. Ten Kate, Lihadh Al-gazali, Sonia S. Anand, Alan H. Bittles, Jean-jacques Cassiman, Arnold L. Christianson, Martina C. Cornel, Hanan Hamamy, Helena Kääriäinen, Ulf KristofferssonAbstract:This paper presents a definition of the medical field of Community Genetics. It starts with a brief historical overview, defines the requirements for an adequate definition, presents the definition, and discusses the constituent parts of the definition.
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From Milestone to Moral Obligation
Community Genetics, 2007Co-Authors: Leo P. Ten KateAbstract:Eighty papers focused on specific conditions or groups of conditions. A quarter of these (20) concentrated on cancer, either on a specific form or more or less in general, followed by birth defects in general (10), Down syndrome (7), thalassemia and other hemoglobinopathies (7), and cystic fibrosis (4). Twenty-four other conditions were specified. The subjects of the studies in these 80 papers could be categorized into characteristics of the (patients with the) condition (35; e.g., prevalence, classification or risk factors), testing and screening (31; e.g., utilization, psychological sequels or economic evaluation), and others (14; e.g., performance of health care providers). Among the 38 papers which did not focus on a specific condition and were more general in scope, genetic education (6) and genetic services (4) were the largest subcategories. As to the methodology of the 118 studies reported, questionnaires were frequently used (36). Other popular methods were interviews (12), descriptions of existing programs (12), molecular or other laboratory testing (10), evaluation of existing registry data (7), and focus groups (7). Many years ago, Diane Brisson proposed to follow the evolution of the concept of Community Genetics through time [1] . Our small analysis of origin and content of original papers shows the breadth of this field. Of course, the limits are set by the editors who may reject papers on the basis of what they regard as the scope of the journal. But within these limits, the diversity of Community Genetics as a science is apparent. It is true that Community Genetics is not only a science, but also an art. This art may be more reflected in our case reports section, which started in 2003 and does not have enough papers for analysis yet. And remember, Community Genetics is not only a handy collective noun for related activities, but a moral obligation as well [2, 3] . This first issue of the 2007 volume 10 of Community Genetics represents a milestone in several ways. First, its appearance shows that we have succeeded in filling the empty niche for publications at the crossing of medicine, Genetics and society. What started as an experiment with unsure outcome has turned into a secure provision. Second, its early appearance indicates that we have a well-filled portfolio of accepted manuscripts awaiting publication. This has been different in the past, when at times we were not sure if and when the next issue would appear. Issues 3 and 4 of the 2000 volume for instance did not appear before April and May 2001. Notwithstanding such problems, we have always stuck to maintaining a high quality of papers. About 50% of submissions never made it to appearance. This, of course, is only possible by the voluntary effort of the many peer reviewers which we gratefully acknowledge. Third, this year (2007), the first impact factor for the journal will become available. This will be based on the sum of all articles published in 2004 and 2005 as a denominator and a count of all references to these articles in 2005 and 2006 as numerator. Looking back to the preceding volumes, it is quite clear that spontaneous submissions of original research papers published in regular issues are the backbone of the journal. This is not to disqualify special issues, reviews, case reports or other sections we have. A backbone without head, limbs or tail would not be attractive. However, here, I want to focus on the 118 original papers which appeared in the first 9 volumes of the journal. Where did they come from and what did they report on? All continents and 28 different countries were represented. The majority of papers came from Europe (n = 61), followed by the Americas (37) and Asia (13). If categorized by country, the lead was taken by the United States of America (29), followed by the United Kingdom (16) and the Netherlands (14). As to discipline, the largest group of authors (44) was composed of geneticists (of all kinds), meaning that the majority of authors were nongeneticists. Among them, epidemiologists (10) and psychologists (8) prevail, but many other different sciences are represented. Just a few examples are public health, social medicine, economics, social science and behavioral science, illustrating the multidisciplinary character of Community Genetics.
Daniel Gaudet - One of the best experts on this subject based on the ideXlab platform.
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From Community Genetics to Community Genomics: The Quebec Experience
Public Health Genomics, 2000Co-Authors: Daniel Gaudet, Thomas J. Hudson, Claude LabergeAbstract:Optimal health care delivery requires an understanding of genetic diversity and its associated risks. Population genomics is a rapidly emerging field that will yield such knowledge. As we are entering the genomic era, the need to develop policies and strategies integrating genetic determinants of health into medical services, health promotion and disease prevention is becoming increasingly important, perhaps inevitable. To this end, the Quebec Network of Applied Genetic Medicine (RMGA) supports a multidisciplinary and integrative research strategy which combines Quebec’s expertise in population and Community Genetics. The present article briefly describes two projects developed with a view to foster such strategy. The ECOGENE-21 project is designed to develop and evaluate resources and strategies for integrating and transferring new knowledge of the human genome to individuals, families and communities. ECOGENE-21 will be capitalizing on another project called CART@GENE, which is generating a combined genetic and demographic map containing information on allelic variation in the subpopulations of Quebec. These two projects are complementary and will be integrated with the ultimate goal of transferring knowledge gained from basic research, to promote health improvement and disease prevention.
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Community Genetics in Eastern Québec: The Experience of the Corporation for Research and Action on Hereditary Diseases
Public Health Genomics, 2000Co-Authors: Anne Vigneault, Céline Bélanger, Diane Brisson, Daniel GaudetAbstract:In the Saguenay-Lac St. Jean (SLSJ) region of Quebec, the high prevalence of some hereditary diseases has led concerned Community members to create the Corporation for Research and Action on Hereditar
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Procedure to protect confidentiality of familial data in Community Genetics and genomic research.
Clinical genetics, 1999Co-Authors: Daniel Gaudet, Thomas J. Hudson, Steve Arsenault, Céline Bélanger, Patrice Perron, Manon Bernard, Pavel HametAbstract:The collection of familial data is an essential step for Community Genetics programs or genetic research. Ethical issues concerning privacy and confidentiality present a major challenge in such programs. In order to keep familial data confidential, we have developed a family-based numerical coding procedure which allows the use of confidential data and the determination of familial relationships without risk of disclosure. This procedure is composed of two parts: the physical separation of identifying information and individual data; and the use of a code containing all the information required to build family trees. This procedure has been used in Eastern Quebec since 1995, mainly for screening, genetic counseling, research on familial dyslipidemias, public health intervention, and research projects on the Genetics of complex traits, such as arterial hypertension and coronary artery disease.
Marc T. J. Johnson - One of the best experts on this subject based on the ideXlab platform.
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Sizing up Community Genetics: it's a matter of scale
Oikos, 2011Co-Authors: Ayco J. M. Tack, Marc T. J. Johnson, Tomas RoslinAbstract:The burgeoning field of Community Genetics posits that genetic variation within species affects the structure and dynamics of associated communities and ecosystems. While many experiments support this hypothesis, we argue that the most commonly employed experimental design suffers from a fundamental flaw that might result in overestimating the importance of genetic variation. Specifically, most studies collect genotypes from a wide area but perform experiments in small common gardens. Since environmental and genetic variation typically increase with spatial scale, this mismatch in scale is predicted to artificially inflate estimates of the ecological importance of genetic effects. Furthermore, most existing studies have used study systems with particular ecological characteristics, which might further inflate the inferred importance of genetic variation. To critically examine this potential problem, we reanalyze previous studies in Community Genetics and show how current methods lead to biased conclusions. More specifically, while a growing body of literature shows that intraspecific genetic variation can have an effect, it does not accurately estimate its effect size. As a remedy to this bias, we propose an experimental design that can accurately quantify the importance of genetic and environmental variation in affecting communities and ecosystems.
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Community Genetics: what have we accomplished and where should we be going?
Philosophical transactions of the Royal Society of London. Series B Biological sciences, 2011Co-Authors: Erika I. Hersch-green, Nash E. Turley, Marc T. J. JohnsonAbstract:Research in Community Genetics seeks to understand how the dynamic interplay between ecology and evolution shapes simple and complex communities and ecosystems. A Community Genetics perspective, however, may not be necessary or informative for all studies and systems. To better understand when and how intraspecific genetic variation and microevolution are important in Community and ecosystem ecology, we suggest future research should focus on three areas: (i) determining the relative importance of intraspecific genetic variation compared with other ecological factors in mediating Community and ecosystem properties; (ii) understanding the importance of microevolution in shaping ecological dynamics in multi-trophic communities; and (iii) deciphering the phenotypic and associated genetic mechanisms that drive Community and ecosystem processes. Here, we identify key areas of research that will increase our understanding of the ecology and evolution of complex communities but that are currently missing in Community Genetics. We then suggest experiments designed to meet these current gaps.
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An emerging synthesis between Community ecology and evolutionary biology.
Trends in ecology & evolution, 2007Co-Authors: Marc T. J. Johnson, John R. StinchcombeAbstract:A synthesis between Community ecology and evolutionary biology is emerging that identifies how genetic variation and evolution within one species can shape the ecological properties of entire communities and, in turn, how Community context can govern evolutionary processes and patterns. This synthesis incorporates research on the ecology and evolution within communities over short timescales (Community Genetics and diffuse coevolution), as well as macroevolutionary timescales (Community phyloGenetics and co-diversification of communities). As we discuss here, preliminary evidence supports the hypothesis that there is a dynamic interplay between ecology and evolution within communities, yet researchers have not yet demonstrated convincingly whether, and under what circumstances, it is important for biologists to bridge Community ecology and evolutionary biology. Answering this question will have important implications for both basic and applied problems in biology.
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The ecological play of predator-prey dynamics in an evolutionary theatre
Trends in Ecology & Evolution, 2003Co-Authors: Marc T. J. Johnson, Anurag A. AgrawalAbstract:Abstract Although over 40 years of theory have addressed how evolutionary processes can affect the ecology of predator–prey interactions, few empirical data have addressed the same issue. Shertzer et al. and Yoshida et al. have recently combined manipulative experiments with mathematical models to demonstrate that evolutionary change in an algal prey strongly affects Community dynamics with their rotifer predator. These studies contribute to recent developments in Community Genetics and the diversity–stability debate.
Aviad E. Raz - One of the best experts on this subject based on the ideXlab platform.
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Commentary: a sociologist's view on Community Genetics
Journal of Community Genetics, 2010Co-Authors: Aviad E. RazAbstract:This commentary illustrates and discusses potential research directions for sociologists and anthropologists interested in the field of Community Genetics and its emerging networks of individuals genetically at risk. Community Genetics—the application of medical Genetics in Community settings for the benefit of individuals—also involves social issues of lay-professional misunderstandings (and more recently also the different perspectives of various expert communities), stigmatization, discrimination, and medicalization. Focusing on a socio-anthropological perspective regarding the views and disagreements surrounding the definition and scope of Community Genetics, I overview several epistemological, methodological, and practical contributions that such perspective can offer to the study of Community Genetics.
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Community Genetics and genetic alliances eugenics carrier testing and networks of risk
2009Co-Authors: Aviad E. RazAbstract:Introduction: Carrier Testing, Eugenics, and Networks of Risk 1. What is Community Genetics? Definitions and Debates 2. Carrier Matching and Collective Socialisation: Dor Yesharim and the Reinforcement of Stigma 3. Reproductive Carrier Testing between Orthodoxy and Change 4. The Medicalisation of Cousin Marriage: Carrier Testing in a Muslim Community 5. Genetic Alliances: The Dilemma of Care and Prevention 6. Scientific, Communal and Lay Interpretations and Communicative Gaps Regarding Carrier Testing Conclusion: In Search of Moral Models
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eugenic utopias dystopias reproGenetics and Community Genetics
Sociology of Health and Illness, 2009Co-Authors: Aviad E. RazAbstract:The impetus for this review is the intriguing realisation that eugenics, viewed as dystopian and authoritarian in most of the 20th century, is in the process of being reinterpreted today – in the context of reproductive Genetics – as utopian and liberal. This review offers an analytical framework for mapping the growing literature on this subject in order to provide a summary for both teaching and research in medical sociology. Recent works are subsumed and explored in three areas: historical criticism of the ‘old eugenics’; the continuation of this stream in the form of criticism of reproGenetics as a new, ‘backdoor’ eugenic regime of bio-governmentality – an area which also includes the application of Foucauldian and feminist perspectives; and the recent enthusiasm regarding ‘liberal eugenics,’ claiming that reprogenetic decisions should be left to individual consumers thus enhancing their options in the health market. The review concludes by discussing and illustrating potential research directions in this field, with a focus on the social and ethical aspects of ‘Community Genetics’ and its emerging networks of individuals genetically at risk.
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Can Population-Based Carrier Screening Be Left to the Community?
Journal of Genetic Counseling, 2009Co-Authors: Aviad E. RazAbstract:As more genes and mutations are identified in diseases for which particular populations are at increased risk, it is becoming more important to address the social interface between communities and carrier screening. While disproportionately targeted in genetic research, the Orthodox Jewish Community often shies away, due to social and religious constraints, from genetic testing and counseling offered by the public health system. The solution is provided by Dor Yeshorim —a program which has become for many a prototype for the successful merging of modern reprogenetic screening and traditional communities. My commentary focuses on the gaps between the rationale and practice of Dor Yeshorim , and the implications of these gaps regarding the trade-off involved in leaving carrier screening to the Community. I conclude with a set of questions raised by the implications of the unintended consequences of Community Genetics.
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Eugenic utopias/dystopias, reproGenetics, and Community Genetics.
Sociology of health & illness, 2009Co-Authors: Aviad E. RazAbstract:The impetus for this review is the intriguing realisation that eugenics, viewed as dystopian and authoritarian in most of the 20th century, is in the process of being reinterpreted today – in the context of reproductive Genetics – as utopian and liberal. This review offers an analytical framework for mapping the growing literature on this subject in order to provide a summary for both teaching and research in medical sociology. Recent works are subsumed and explored in three areas: historical criticism of the ‘old eugenics’; the continuation of this stream in the form of criticism of reproGenetics as a new, ‘backdoor’ eugenic regime of bio-governmentality – an area which also includes the application of Foucauldian and feminist perspectives; and the recent enthusiasm regarding ‘liberal eugenics,’ claiming that reprogenetic decisions should be left to individual consumers thus enhancing their options in the health market. The review concludes by discussing and illustrating potential research directions in this field, with a focus on the social and ethical aspects of ‘Community Genetics’ and its emerging networks of individuals genetically at risk.
Annie Plourde - One of the best experts on this subject based on the ideXlab platform.
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Erratum to: A short history of the first three years of the Community Genetics Network and its Newsletter.
Journal of community genetics, 2011Co-Authors: Leo P. Ten Kate, Annie PlourdeAbstract:Erratum to: J Community Genet DOI 10.1007/s12687-011-0049-x Unfortunately the following acknowledgement has been erroneously omitted: This project was supported by ECOGENE-21, the Canadian Institutes of Health Research (CIHR team in Community Genetics (grant #CTP-82941)). The authors also want to express their gratitude to Drs. D Gaudet and D Brisson, Department of Medicine, Universite de Montreal, ECOGENE-21 and Lipid Clinic, Chicoutimi Hospital, Saguenay, QC, Canada, for their support
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A short history of the first 3 years of the Community Genetics Network and its newsletter
Journal of Community Genetics, 2011Co-Authors: Leo P. Kate, Annie PlourdeAbstract:When in 2007 it became clear that the Karger journal Community Genetics would change its name and scope, the first author started to establish an international, multidisciplinary e-mail network and a newsletter with papers authored by the members of the network. This paper reports on the first 3 years of the network. At the end of the 3-year period, there were 858 members, 50 newsletters had appeared, and almost 1,500 different papers from 458 journals had been cited. This model may serve as an example for others who want to bring together those sharing a common interest.