Genomics and public health : legal and socio-ethical perspectives

著者

書誌事項

Genomics and public health : legal and socio-ethical perspectives

edited by Bartha Maria Knoppers

Martinus Nijhoff, c2007

タイトル別名

Genomics & public health

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内容説明・目次

内容説明

When genomics and public health are integrated into society, it will create as many responsibilities as rights for citizens, researchers, and decision makers. Indeed, the expression of genetic risk factors in both common and infectious diseases is of great interest to public health. Policy development in this area then needs to tackle crucial themes such as: research and its application to public health and genomic medicine, the authority of the state, the right to privacy, and the roles and responsibilities of citizens and the State. Considering the current fears of a world-wide pandemic, this book is a timely and insightful exploration of both research possibilities and the role of the state. It will help to understand the limits of possible state access to biobanks and data. It examines the issue of the possible use of newborn screening programmes by public health authorities. It also attempts to understand the protection of individual privacy and the public interest in the promotion of health and the prevention of disease. Moreover, do citizens have a say? Will public attitudes be different towards research in public health genomics compared to genetic testing?

目次

  • Acknowledgements
  • PART I POPULATION SCREENING: ISSUES, REALITIES AND POSSIBILITIES: A - Introduction: Expansion of Screening J. Gerard LOEBER
  • Expansion of Newborn Screening: Current Achievements and New Prospects Bridget WILCKEN
  • Screening Newborns for Genetic Susceptibility: What's theHarm?Nikki KERRUISH
  • Newborn Screening Expansion: Massachusetts ResearchModels Encompass Public Health Service Responsibility Anne Marie COMEAU Carriers Detected by Neonatal Screening: A ClinicalGeneticist's View Helena KAEAERIAEINEN and Ilona AUTTI-RAEMOE
  • Systematic Neonatal Screening and Carrier Detection: Lessons from Sickle Cell Disease and Cystic Fibrosis Screening in France Jean-Louis DHONDT
  • Carrier Detection in Newborns: Should it be Discovered?Should it be Disclosed? Lessons from Sickle Cell Anemia and Cystic Fibrosis Screening in the United States Lainie FRIEDMAN ROSS, CAROLYN and MATTHEW BUCKSBAUM PROFESSOR B -Introduction: Newborn Screening: Storage and Access for Research Ellen WRIGHT CLAYTON
  • The Danish Newborn Screening Biobank in Practice and Research: Revised Biobank Regulations Bent NORGAARD-PEDERSEN and David M. HOUGAARD
  • Research and Public Health Surveillance Using Newborn Bloodspots in CanadaDenise AVARD
  • Implementation of Population Screening Jane HALLIDAY
  • PART II BALANCING INTERESTS IN PUBLIC HEALTH GENOMICS Introduction: Of Genomics and Public Health: Building Public "Goods"?Bartha Maria KNOPPERS
  • Privacy Issues in Public Health Genomics Mark ROTHSTEIN and Herbert F. BOEHL
  • Balancing Private and Public Interests in PolicyDarren SHICKLE
  • Public Opinion, Consent and Population Genetic BiobanksTimothy CAULFIELD and Nola M. RIES
  • Challenges for Public Health Genomics - the Public Health Perspective on Genome-based Knowledge and TechnologiesAngela BRAND
  • PART III GENOMICS AND PUBLIC HEALTH: CURRENT APPROACHES AND FUTURE PERSPECTIVES Introduction: The Role of International Stakeholders in Genomics and Public Health Andrea BOGGIO
  • From Genomic Research to Public Health Practice:International Policy Implications Stuart HOGARTH
  • GRaPH Int: An International Network for Public Health Genomics Alison STEWART, Mohamed KARMALI, Ron ZIMMERN
  • The Role of International Stakeholders Patients as Partners Alastair KENT
  • Genomics and Modes of Democratic Dialogue: An Analysis of Two Projects Hubert DOUCET, Marianne DION-LABRIE, Celine DURAND and Isabelle GANACHE
  • Meeting of Minds: A European Citizen's Deliberation onEmerging Technologies Marie-Helene MOUNEYRAT
  • Developments in Genomics: Engaging Young People Caroline HURREN
  • Interdisciplinary Graduate Training in Public Health Genetics at the University of WashingtonMelissa A. AUSTIN.

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