The Unit begins with a review 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 national and jurisdictional laws, regulations and guidelines governing genetics services delivery and practice 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, and non-medical applications of genetic technologies including kinship testing and sport.
7 x 1.5h lectures/tutorials/reflective practice and integrated 2 x 1.5hr Problem based Learning (PBL) sessions by faculty/guest lecturers. SMS-Northern, Kolling Institute, Royal North Shore Hospital, St Leonards.
Group worksheet and presentation on ethical cases in cancer (25%) and an 2000 wd essay (75%)
Kerridge I, Lowe M and Stewart C (2013) Ethics and law for the health professions. 4th Edition Federation Press; Gaff, CL and Bylund, CL (Eds) (2010) Family Communication about Genetics: Theory and practice. Oxford University Press, UK; Australian Law Reform Commission (2003) Essentially Yours. The Protection of Human Genetic Information. Report 96. http://www.alrc.gov.au; 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, https://www.nhmrc.gov.au/guidelines-publications/pr3; NSW Health Guidelines (2014) Use and disclosure of genetic information to a patient's genetic relatives: Guidelines for organisations in NSW. http://www.ipc.nsw.gov.au/nsw-genetic-health-guidelines; Australasian Society of Genetic Counsellors Code of Ethics (2008), https://www.hgsa.org.au/documents/item/22; Scheider et al (2006) Ethical Issues in Cancer Genetics: 1) Whose Information Is it? Journal of Genetic Counselling Vol. 15, No. 6 Dec 2006 DOI: 10.1007/s10897-006-9053-4.