Patient care in the "new genetics" era encompasses not only the diagnosis of a genetic condition or risk, but also managing the psychosocial, familial and ethical sequelae.
Partnerships between the medical professional and expert clinical genetics services, support groups, registries and genetics education services provide a framework for this management.
More than 750 Australian support groups assist individuals and families with genetic conditions through contact with peers, information and education resources for patients and professionals, practical advice about coping and advocacy.
- 1. Metcalfe S, Hurworth R, Newstead J, Robins R. Needs assessment study of genetics education for general practitioners in Australia. Genet Med 2002; 4: 71-77.
- 2. Barlow-Stewart K, editor. The genetics resource book: directory of genetics services, support groups and information for Australia and New Zealand. Sydney: Centre for Genetics Education, 2002.
- 3. Boyle F, Posner N, Bush R, et al. Effective collaboration between general practice and self-help organisations. Report to General Practice Evaluation Program. Canberra: Commonwealth Department of Health and Aged Care, 2002.
- 4. National Health and Medical Research Council. Guidelines for genetic registers and associated use of genetic material. Canberra: NHMRC, 1999.
- 5. Barlow-Stewart K. New genetics: benefits and burdens for families. Reform (ALRC journal) 2001; (79): 14-18.
- 6. Petrie D. Picking up the pieces. In: O'Sullivan G, Sharman E, Short S, editors. Goodbye normal gene. Sydney: Pluto Press, 1999: 89-92.
- 7. O'Reilly A. The consumer's perspective. In: Trent RJ, editor. Handbook of prenatal diagnosis. Cambridge: Cambridge University Press, 1995: 230-247.
- 8. When your unborn baby has a problem. Sydney: Centre for Genetics Education, 2000.
- 9. Katz Rothman B. The tentative pregnancy. New York: Penguin, 1986.
- 10. Burnett L, Proos A, Chesher D, et al. The Tay–Sachs disease prevention program in Australia: Sydney Pilot Study. Med J Aust 1995; 163: 298-300.
- 11. Australian Huntington Disease Association [website]. Available at: http://www.ahda.asn.au/ (accessed Mar 2003).
- 12. Michie S, Weinman J, Miller J, et al. Predictive genetic testing: high risk expectations in the face of low risk information. J Behav Med 2002; 25: 33-50.
- 13. McGowan R. Beyond the disorder: one parent's reflection on genetic counselling. J Med Ethics 1999; 25: 195-199.
- 14. Haan EA. The clinical geneticist and the "new genetics". Med J Aust 2003; 178: 458-462. <eMJA full text>
- 15. Australian Law Reform Commission. Protection of human genetic information. Discussion paper 66. Canberra: Commonwealth of Australia, 2002; 532-534. Available at: http://www.alrc.gov.au/inquiries/current/genetic/DP66.htm (accessed Mar 2003).
Publication of your online response is subject to the Medical Journal of Australia's editorial discretion. You will be notified by email within five working days should your response be accepted.