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xiii | |
Foreword |
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xvii | |
Preface: Introduction to Social and Economic Genomics |
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xix | |
Acknowledgments |
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xxiii | |
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1 Personal Genomics and its Sociotechnical Transformations |
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1 | (20) |
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1 | (2) |
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Personal Genomics and its Sociotechnical Expectations |
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3 | (4) |
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Personal Genomics in Perspective |
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7 | (7) |
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Personal Genomics and the Extent of Sociotechnical Change |
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14 | (3) |
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17 | (1) |
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17 | (1) |
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17 | (4) |
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2 Genetics, Genomics, and Society: Challenges and Choices |
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21 | (18) |
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21 | (3) |
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Health Care and the Challenge of Common, Complex Disease |
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24 | (2) |
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Genome Data: Challenges of Interpretation, Disclosure, and Data Storage |
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26 | (4) |
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30 | (3) |
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Family Communication About Genetics |
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33 | (2) |
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The Future of Genetics Research in Medicine |
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35 | (1) |
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35 | (1) |
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36 | (3) |
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3 Genomics and Patient Empowerment |
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39 | (30) |
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39 | (1) |
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What Are the Benefits of Attending a Clinical Genetics Service (CGS)? |
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40 | (1) |
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Educational Impact of Genetic Counseling |
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41 | (2) |
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Psychological Impact of Genetic Counseling and Testing |
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43 | (1) |
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Are There Patient Benefits to Be Derived from Using a CGS? |
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44 | (10) |
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Measuring Patient Empowerment in CGS |
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54 | (3) |
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Does Attendance at CGS Empower Patients? |
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57 | (1) |
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Patient Empowerment: The Broader Context |
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57 | (1) |
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Patient Empowerment and Genetic Conditions |
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58 | (1) |
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Genomic Information, Health Literacy, Health Behavior, and Patient Empowerment |
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59 | (4) |
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63 | (1) |
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64 | (5) |
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4 The Expanding Scope of Gen-Ethics |
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69 | (14) |
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Introduction---Genomics and Bioethics |
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69 | (1) |
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Issues in Clinical Genetics: Genetic Testing and Counseling |
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70 | (2) |
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72 | (1) |
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73 | (1) |
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73 | (1) |
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74 | (3) |
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77 | (1) |
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"Recreational" and Behavioral Genomics |
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78 | (1) |
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79 | (1) |
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International Perspectives and Cultural Issues |
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80 | (1) |
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81 | (1) |
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81 | (2) |
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5 Health Economic Perspectives of Genomics |
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83 | (36) |
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84 | (1) |
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85 | (4) |
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Applying Economic Evaluation Approaches to Genomics |
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89 | (9) |
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Challenges for Economic Evaluation |
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98 | (14) |
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112 | (1) |
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112 | (7) |
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6 Legal Aspects of Health Applications of Genomics |
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119 | (16) |
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119 | (1) |
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120 | (1) |
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120 | (5) |
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Comparative Issues in Quebec |
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125 | (5) |
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Conclusions Focusing on What This Will Mean for Next Generation Sequencing |
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130 | (1) |
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131 | (4) |
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7 Genomics, Patents, and Human Rights |
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135 | (12) |
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Introduction: Genomics Technologies and Legal Protection |
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135 | (1) |
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Human Rights to Health, to Food, and to Scientific Participation |
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136 | (2) |
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How to Interpret Human Rights? |
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138 | (1) |
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The Structure of Genomics |
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138 | (1) |
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Property Rights Regarding Intangible Objects |
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139 | (2) |
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Objections to Patenting from a Human Rights' Perspective |
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141 | (3) |
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Alternatives for the Current IPR Regime: Open Source, Open Access, Food Impact Fund |
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144 | (1) |
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145 | (1) |
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145 | (2) |
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8 Teaching Genetics and Genomics for Social and Lay Professionals |
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147 | (18) |
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147 | (1) |
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148 | (1) |
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Section 1 Practical Advice for Teaching and Learning About Genetics and Genomics |
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148 | (10) |
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Section 2 Key Genetic and Genomic Concepts to Cover in a Teaching Session |
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158 | (5) |
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163 | (1) |
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163 | (2) |
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9 Engaging and Empowering Public and Professionals in Genomics |
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165 | (28) |
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166 | (1) |
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Section 1 Let's Talk About Genes and I Don't Mean Trousers: Children's Views on Genomics and Cancer |
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167 | (1) |
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167 | (2) |
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169 | (3) |
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Family History and Inheritance: Group Activities |
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172 | (3) |
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The Let's Talk About Genes Rap |
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175 | (2) |
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Engaging Children: Was it Successful? |
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177 | (1) |
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Section 2 Stories as an Approach to Engaging and Empowering People |
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178 | (13) |
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191 | (1) |
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191 | (2) |
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10 The "Life Costs" of Living with Rare Genetic Diseases |
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193 | (14) |
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Introduction: The Life Costs of Rare Diseases? |
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193 | (2) |
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The Challenge of "Adverse Economies of Scale" |
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195 | (3) |
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Case Study 1---Huntington's Disease |
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198 | (3) |
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Case Study 2---Phenylketonuria |
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201 | (2) |
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Conclusion: Toward a More Balanced Approach |
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203 | (1) |
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204 | (3) |
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11 Genomics and the Bioeconomy: Opportunities to Meet Global Challenges |
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207 | (32) |
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208 | (1) |
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The Grand Challenges Ecosystem |
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209 | (2) |
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Food Production in a Bioeconomy |
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211 | (10) |
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Industrial Biotechnology---Replacing the Oil Barrel |
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221 | (10) |
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Challenges on Many Fronts |
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231 | (1) |
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232 | (1) |
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233 | (1) |
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233 | (6) |
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12 Socioeconomic Outcomes of Genomics in the Developing World |
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239 | (20) |
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240 | (2) |
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Harnessing Genomics for Developing Countries |
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242 | (9) |
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Biotechnology and Bioindustry |
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251 | (1) |
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252 | (1) |
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252 | (4) |
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256 | (1) |
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257 | (2) |
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13 Roles of Genomics in Addressing Global Food Security |
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259 | (12) |
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259 | (1) |
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The Challenge of Global Food Security |
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260 | (2) |
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The Impact of Climate Change |
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262 | (1) |
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So, How Can Genomics Help? |
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263 | (1) |
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What Are the Key Future Targets for Genomics-Assisted Crop Improvement? |
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264 | (3) |
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Impacts of Genomics in Developing Countries |
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267 | (1) |
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268 | (1) |
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268 | (3) |
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14 Genomics and Traditional Indian Ayurvedic Medicine |
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271 | (22) |
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271 | (1) |
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Need for a Paradigm Shift in Modern Health Care Practice |
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272 | (2) |
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Advent of Genomics in Personalized Medicine |
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274 | (1) |
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Ayurveda: Ancient Indian System of Medicine |
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275 | (6) |
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Getting Ayurveda to Mainstream |
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281 | (4) |
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Ayurgenomics: Approach for Integration of Ayurveda into Current Medical Practice |
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285 | (3) |
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288 | (1) |
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288 | (1) |
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289 | (4) |
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15 Genomics and Traditional Chinese Medicine |
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293 | (16) |
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293 | (1) |
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Genomics, Genomic Medicine, and Personalized Medicine |
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294 | (1) |
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Key Fundamentals of TCM Concepts |
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294 | (6) |
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Application of Genomics Technologies in the Authentication of TCM and Acupuncture |
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300 | (5) |
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305 | (1) |
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306 | (3) |
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16 Human Genetics and Genomics and Sociocultural Beliefs and Practices in South Africa |
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309 | (12) |
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309 | (1) |
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Genetic Services in South Africa |
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310 | (1) |
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Understanding Culture in the Context of Health |
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310 | (3) |
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Sociocultural Issues, Genetic Disorders, and Other Health Issues |
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313 | (3) |
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Oral Histories and Belief Systems Associated with Origins |
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316 | (1) |
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317 | (1) |
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318 | (1) |
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318 | (3) |
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17 Genomics and Spirituality |
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321 | (14) |
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321 | (1) |
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321 | (1) |
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The Life---the Pagan Perspective |
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322 | (2) |
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324 | (1) |
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The Human Race(s) and Population Variation |
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325 | (3) |
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Scope of Genomics---Reductionism and Emergentism |
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328 | (1) |
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The Future---Continuing Genomics |
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328 | (4) |
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332 | (1) |
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332 | (3) |
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18 The Sociodemographic and Economic Correlates of Consanguineous Marriages in Highly Consanguineous Populations |
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335 | (28) |
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335 | (3) |
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Secular Trends in Consanguineous Marriages |
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338 | (2) |
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What Will Be the Future Trend of Consanguinity in Highly Consanguineous Populations? |
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340 | (1) |
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Health Impact on Offspring of Consanguineous Parents |
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341 | (1) |
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Why Are Consanguineous Marriages Preferred and Respected in Some Populations? |
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342 | (2) |
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Does Consanguinity Minimize Intimate Partner Violence? |
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344 | (2) |
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Consanguinity and Divorce |
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346 | (1) |
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Consanguinity and Civil Unrest |
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346 | (1) |
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Consanguinity and Spouses Educational Levels |
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347 | (2) |
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Consanguinity in Relation to Spouse Employment Status |
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349 | (2) |
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Age at Marriage and Fertility Rate in Consanguineous Marriages |
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351 | (2) |
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Economic Drivers for Consanguineous Marriages |
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353 | (2) |
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Socioeconomic Status and Consanguinity |
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355 | (1) |
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Consanguinity and Religion |
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355 | (1) |
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Consanguinity as Related to Ethnicity and Urban/Rural Settings |
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356 | (1) |
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357 | (1) |
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358 | (5) |
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19 The International Law and Regulation of Medical Genetics and Genomics |
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363 | (26) |
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363 | (3) |
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Main Challenges in the Field of International Biomedical Law |
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366 | (17) |
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383 | (1) |
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384 | (5) |
Glossary: "Genomics and Society" |
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389 | (12) |
Index |
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401 | |