Published online by Cambridge University Press: 19 January 2010
‘Policy’ is defined by the Collins English Dictionary as ‘a plan of action adopted by a person, group or government’. In the context of this book, the scope of ‘policy’ is very broad: it encompasses the course of action adopted by society in all those areas that affect the impact of advances in genetics on health services and health care. In most cases policy on a particular issue is not static but is constantly being reassessed and adjusted in the light of new developments or social attitudes. Some areas are so new that no current policy exists and a number of options are under consideration. Policy for the application of genetics in health services does not develop in isolation but within a much broader national and international context. Nor, in the modern world, can policy be determined in a top-down, directive way, by government departments insulated from external influences.
In this chapter, we first outline how government policy for genetics is developed and implemented in the UK and describe the current advisory and regulatory framework. We then discuss the international ‘climate’ for policy on genetics.
The middle sections of the chapter deal with the development of the policy framework in the UK in some key areas: reproductive decision-making, consent to genetic testing and analysis, privacy and confidentiality of genetic information, protection against unfair discrimination, regulation of the availability of genetic tests, pharmacogenetics, regulation of gene-based and cellular therapies, clinical trials and intellectual property rights in the bioscience sector.
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