Genomics and Public Health: Legal and Socio-Ethical Perspectives
Bartha Maria Knoppers
Martinus Nijhoff Publishers, 2007 - Law - 329 pages
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?
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assessment benefit biobank carrier status challenges child citizens conference clinical validity concerns Cystic Fibrosis databases DBSS detection Diabetes diagnosis disclosure disease disorders effective Ethical Committee European evaluation example experts Factor V Leiden factors funding future gene genetic counselling genetic information genetic risk Genetic Screening genetic susceptibility testing genetic testing genome-based knowledge genomic research genomics and public healthcare hemochromatosis Human Genetics identify implementation individuals infants informed consent interest interventions issues metabolic mutations National Neonatal Screening Network newborn blood spots newborn screening programme parents participants patients PEDIATRICS phenylketonuria population genetic population health population screening potential practice pre-market prevention professionals projects public health genomics regulation relevant samples scientific Screening for Cystic sickle cell social solidarity specific stakeholder involvement storage strategies studies supra note surveillance Tandem Mass Spectrometry technologies Wellcome Trust