The mapping of the Human Genome has been touted as the beginning of a new scientific era. In medicine, it is expected to bring with it the widespread use of "predictive genetic testing" a term used to describe both pre-symptomatic testing and susceptibility testing on healthy individuals. In the last decade, several predictive genetic tests have been developed, primarily for single-gene disorders. While progress in understanding the precise role of genetics in more complex disorders has been slower than expected, research into the development of genetic tests for these disorders also continues.
Predictive genetic tests can be of significant value for patients and for public health strategies, but many ethical and legal issues are associated with the development and use of such tests. This book identifies and examines these issues and makes recommendations that will be of value to policy makers, regulators and law reformers. It is also a source of information for all those interested in the important ethical, social and legal issues raised by the new genetics.
This book focuses on the Canadian context, but numerous international and comparative policy reports, studies and scholarly articles that discuss many of the same issues are also canvassed. The issues analyzed include:
- why genetic information merits special attention
- the need to develop of a regulatory review structure to assess the validity
and value of genetic tests
- genetic discrimination and stigmatization, including in employment,
insurance, financial institutions, adoption, education and health services
- regulation of genetic research to protect the interests of human subjects
- access to genetic services, especially in a publicly-funded health care
- patents on genes, including Canada's obligations under international
patent law and the impact of patents on the research and clinical
environment and on clinical genetic testing services
- commercialization and direct marketing of genetic testing
- regulation and liability of genetic counsellors
- clinical issues, including consent, privacy, disclosure, testing of minors
and persons of reduced capacity
- storage of genetic material and information.