Ethical, Legal and Social Issues (GENC5006)


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


7 x 1.5h lectures/tutorials/reflective practice by faculty/guest lecturers. 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.
NHMRC Guidelines (2010) Medical Genetic Testing - Information for health professionals
NHMRC Guidelines (2009) Use and disclosure of genetic information to a patient's genetic relatives under section 95AA of the Privacy Act 1988 (Cth) Guidelines for health practitioners in the private sector
NSW Health (1998) Ethical code governing the provision of genetics services
Ian Kerridge, Michael Lowe and Cameron Stewart. Ethics and the Law for the health professions (4th edition). The Federation Press 2013

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Study this unit outside a degree

Non-award/non-degree study

If you wish to undertake one or more units of study (subjects) for your own interest but not towards a degree, you may enrol in single units as a non-award student.

Cross-institutional study

If you are from another Australian tertiary institution you may be permitted to underake cross-institutional study in one or more units of study at the University of Sydney.