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?
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 KÄÄRIÄINEN and Ilona AUTTI-RÄMÖ; 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 Canada
Denise AVARD; Implementation of Population Screening
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 Policy
Darren SHICKLE; Public Opinion, Consent and Population Genetic Biobanks
Timothy CAULFIELD and Nola M. RIES ; Challenges for Public Health Genomics – the Public Health Perspective on Genome-based Knowledge and Technologies
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
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, Céline DURAND and Isabelle GANACHE; Meeting of Minds: A European Citizen’s Deliberation onEmerging Technologies
Marie-Hélène MOUNEYRAT; Developments in Genomics: Engaging Young People
Caroline HURREN; Interdisciplinary Graduate Training in Public Health Genetics at the University of Washington
Melissa A. AUSTIN.