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Genomics and Society: Ethical, Legal, Cultural and Socioeconomic Implications [Kõva köide]

Edited by (Honorary Clinical Professor, William Harvey Research Institute, Queen Mary University of London, UK), Edited by (Distinguished Research Professor and Director, ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social A)
  • Formaat: Hardback, 438 pages, kõrgus x laius: 235x191 mm, kaal: 1110 g, 50 illustrations; Illustrations, unspecified
  • Ilmumisaeg: 17-Nov-2015
  • Kirjastus: Academic Press Inc
  • ISBN-10: 0124201954
  • ISBN-13: 9780124201958
Teised raamatud teemal:
  • Formaat: Hardback, 438 pages, kõrgus x laius: 235x191 mm, kaal: 1110 g, 50 illustrations; Illustrations, unspecified
  • Ilmumisaeg: 17-Nov-2015
  • Kirjastus: Academic Press Inc
  • ISBN-10: 0124201954
  • ISBN-13: 9780124201958
Teised raamatud teemal:
Genomics and Society; Ethical, Legal-Cultural, and Socioeconomic Implications is the first book to address the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011.The work addresses fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare system.Of particular interest to healthcare practitioners, bioethicists, and health economists, and of tangential interest to the gamut of applied social scientists investigating the societal impact of new medical paradigms, the work describes a myriad of issues around consent, confidentiality, rights, patenting, regulation, and legality in the new era of genomic medicine.Addresses the vast and thorny web of ELSI topics identified as core priorities of the NHGRI in 2011Presents the core fundamental issues of biosociety and bioeconomy as the revolution in biology moves from research lab to healthcare systemDescribes a myriad of issues around consent, including confidentiality, rights, patenting, regulation, and more

Arvustused

"...provides a remarkably broad overview of its [ genomics'] implications in various sectors of the society, ranging from questions on how clinical genetics services may contribute to the empowerment of patients to questions about economic assessment of these genetic services and biotechnological applications." --European Journal of Human Genetics

Muu info

Lucidly and expansively addresses the myriad of bioethical, legal, cultural, and socio-economic issues deriving from advances in genome biology and genomic medicine
List of Contributors
xiii
Foreword xvii
Preface: Introduction to Social and Economic Genomics xix
Acknowledgments xxiii
1 Personal Genomics and its Sociotechnical Transformations
1(20)
Richard Tutton
Introduction
1(2)
Personal Genomics and its Sociotechnical Expectations
3(4)
Personal Genomics in Perspective
7(7)
Personal Genomics and the Extent of Sociotechnical Change
14(3)
Conclusion
17(1)
Note
17(1)
References
17(4)
2 Genetics, Genomics, and Society: Challenges and Choices
21(18)
Angus Clarke
Introduction
21(3)
Health Care and the Challenge of Common, Complex Disease
24(2)
Genome Data: Challenges of Interpretation, Disclosure, and Data Storage
26(4)
Reproduction
30(3)
Family Communication About Genetics
33(2)
The Future of Genetics Research in Medicine
35(1)
Conclusion
35(1)
References
36(3)
3 Genomics and Patient Empowerment
39(30)
Marion McAllister
Introduction
39(1)
What Are the Benefits of Attending a Clinical Genetics Service (CGS)?
40(1)
Educational Impact of Genetic Counseling
41(2)
Psychological Impact of Genetic Counseling and Testing
43(1)
Are There Patient Benefits to Be Derived from Using a CGS?
44(10)
Measuring Patient Empowerment in CGS
54(3)
Does Attendance at CGS Empower Patients?
57(1)
Patient Empowerment: The Broader Context
57(1)
Patient Empowerment and Genetic Conditions
58(1)
Genomic Information, Health Literacy, Health Behavior, and Patient Empowerment
59(4)
Conclusion
63(1)
References
64(5)
4 The Expanding Scope of Gen-Ethics
69(14)
Ruth Chadwick
Introduction---Genomics and Bioethics
69(1)
Issues in Clinical Genetics: Genetic Testing and Counseling
70(2)
Screening
72(1)
Gene Therapy
73(1)
The HGP and Genomics
73(1)
Biobanks
74(3)
Personalized Medicine
77(1)
"Recreational" and Behavioral Genomics
78(1)
Genomics and Identity
79(1)
International Perspectives and Cultural Issues
80(1)
Conclusion
81(1)
References
81(2)
5 Health Economic Perspectives of Genomics
83(36)
Sarah Wordsworth
James Buchanan
Adrian Towse
Introduction
84(1)
What Is Health Economics
85(4)
Applying Economic Evaluation Approaches to Genomics
89(9)
Challenges for Economic Evaluation
98(14)
Conclusions
112(1)
References
112(7)
6 Legal Aspects of Health Applications of Genomics
119(16)
Ellen Wright Clayton
Ma'n Zawati
Introduction
119(1)
Framing the Issues
120(1)
The United States
120(5)
Comparative Issues in Quebec
125(5)
Conclusions Focusing on What This Will Mean for Next Generation Sequencing
130(1)
References
131(4)
7 Genomics, Patents, and Human Rights
135(12)
Michiel Korthals
Introduction: Genomics Technologies and Legal Protection
135(1)
Human Rights to Health, to Food, and to Scientific Participation
136(2)
How to Interpret Human Rights?
138(1)
The Structure of Genomics
138(1)
Property Rights Regarding Intangible Objects
139(2)
Objections to Patenting from a Human Rights' Perspective
141(3)
Alternatives for the Current IPR Regime: Open Source, Open Access, Food Impact Fund
144(1)
Summary
145(1)
References
145(2)
8 Teaching Genetics and Genomics for Social and Lay Professionals
147(18)
Sandie Gay
Michelle Bishop
Stuart Sutherland
Introduction
147(1)
Basic Teaching Skills
148(1)
Section 1 Practical Advice for Teaching and Learning About Genetics and Genomics
148(10)
Section 2 Key Genetic and Genomic Concepts to Cover in a Teaching Session
158(5)
Summary
163(1)
References
163(2)
9 Engaging and Empowering Public and Professionals in Genomics
165(28)
Maggie Kirk
Rachel Iredale
Rhian Morgan
Emma Tonkin
Introduction
166(1)
Section 1 Let's Talk About Genes and I Don't Mean Trousers: Children's Views on Genomics and Cancer
167(1)
Methodology
167(2)
Results
169(3)
Family History and Inheritance: Group Activities
172(3)
The Let's Talk About Genes Rap
175(2)
Engaging Children: Was it Successful?
177(1)
Section 2 Stories as an Approach to Engaging and Empowering People
178(13)
Conclusion
191(1)
References
191(2)
10 The "Life Costs" of Living with Rare Genetic Diseases
193(14)
Koichi Mikami
Alastair Kent
Gill Haddow
Introduction: The Life Costs of Rare Diseases?
193(2)
The Challenge of "Adverse Economies of Scale"
195(3)
Case Study 1---Huntington's Disease
198(3)
Case Study 2---Phenylketonuria
201(2)
Conclusion: Toward a More Balanced Approach
203(1)
References
204(3)
11 Genomics and the Bioeconomy: Opportunities to Meet Global Challenges
207(32)
Gerardo Jimenez-Sanchez
Jim Philp
Introduction
208(1)
The Grand Challenges Ecosystem
209(2)
Food Production in a Bioeconomy
211(10)
Industrial Biotechnology---Replacing the Oil Barrel
221(10)
Challenges on Many Fronts
231(1)
Concluding Remarks
232(1)
Acknowledgments
233(1)
References
233(6)
12 Socioeconomic Outcomes of Genomics in the Developing World
239(20)
Dhavendra Kumar
Introduction
240(2)
Harnessing Genomics for Developing Countries
242(9)
Biotechnology and Bioindustry
251(1)
Education and Training
252(1)
Research and Development
252(4)
Acknowledgments
256(1)
References
257(2)
13 Roles of Genomics in Addressing Global Food Security
259(12)
Denis J. Murphy
Introduction
259(1)
The Challenge of Global Food Security
260(2)
The Impact of Climate Change
262(1)
So, How Can Genomics Help?
263(1)
What Are the Key Future Targets for Genomics-Assisted Crop Improvement?
264(3)
Impacts of Genomics in Developing Countries
267(1)
Conclusions
268(1)
References
268(3)
14 Genomics and Traditional Indian Ayurvedic Medicine
271(22)
Mitali Mukerji
Bhavana Prasher
Introduction
271(1)
Need for a Paradigm Shift in Modern Health Care Practice
272(2)
Advent of Genomics in Personalized Medicine
274(1)
Ayurveda: Ancient Indian System of Medicine
275(6)
Getting Ayurveda to Mainstream
281(4)
Ayurgenomics: Approach for Integration of Ayurveda into Current Medical Practice
285(3)
Summary
288(1)
Acknowledgments
288(1)
References
289(4)
15 Genomics and Traditional Chinese Medicine
293(16)
Wei Wang
Introduction
293(1)
Genomics, Genomic Medicine, and Personalized Medicine
294(1)
Key Fundamentals of TCM Concepts
294(6)
Application of Genomics Technologies in the Authentication of TCM and Acupuncture
300(5)
Conclusions and Outlook
305(1)
References
306(3)
16 Human Genetics and Genomics and Sociocultural Beliefs and Practices in South Africa
309(12)
Himla Soodyall
Jennifer G. R. Kromberg
Introduction
309(1)
Genetic Services in South Africa
310(1)
Understanding Culture in the Context of Health
310(3)
Sociocultural Issues, Genetic Disorders, and Other Health Issues
313(3)
Oral Histories and Belief Systems Associated with Origins
316(1)
Conclusions
317(1)
Acronyms
318(1)
References
318(3)
17 Genomics and Spirituality
321(14)
Michael Ruse
Introduction
321(1)
Genomics
321(1)
The Life---the Pagan Perspective
322(2)
Variation and Evolution
324(1)
The Human Race(s) and Population Variation
325(3)
Scope of Genomics---Reductionism and Emergentism
328(1)
The Future---Continuing Genomics
328(4)
Conclusions
332(1)
References
332(3)
18 The Sociodemographic and Economic Correlates of Consanguineous Marriages in Highly Consanguineous Populations
335(28)
Hanan Hamamy
Sura Alwan
Introduction
335(3)
Secular Trends in Consanguineous Marriages
338(2)
What Will Be the Future Trend of Consanguinity in Highly Consanguineous Populations?
340(1)
Health Impact on Offspring of Consanguineous Parents
341(1)
Why Are Consanguineous Marriages Preferred and Respected in Some Populations?
342(2)
Does Consanguinity Minimize Intimate Partner Violence?
344(2)
Consanguinity and Divorce
346(1)
Consanguinity and Civil Unrest
346(1)
Consanguinity and Spouses Educational Levels
347(2)
Consanguinity in Relation to Spouse Employment Status
349(2)
Age at Marriage and Fertility Rate in Consanguineous Marriages
351(2)
Economic Drivers for Consanguineous Marriages
353(2)
Socioeconomic Status and Consanguinity
355(1)
Consanguinity and Religion
355(1)
Consanguinity as Related to Ethnicity and Urban/Rural Settings
356(1)
Conclusions
357(1)
References
358(5)
19 The International Law and Regulation of Medical Genetics and Genomics
363(26)
Atina Krajewska
Introduction
363(3)
Main Challenges in the Field of International Biomedical Law
366(17)
Conclusions
383(1)
References
384(5)
Glossary: "Genomics and Society" 389(12)
Index 401
Professor Kumar has considerable previous experience in writing and editing books and journals related to genetics and genomics. His books include Genomics and Clinical Medicine and Genomics and Health in the Developing World. He founded and leads the new open access journal Applied and Translational Genomics, published by Elsevier. He has published 40 articles in the journals literature. Professor Dhavendra Kumar is a Visiting Professor, Genomic Policy Unit, Faculty of Life Sciences and Education, The University of South Wales and Consultant in Clinical Genetics at the University Hospital of Wales, Institute of Medical Genetics, Cardiff University, Cardiff, United Kingdom. He is one of the Consultants for the All Wales Medical Genetics Service and the lead Clinician for Clinical Cardiovascular Genetics. After qualifying in Medicine from the King Georges Medical College, University of Lucknow, India, he completed postgraduate training in Pediatrics with an MD. Since 1980 he has pursued a career in Medical Genetics in the UK. In 1990 he became a Diplomate of the American Board of Medical Genetics. He is a Fellow of the American College of Medical Genetics (FACMG) and as well as Royal Colleges of Physicians (FRCP-London and FRCP-Ireland) and Pediatrics and Child Health (FRCPCH-UK).

In 2015, he was conferred with the higher degree of DSc by his Alma Mater, King Georges Medical University, Lucknow (UP, India) based on his life-time contributions and achievements to genetic and genomic applications in medicine and health.

Ruth Chadwick is Distinguished Research Professor and Director of the ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social Aspects of Genomics (Cesagen), at Cardiff University, UK and Link Chair between Cardiff Law School and the School of English, Communication and Philosophy (ENCAP). Professor Chadwick has coordinated a number of projects funded by the European Commission, including the EUROSCREEN projects and co-edits the journal Bioethics and the online journal Genomics, Society and Policy. She is Chair of the Human Genome Organisation Committee on Ethics, Law and Society, and has served as a member of several policy-making and advisory bodies, including the Panel of Eminent Ethical Experts of the Food and Agriculture Organisation of the United Nations (FAO), and the UK Advisory Committee on Novel Foods and Processes (ACNFP). She was editor-in-chief of the first edition of the award winning Encyclopedia of Applied Ethics. She is an Academician of the Academy of Social Sciences and a Fellow of the Hastings Center, New York; of the Royal Society of Arts; and of the Royal Society of Medicine. In 2005 she was the winner of the World Technology Network Award for Ethics for her work on the relationship between scientific developments and ethical frameworks. She graduated with first class Honours Literae Humaniores (Philosophy and Greek and Latin Literature) from the University of Oxford, and then went on to take the B.Phil. in Philosophy. She was awarded her D.Phil. on The Ethics of Eugenics and Genetic Engineering, supervised by Jonathan Glover. She completed an LL.B. (externally) at the University of London. She held positions at the University of Liverpool, St. Martins College, Lancaster, and University of Wales, Cardiff, before taking up her post as Professor of Moral Philosophy at the University of Central Lancashire. In June 1995 she became Head of the Centre for Professional Ethics at the University, a position she still holds. She has coordinated a number of multinational and multidisciplinary research projects funded by the European Union: Ethical Implications of Human Genome Analysis for Clinical Practice in Medical Genetics, with Special Reference to Genetic Counselling (1992); EUROSCREEN: Genetic Screening--Ethical and Philosophical Perspectives (19941996); BIOCULT: Cultural and Social Objections to Biotechnology, with Special Reference to the View of Young People (1995); EUROSCREEN 2: Genetic Screening--Towards Community Policy on Insurance, Commercialisation and Public Awareness (19961999). Her publications include the four volume edited collection, Kant: Critical Assessments (1992); Ethics, Reproduction and Genetic Control (Revised Edition, 1992);and a large number of papers in learned journals. She is joint series editor of the Routledge series on Professional Ethics. Professor Chadwick is secretary of the International Association of Bioethics and a member of the HUGO Ethics committee, the National Committee for Philosophy and the British Medical Association Steering Group on Human Genetics.