Ethical, Legal and Social Issues (GENC5006)
UNIT OF STUDY
The Unit begins with an examination of ethical principles and their application in health and genetics in particular in both research and clinical settings. Students will be provided with an overview of the current social, cultural, legal and ethical issues generated by the diagnosis or identification of risk for a genetic condition including privacy at the family and wider community levels, ownership of genetic information, informed consent, genetic testing of children, professionalism and paternalism, access and equity to services, gene patenting, national and jurisdictional laws, regulations and guidelines governing genetics services delivery and practice and research ethics. The evidence base for genetic discrimination will be examined with a focus on the life insurance industry and the polices and implications for genetic counselling practice and research participation. Additionally, the associated psychosocial impact of new genetics technologies at both the individual and family levels will be explored, using preimplantation genetic diagnosis as the paradigm. At the societal level, the students will explore the issues associated with the developments and establishment of biobanks and genetic registers, the storage of genetic information and its access, the implementation of public health genetics programs and non-medical applications of genetic technologies including kinship testing and sport.
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Further unit of study information
8 x 1.5h lectures/tutorials. SMS-Northern, Kolling Institute, Royal North Shore Hospital, St Leonards
1500 word essay (50%), community placement report and reflection (50%)
Australian Law Reform Commission (2003) Essentially Yours. The Protection of Human Genetic Information. Report 96. http://www.alrc.gov.au NHMRC Guidelines (2010) Medical Genetic Testing - Information for health professionals www.nhmrc.gov.au NHMRC Guideli
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