Genomics and Society

Ethical, Legal, Cultural and Socioeconomic Implications

1st Edition - October 29, 2015
Editors: Dhavendra Kumar, Ruth Chadwick
Language: English
Hardback ISBN:
9 7 8 - 0 - 1 2 - 4 2 0 1 9 5 - 8
eBook ISBN:
9 7 8 - 0 - 1 2 - 7 9 9 9 2 1 - 0

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 prioritie… Read more

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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.

Dedication
List of Contributors
Foreword
Preface: Introduction to Social and Economic Genomics
Acknowledgments
Chapter 1. Personal Genomics and its Sociotechnical Transformations
- Abstract
- Introduction
- Personal Genomics and its Sociotechnical Expectations
- Personal Genomics in Perspective
- Personal Genomics and the Extent of Sociotechnical Change
- Conclusion
- Note
- References
Chapter 2. Genetics, Genomics, and Society: Challenges and Choices
- Abstract
- Introduction
- Health Care and the Challenge of Common, Complex Disease
- Genome Data: Challenges of Interpretation, Disclosure, and Data Storage
- Reproduction
- Family Communication About Genetics
- The Future of Genetics Research in Medicine
- Conclusion
- References
Chapter 3. Genomics and Patient Empowerment
- Abstract
- Introduction
- What Are the Benefits of Attending a Clinical Genetics Service (CGS)?
- Educational Impact of Genetic Counseling
- Psychological Impact of Genetic Counseling and Testing
- Are There Patient Benefits to Be Derived from Using a CGS?
- Measuring Patient Empowerment in CGS
- Does Attendance at CGS Empower Patients?
- Patient Empowerment: The Broader Context
- Patient Empowerment and Genetic Conditions
- Genomic Information, Health Literacy, Health Behavior, and Patient Empowerment
- Conclusion
- References
Chapter 4. The Expanding Scope of Gen-Ethics
- Abstract
- Introduction—Genomics and Bioethics
- Issues in Clinical Genetics: Genetic Testing and Counseling
- Screening
- Gene Therapy
- The HGP and Genomics
- Biobanks
- Personalized Medicine
- “Recreational” and Behavioral Genomics
- Genomics and Identity
- International Perspectives and Cultural Issues
- Conclusion
- References
Chapter 5. Health Economic Perspectives of Genomics
- Abstract
- Introduction
- What Is Health Economics
- Applying Economic Evaluation Approaches to Genomics
- Challenges for Economic Evaluation
- Conclusions
- References
Chapter 6. Legal Aspects of Health Applications of Genomics
- Abstract
- Introduction
- Framing the Issues
- The United States
- Comparative Issues in Quebec
- Conclusions Focusing on What This Will Mean for Next Generation Sequencing
- References
Chapter 7. Genomics, Patents, and Human Rights
- Abstract
- Introduction: Genomics Technologies and Legal Protection
- Human Rights to Health, to Food, and to Scientific Participation
- How to Interpret Human Rights?
- The Structure of Genomics
- Property Rights Regarding Intangible Objects
- Objections to Patenting from a Human Rights’ Perspective
- Alternatives for the Current IPR Regime: Open Source, Open Access, Food Impact Fund
- Summary
- References
Chapter 8. Teaching Genetics and Genomics for Social and Lay Professionals
- Abstract
- Introduction
- Basic Teaching Skills
- Section 1—Practical Advice for Teaching and Learning About Genetics and Genomics
- Section 2—Key Genetic and Genomic Concepts to Cover in a Teaching Session
- Summary
- References
Chapter 9. Engaging and Empowering Public and Professionals in Genomics
- Abstract
- Introduction
- Section 1—Let’s Talk About Genes and I Don’t Mean Trousers: Children’s Views on Genomics and Cancer
- Methodology
- Results
- Family History and Inheritance: Group Activities
- The Let’s Talk About Genes Rap
- Engaging Children: Was it Successful?
- Section 2—Stories as an Approach to Engaging and Empowering People
- Conclusion
- References
Chapter 10. The “Life Costs” of Living with Rare Genetic Diseases
- Abstract
- Introduction: The Life Costs of Rare Diseases?
- The Challenge of “Adverse Economies of Scale”
- Case Study 1—Huntington’s Disease
- Case Study 2—Phenylketonuria
- Conclusion: Toward a More Balanced Approach
- References
Chapter 11. Genomics and the Bioeconomy: Opportunities to Meet Global Challenges
- Abstract
- Introduction
- The Grand Challenges Ecosystem
- Food Production in a Bioeconomy
- Industrial Biotechnology—Replacing the Oil Barrel
- Challenges on Many Fronts
- Concluding Remarks
- Acknowledgments
- References
Chapter 12. Socioeconomic Outcomes of Genomics in the Developing World
- Abstract
- Introduction
- Harnessing Genomics for Developing Countries
- Biotechnology and Bioindustry
- Education and Training
- Research and Development
- Acknowledgments
- References
Chapter 13. Roles of Genomics in Addressing Global Food Security
- Abstract
- Introduction
- The Challenge of Global Food Security
- The Impact of Climate Change
- So, How Can Genomics Help?
- What Are the Key Future Targets for Genomics-Assisted Crop Improvement?
- Impacts of Genomics in Developing Countries
- Conclusions
- References
Chapter 14. Genomics and Traditional Indian Ayurvedic Medicine
- Abstract
- Introduction
- Need for a Paradigm Shift in Modern Health Care Practice
- Advent of Genomics in Personalized Medicine
- Ayurveda: Ancient Indian System of Medicine
- Getting Ayurveda to Mainstream
- Ayurgenomics: Approach for Integration of Ayurveda into Current Medical Practice
- Summary
- Acknowledgments
- References
Chapter 15. Genomics and Traditional Chinese Medicine
- Abstract
- Introduction
- Genomics, Genomic Medicine, and Personalized Medicine
- Key Fundamentals of TCM Concepts
- Application of Genomics Technologies in the Authentication of TCM and Acupuncture
- Conclusions and Outlook
- References
Chapter 16. Human Genetics and Genomics and Sociocultural Beliefs and Practices in South Africa
- Abstract
- Introduction
- Genetic Services in South Africa
- Understanding Culture in the Context of Health
- Sociocultural Issues, Genetic Disorders, and Other Health Issues
- Oral Histories and Belief Systems Associated with Origins
- Conclusions
- Acronyms
- References
Chapter 17. Genomics and Spirituality
- Abstract
- Introduction
- Genomics
- The Life—the Pagan Perspective
- Variation and Evolution
- The Human Race(s) and Population Variation
- Scope of Genomics—Reductionism and Emergentism
- The Future—Continuing Genomics
- Conclusions
- References
Chapter 18. The Sociodemographic and Economic Correlates of Consanguineous Marriages in Highly Consanguineous Populations
- Abstract
- Introduction
- Secular Trends in Consanguineous Marriages
- What Will Be the Future Trend of Consanguinity in Highly Consanguineous Populations?
- Health Impact on Offspring of Consanguineous Parents
- Why Are Consanguineous Marriages Preferred and Respected in Some Populations?
- Does Consanguinity Minimize Intimate Partner Violence?
- Consanguinity and Divorce
- Consanguinity and Civil Unrest
- Consanguinity and Spouses Educational Levels
- Consanguinity in Relation to Spouse Employment Status
- Age at Marriage and Fertility Rate in Consanguineous Marriages
- Economic Drivers for Consanguineous Marriages
- Socioeconomic Status and Consanguinity
- Consanguinity and Religion
- Consanguinity as Related to Ethnicity and Urban/Rural Settings
- Conclusions
- References
Chapter 19. The International Law and Regulation of Medical Genetics and Genomics
- Abstract
- Introduction
- Main Challenges in the Field of International Biomedical Law
- Conclusions
- References
Glossary: “Genomics and Society”
Index

Dhavendra Kumar

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 George’s 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 George’s Medical University, Lucknow (UP, India) based on his life-time contributions and achievements to genetic and genomic applications in medicine and health.

Affiliations and expertise

Honorary Clinical Professor, William Harvey Research Institute, Queen Mary University of London, UK

Ruth Chadwick

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 (1994–1996); 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 (1996–1999). 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.

Affiliations and expertise

Distinguished Research Professor and Director, ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social Aspects of Genomics (Cesagen), at Cardiff University, UK

Life Sciences

Physical Sciences & Engineering

Social Sciences & Humanities

Health