Skip to main content
SpringerLink
Log in
Book cover

Hereditary Colorectal Cancer pp 503–534Cite as

Genetic Counselling Across Culture and Health Systems: Australia

  • Chapter
  • First Online:

  • 976 Accesses

Part of the book series: M.D. Anderson Solid Tumor Oncology Series ((MDA,volume 5))

Abstract

Australia is a multicultural society where the Anglo-celtic heritage and institutions dominate the culture of the country. In this chapter, the health care system, the centralization of cancer care and cancer registries, and cancer family registries will be discussed. A detailed discussion of the approach to genetic counselling including the training of genetic counsellors, research, and privacy issues among others will be included.

This is a preview of subscription content, log in via an institution.

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   169.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   299.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD   219.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  1. Australian Bureau of Statistics.www.abs.gov.au/AUSSTATS/abs.

  2. Barlow-Stewart K, Yeo SS, Meiser B, Goldstein D, Tucker K, Eisenbruck M. Toward cultural competence in cancer genetic counselling and genetics education: lessons learned from Chinese Australians. Genet Med. 2006;8:24–32.

    Article  PubMed  Google Scholar 

  3. Saheh MT, Barlow-Stewart KK. Genetics education in a culturally diverse population – lessons learnt, future directions. Ann Hum Biol. 2005;32:211–7.

    Article  Google Scholar 

  4. Southey MC, Jenkins MA, Mead L, Whitty J, Trivell M, Tesoriero AA, et al. Use of molecular and tumour characteristics to prioritize mismatch repair gene testing in early onset colorectal cancer. J Clin Oncol. 2005;23:6524–32.

    Article  PubMed  CAS  Google Scholar 

  5. Cancer Survival in Victoria. 2007.

    Google Scholar 

  6. Jenkins MA, Baglietto L, Dowty JG, Van Vliet CM, Smith L, Mead LJ, et al. Carrier risks for mismatch repair gene mutation carriers: a population based early onset case-family study. Clin Gastroenterol Hepatol. 2006;4(4):489–96.

    Article  PubMed  CAS  Google Scholar 

  7. Katballe N, Juul S, Christensen M, Orntoft T, Wikman F, Laurberg S. Patient accuracy of reporting on hereditary nonpolyposis colorectal cancer related malignancy in family members. Br J Surg. 2001;88:1228–33.

    Article  PubMed  CAS  Google Scholar 

  8. Bonke TA, Lindhout D, Clarke AJ, Stijnen T. Genetic risk estimation by healthcare professionals. Med J Aust. 2005;182:116–8.

    PubMed  Google Scholar 

  9. Skene L. Patient’s rights or family responsibilities? Two approaches to genetic testing. Med Law Rev. 1998;6:1–41.

    Article  PubMed  Google Scholar 

  10. www.privacy.gov.au/act/index.html#health

  11. www.privacy.gov.au/publications/npps01.html

  12. Zeps N, Iacopetta BJ, Schofield L, George JM, Goldblatt J. Waiver of patient consent in research: when do potential benefits in the community outweigh private rights. Med J Aust. 2007;186:88–90.

    PubMed  Google Scholar 

  13. Iacopetta B, Platell C. Population based screening for hereditary non polyposis colorectal cancer (Lynch Syndrome): the Western Australian approach. Aust N Z J Surg. 2007;77:197–8.

    Article  Google Scholar 

  14. Dowling DJ, St John DJB, Macrae FA, Hopper JL. Yield from colonoscopic screening in people with a strong family history of common colorectal cancer. J Gastroenterol Hepatol. 2000;15:939–44.

    Article  PubMed  CAS  Google Scholar 

  15. Featherstone C, Colley A, Tucker K, Kirk J, Barton MB. Estimating the referral rate for cancer genetic assessment from a systematic review of the evidence. Br J Cancer. 2007;96:391–8.

    Article  PubMed  CAS  Google Scholar 

  16. www.cancer.org.au/guidelines

  17. Umar A, Boland CR, Terdiman J, et al. Revised Bethesda guidelines for hereditary non polyposis colorectal cancer (Lynch Syndrome) and microsatellite instability. J Natl Cancer Inst. 2004;96:261–8.

    Article  PubMed  CAS  Google Scholar 

  18. Vasen HF, Watson P, Mecklin JP, Lynch HT. New clinical criteria for hereditary non polyposis colorectal cancer (HNPCC, Lynch syndrome) proposed by the International Collaborative Group on HNPCC. Gastroenterology. 1999;116:1453–6.

    Article  PubMed  CAS  Google Scholar 

  19. Edwards A, Sivell S, Dundon J, Elwyn G, Evans R, Gaff C, et al. Effective risk communication in clinical genetics: a systematic review. Cardiff: Cardiff University; 2006. p. 249.

    Google Scholar 

  20. Berk T, Macrae F. Colorectal Cancer can Run in the Family. Medcom Asia Pacific. www.crcbook.com.

  21. Lynch EL, Doherty RJ, Gaff CL, Macrae FA, Lindeman GJ. “Cancer in the family” and genetic testing: implications for life insurance. Med J Aust. 2003;179:480–3.

    PubMed  Google Scholar 

  22. Otlowski M, Barlow-Stewart K, Taylor S, Stranger M, Treloar SJ. Investigating genetic discrimination in the Australian life insurance sector: the use of genetic test results in underwriting, 1999–2003. J Law Med. 2007;14(3):367–96.

    PubMed  Google Scholar 

  23. www.ifsa.com.au/documents/2000_publications_genetics.pdf

  24. Gaff CL, Rogers MT, Frayling IM. Genetic counselling and consent for tumour testing in HNPCC. Clin Genet. 2007;71:400–5.

    Article  PubMed  CAS  Google Scholar 

  25. Jarvinen HJ, Aarnio M, Mustonen H, Aktan-Collan K, Aaltonen LA, Peltomaki P, et al. Controlled 15 year trial of screening for colorectal cancer in hereditary non polyposis colorectal cancer. Gastroenterology. 2000;118:829–34.

    Article  PubMed  CAS  Google Scholar 

  26. MacLennan R, Macrae FA, Bain C, et al. Randomized trial of intake of fat, fibre and betacarotene to prevent colorectal adenomas. J Natl Cancer Inst. 1995;87:1760–6.

    Article  PubMed  CAS  Google Scholar 

  27. Lobb EA, Butow PN, Barratt A, Meiser B, Gaff C, Young MA, et al. Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomes. Br J Cancer. 2004;90:321–7.

    Article  PubMed  CAS  Google Scholar 

  28. Clarke A, Richards M, Kerzin-Storrar L, Halliday J, Young MA, Simpson SA, et al. Genetic professionals’ reports of nondisclosure of genetic risk information within families. Eur J Hum Genet. 2005;13:556–62.

    Article  PubMed  Google Scholar 

  29. Gaff CL, Collins V, Symes T, Halliday J. Facilitating family communication about predictive genetic testing: probands’ perceptions. J Genet Couns. 2005;14:133–40.

    Article  PubMed  Google Scholar 

  30. Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, et al. Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet. 2007;15(10):999–1011.

    Article  PubMed  Google Scholar 

  31. Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann WK, et al. How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet. 2003;119C:78–86.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Colorectal Medicine and Genetics, The Royal Melbourne Hospital, Melbourne, VIC, Australia

    Finlay Macrae

  2. Genetic Health Services, Murdoch Childrens Research Institute, Royal Children’s Hospital, Flemington Road, Parkville, VIC, 3052, Australia

    Clara Gaff

Authors
  1. Finlay Macrae
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Clara Gaff
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Finlay Macrae .

Editor information

Editors and Affiliations

  1. M.D. Anderson Cancer Center, Surgical Oncology, The University of Texas, Holcombe Blvd. 1515, Houston, 77030, Texas, USA

    Miguel A. Rodriguez-Bigas

  2. Associate Professor of Surgery, Brazilian Registry of Inherited, Colorec, University of São Paulo Medical School, Sao Paulo, Brazil

    Raul Cutait

  3. M.D. Anderson Cancer Center, Gastroenterology, The University of Texas, Houston, 77030, Texas, USA

    Patrick M. Lynch

  4. Cancer Research UK London Research Insti, Molecular and Population Genetics Labora, London, United Kingdom

    Ian Tomlinson

  5. Medical Center, Gastroenterology, Leiden University, Leiden, 2333 AA, Netherlands

    Hans F.A. Vasen

APPENDIX 30.8 Familial Cancer Centre

APPENDIX 30.8 Familial Cancer Centre

1.1 Consent Form for Genetic Testing

This form has been designed to ensure that consent for testing is on an informed basis. Please read and consider each section.

1.1.1 Genetic Testing

I understand that:

  • My blood/pathology sample will be used to examine my genetic material and tested for one or more of the genes involved in predisposing to:

  • Hereditary breast/ovarian cancer

  • Hereditary Non Polyposis Colorectal Cancer (HNPCC)

  • Familial Adenomatous Polyposis (FAP)

  • Other (specify)

  • The testing is completely voluntary and it is possible to withdraw from the testing process at any stage

  • Testing may identify genetic changes (mutations). These changes may be present in other members of my family

1.1.2 What are the implications of genetic testing?

I understand that:

  • Alterations (mutations) in cancer predisposing genes cause a high, but not a certain risk of cancer.

  • The test may show the presence of a mutation but it cannot accurately predict the age of onset or type of cancer that may develop as a result.

  • The test may not reveal all possible mutations that may occur in the genes tested.

  • Test results of one individual can change the estimation of risk for other family members who have not requested testing

  • Test results of one individual may affect the ability of family members and/or myself to obtain some types of insurance.

1.1.3 What will be done with the test results?

I agree that:

  • The test results will be held by The Royal Melbourne Hospital and will be known by those participating in providing the test.

  • Information relating to my testing will not be revealed or made available to any other person/organisation, except with my consent (see below) or when disclosure is required by law.

  • The results may be used to help the counselling and testing of other family members, provided that to do so would not reveal any details of my identity or personal test result without my consent.

I consent to my test results being made available at any time to the following people:

  • Any family member

  • Only to the following individuals (specify) _________________________________

  • My doctor(s) (specify) ________________________________________________

  • Research group (specify) ______________________________________________

  • No other individual

In the event of my death, my test results should be released to (name) (address) ________________________________________________________________

1.1.4 What will be done with the sample after testing?

I agree that:

  • The sample will remain the property of the laboratory. It will be stored in good faith but its suitability for future use cannot be guaranteed.

  • The sample may be examined again in the future using new methods.

  • My identified sample will not be used for any other purpose except in accordance with my written consent

  • It may be disposed of at a time determined by standard laboratory practices or regulatory requirements.

1.1.5 Research

After testing has been completed

  • I consent to my potentially identifiable sample being used for future RMH Clinical Research and Ethics Committee approved research. Or

  • My DNA sample may not be used for research without my written consent for that research Or

  • My DNA sample may not be used for research and I do not wish to be contacted regarding research.

Signature of Individual _____________________________________________

Date ___________________________________________________________

Printed Name ____________________________________________________

Date of Birth

ATTACH BRADMA LABEL

Rights and permissions

Reprints and permissions

Copyright information

© 2010 Springer Science+Business Media, LLC

About this chapter

Cite this chapter

Macrae, F., Gaff, C. (2010). Genetic Counselling Across Culture and Health Systems: Australia. In: Rodriguez-Bigas, M., Cutait, R., Lynch, P., Tomlinson, I., Vasen, H. (eds) Hereditary Colorectal Cancer. M.D. Anderson Solid Tumor Oncology Series, vol 5. Springer, Boston, MA. https://doi.org/10.1007/978-1-4419-6603-2_30

Download citation

  • DOI: https://doi.org/10.1007/978-1-4419-6603-2_30

  • Published:

  • Publisher Name: Springer, Boston, MA

  • Print ISBN: 978-1-4419-6602-5

  • Online ISBN: 978-1-4419-6603-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation