NSW Genetic Health Guidelines: Appendices



Australian Health Ethics Committee


Australian Law reform Commission

Amending Act

Health Legislation Amendment Act 2012 (NSW)


Australian Research Council


Australian Vice-Chancellors’ Committee


general practitioner


Human Genetics Advisory Committee


Health Privacy Principle


Health Records and Information Privacy Act 2002 (NSW)


Information Protection Principle


National Health and Medical Research Council  


Privacy and Personal Information Protection Act 1998 (NSW)


ALRC (2003) Essentially Yours: The Protection of Human Genetic Information in Australia. Australian Law Reform Commission.

AMA (2006) AMA Code of Ethics. Australian Medical Association.

Bernat JL (ed) (2008) Ethical Issues in Neurology. Third edition. Wolters Kluwer Lippincott Williams & Wilkins.

Clarke A, Richards M, Kerzin-Storrar L et al (2005) Genetic professionals’ reports of nondisclosure of genetic risk information within families. Eur J Human Gen 13: 556–62.

Davey A, Newson A, O’Leary P (2006) Communication of genetic information within families: the case for familial comity. J Bioethical Inquiry 3: 160–66.

Dugan RB, Wiesner GL, Juengst ET et al (2003) Duty to warn at-risk relatives for genetic disease: genetic counselors’ clinical experience. Am J Med Gen 119C: 27–34.

Evans JP, Skrzynia C, Burke W (2001) The complexities of predictive genetic testing BMJ 322:1052–1056.

Falk MJ, Dugan RB, O’Riordan MA et al (2003) Medical geneticists’ duty to warn at-risk relatives for genetic disease. Am J Med Gen 120A: 374–80.

Forrest LE, Delatycki MB, Skene L et al (2007) Communicating genetic information in families — a review of guidelines and position papers. Eur J Human Gen 15: 612–18.

Gold JL (2004) To warn or not to warn? genetic information, families, and physician liability. MJM 8:

Goddard B, Hurlimann T, Letendre M et al (2006) Guidelines for disclosing genetic information to family members: From development to use. Familial Cancer 5: 103–16

Hennig BL (2009) Talking to Kids About Huntington Disease. talkingtokidsabouthd.com (link no longer available) Accessed 11 February 2009.

Hudson KL (2007) Prohibiting genetic discrimination. New Engl J Med 356: 2021–23.

Iles J (ed) (2006) Neuroethics: Defining the Issues in Theory, Practice and Policy. Oxford University Press, Stanford.

Kohut K, Manno M, Gallinger S et al (2007) Should healthcare providers have a duty to warn family members of individuals with an HNPCC-causing mutation? A survey of patients from the Ontario Familial Colon Cancer Registry. J Med Genet 44: 404–07.

Lucassen A & Parker M (2004) Confidentiality and serious harm in genetics - preserving the confidentiality of one patient and preventing harm to relatives. Eur J Hum Genet 12: 93–97.

Lucassen A, Parker M, Wheeler R (2006) Implications of data protection legislation for family history. BMJ 332: 299–301.

Malpas P (2005) The right to remain in ignorance about genetic information — can such a right be defended in the name of autonomy? NZ Med J 118: U1611.

McCusker EA (2003) The specialist neurologist and the "new genetics". MJA: 179(3): 167–69.

NHMRC (2003) Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research. Commonwealth of Australia

NHMRC (2004a) Communicating with Patients. Advice for Medical Practitioners. Commonwealth of Australia.

NHMRC (2004b) General Guidelines for Medical Practitioners on Providing Information to Patients. Commonwealth of Australia.

NHMRC (2005) Strengthening Cardiac Rehabilitation and Secondary Prevention in Aboriginal and Torres Strait Islander Peoples. Commonwealth of Australia.

NHMRC (2006a) Making Decisions about Test and Treatments: Principles for Better Communication between Healthcare Consumers and Healthcare Professionals. Commonwealth of Australia.

NHMRC (2006b) Cultural Competency in Health: A Guide for Policy, Partnerships and Participation. Commonwealth of Australia.

NHMRC (2006c) Keeping Research on Track: a guide for Aboriginal and Torres Strait Islander peoples about health research ethics. Commonwealth of Australia.

NHMRC (2007a) Ethical Guidelines on the Use of Assisted Reproductive Technology in Clinical Practice and Research. Commonwealth of Australia.

NHMRC, ARC, AVCC (2007b) National Statement on Ethical Conduct in Human Research. Developed jointly by the National Health and Medical Research Council, Australian Research Council and Australian Vice-Chancellors’ Committee. Commonwealth of Australia.

Otlowski MF (2007) Disclosure of genetic information to at-risk relatives: recent amendments to the Privacy Act 1988 (Cwlth). MJA 187: 398–99.

Parker M & Lucassen AM (2004) Genetic information: a joint account? BMJ 329: 165–67.

Petrila J (2001) genetic risk: the new frontier. Behav Sci Law 19: 405–21.

Royal College of Physicians of London (2006) Consent and Confidentiality in Genetic Practice. Guidance on Genetic Testing and Sharing Genetic information. A Report of the Joint Committee on Medical Genetics. Royal College of Physicians of London, Royal College of Pathologists, The British Society for Human Genetics, London.

Soleymani Lehmann L, Weeks JC, Klar N et al (2000) Disclosure of familial genetic information: perceptions of the duty to inform. Am J Med 109: 705–11.

Suthers GK, Armstrong J, McCormack J et al (2006) Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet 43: 665–70.

Swartling U, Eriksson S, Ludvigsson J et al (2007) Concern, pressure and lack of knowledge affect choice of not wanting to know high-risk status. Eur J Human Gen 14: 556–62.

Wagner Costalas J, Itzen M, Manick J et al (2003) Communication of BRCA1 and BRCA2 results to at-risk relatives: a cancer risk assessment program's experience. Am J Med Genet C Semin Med Genet 119: 11–18.

Wilson J (2005) To know or not to know? Genetic ignorance, autonomy and paternalism. Bioethics 19: 492–504.

1. Appendix 1: Health Privacy Principles