Research and Reports
- Ten year evaluation of the high school genetic carrier screening program for Tay-Sachs disease, cystic fibrosis and thalassaemia
- Psychological Impact of Preimplantation Genetic Diagnosis
- Evaluation of the dissemination of bowel cancer screening guidelines to General Practitioners
- The Genetic Discrimination Project
- Cancer, Culture and Genetics
- Telehealth Cancer Genetics
- Meiser B, Price MA, Butow PN, Karatas J, Wilson J, Heiniger L, Baylock B, Charles M, McLachlan SA, Phillips KA. Psychosocial factors and uptake of risk-reducing salpingo-oophorectomy in women at high risk for ovarian cancer.
Familial Cancer. 2013 Mar;12(1):101-9.
- Meiser B, Price MA, Butow PN, Karatas J, M Charles M, Phillips KA. Are women at high risk for serous gynaecological cancer (SGC) opting for risk-reducing salphingo-oophorectomy motivated by high levels of anxiety and risk perceptions? Hereditary Cancer in Clinical Practice 2012; 10(Suppl 2): A5.
- Meiser B, Gleeson M, Watts K, Peate M, Zilliacus E, Barlow-Stewart K, Saunders C, Mitchell G, and Kirk J.Getting to the Point: What Women Newly Diagnosed With Breast Cancer Want to Know About Treatment-Focused Genetic Testing. Oncology Nursing Forum 2012: 39(2).
4. Meiser B, Gleeson M, Watts K, Peate M, Zilliacus E, Barlow-Stewart K, Saunders C, Mitchell G, Kirk J. Getting to the point: what women newly diagnosed with breast cancer want to know about treatment-focused genetic testing. Accepted by Oncology Nursing Forum on 20 March 2011.
5. Saleh M, Barlow-Stewart K, Meiser B, Tucker K, Eisenbruch M, Kirk J. Knowledge, Attitudes and Beliefs about Cancer: Arabic-Australians. Psycho-Oncology 2011 DOI: 10.1002/pon.
6. Saleh M, Barlow-Stewart K, Meiser B, Kirk J, Tucker K. Exploration of the cultural context of kinship and genetics amongst Arabic-Australians: implications for practice. Journal of Genetic Counseling 2011;20(5):465-475.
7. Karatas JC, Barlow-Stewart, K, Meiser B, McMahon C, Strong K, Hill W, Roberts C, Kelly P. A prospective study assessing anxiety, depression and maternal-fetal attachment in women using PGD. Human Reproduction 2011;26(1):148-156.
8. Saleh M, Barlow-Stewart K, Meiser B, Tucker K, Eisenbruch M, Kirk J (2010). Knowledge, attitudes and beliefs of Arabic-Australians concerning cancer. Psycho-oncology. Accepted 18 October 2010.
9. Dunlop K, Barlow-Stewart K, Griffin M (2010). Family history. A role in prevention. Australian Family Physician 39(10):793-794
10. Zilliacus E, Meiser B, Lobb E, Dudding T, Barlow-Stewart K, Tucker K. (2010) The virtual consultation: Practitioners’ experience of telehealth genetic counseling. Telemedicine and e-Health 10.1089/tmj.2009.0108
11. Karatas JC, Barlow-Stewart, K, Meiser B, McMahon C, Strong K, Hill W, Roberts C, Kelly P. A prospective study assessing anxiety, depression and maternal-fetal attachment in women using PGD. Accepted by Human Reproduction on 15/5/2010.
12. Karatas, JC, Strong, KA, Barlow-Stewart, K, McMahon, C Meiser, B, Roberts, C. (2010) Psychological impact of Preimplantation Genetic Diagnosis: a review of the literature. Reprod Biomed Online. 20:83-91
13. Otlowski M, Stranger M, Taylor S. Barlow-Stewart K, Treloar S (2010) Practices and attitudes of Australian employers in relation to the use of genetic information: report of a national study. Comp Labor Law Policy J. In press.
14. Lobb E, Barlow-Stewart K, Suthers G, Hallowell N (2010) Treatment - focused DNA testing for newly-diagnosed breast cancer patients: Some implications for clinical practice. Clin Gen 77: 350–354
15. Karatas, JC, Barlow-Stewart, K, McMahon, C Meiser, B, K.A. Strong, W. Hill , C. Roberts, and P. Kelly (2010). Psychological adjustment, knowledge and unmet information needs in women undergoing PGD. Human Reproduction 25:1481–1489.
16. Karatas, JC, Barlow-Stewart, K, Strong, KA, McMahon, C Meiser, B, Roberts, C. (2010). Women’s experience of pre-implantation genetic diagnosis: a qualitative study. Prenat Diagn Published online in Wiley InterScience (www.interscience.wiley.com) DOI: 10.1002/pd.2542
17. Dunlop K and Barlow-Stewart K (2010). Start the Conversation - The New South Wales (Australia) Family Health History Campaign. Public Health Genomics 13:301-309
18. Zilliacus E, Meiser B , Lobb E, Barlow-Stewart K, Tucker K(2009). A balancing act - Telehealth cancer genetics and practitioners' experiences of a triadic consultation. J Gen Couns. 18:598-605
19. Axler RE, Strong KA, Jordens CFC, Ankeny RA, Barlow-Stewart K, Kerridge IH. (2009) What’s in a name? Searching the web for information about ethically contentious and emerging technologies. Journal of Communication in Healthcare. 2(2): 173-183.
20. Barlow-Stewart K, Otlowski M, Taylor S, Treloar S and Stranger M (2009). Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilisation of genetic testing. Genetics in Medicine 11(3): 193-201
21. Emery J, Barlow-Stewart K, Metcalfe, S.A. (2009). There’s cancer in the family. Australian Family Physician 38(4):194-198
22. Saleh M, Barlow-Stewart K, Meiser B, Muchamore I (2009) Challenges faced by genetics service providers' practicing in a culturally and linguistically diverse population. An Australian experience. J Gen Couns 18: 436-446.
23. Taylor S, Treloar S, Barlow-Stewart K, Stranger M and OtlowskiM (2008). Investigating perceptions and experiences of genetic discrimination I: A large-scale survey of clinical genetic service consumers in Australia. Clinical Genetics 74: 20–30
24. Meiser B, Irle J, Lobb E and Barlow-Stewart K (2008). Assessment of the content and process of genetic counselling: a critical review of empirical studies. J Genetic Couns 17:434-451
25. Meiser B, Tucker K, Friedlander M, Barlow-Stewart K, Lobb E, Saunders C and Mitchell G (2008). Genetic counselling and testing for inherited gene mutations in newly diagnosed patients with breast cancer: A review of the existing literature and a proposed research agenda. Breast Cancer Research 10:216 Available online http://breast-cancer-research.com/content/10/6/216
26. Wakefield, C. E., Meiser, B., Homewood, J., Peate. M., Taylor, A., Lobb, E., Kirk, J., Young, M., Williams, R., Dudding, T., Tucker, K., and the AGenDA Collaborative Group (Barlow-Stewart K Member). A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk. Breast Cancer Research and Treatment, 107: 2008: 289-301.
27. Wakefield, C. E., Meiser, B., Homewood, J., Ward, R., O’Donnell, S., Kirk, J., and the AGenDA Collaborative Group (Barlow-Stewart K Member). A randomized trial of a decision aid for individuals considering genetic testing for hereditary non-polyposis colorectal cancer risk. Cancer, 113(5): 2008: 956-965.
28. Barlow-Stewart, K., Gaff, C., Emery, J., Metcalfe, S.A. Family genetics. Australian Family Physician, 36(10): 2007: 802-805.
29. Emery, J., Barlow-Stewart K, Metcalfe, S.A., Sullivan, D. Genetics and preventive health care. Australian Family Physician, 36(10): 2007: 808-811.
30. Metcalfe SA, Barlow-Stewart K, Campbell J, Emery, J. Genetics and blood-haemoglobinopathies and clotting disorders. Australian Family Physician, 36(10): 2007: 812-819.
31. Metcalfe SA, Barlow-Stewart K, Delatycki MB, Emery, J. Population genetic screening. Australian Family Physician, 36(10): Oct 2007: 794-800.
32. Wakefield CE, Meiser B, Homewood J, Barlow-Stewart K and Tucker K (2007). A comparison of community, clinician and patient preferences for naming a cancer-related mutation. Clinical Genetics 71:140-7
33. Otlowski,M., Taylor S, Barlow-Stewart K, Stranger M, Treloar, S. (2007) The use of legal remedies in Australia for pursuing allegations of genetic discrimination: Findings from an empirical study. International Journal of Discrimination and the Law, 9: 3-35.
34. OtlowskiM, Barlow-Stewart K, Taylor S, Stranger M and Treloar S (2007). Investigating genetic discrimination in the Australian life insurance sector: use of genetic test results in underwriting 1999-2003. Aust J Law and Medicine 14: 367-396.
35. Taylor S, Treloar S, Barlow-Stewart K, Stanger M and Otlowski M (2007). Investigating Genetic Discrimination in Australia: Perceptions and Experiences of Clinical Genetics Service Clients Regarding Coercion to Test, Insurance and Employment Aust J Emerg Techn Soc;5:63
200636. Barlow-Stewart, K., Burnett, L. (2006) Ethical considerations in the use of DNA for the diagnosis of diseases. The Clinical Biochemist: Reviews 27:53-61.
37. Barlow-Stewart K , Yeo SS, Meiser B , Goldstein D, Tucker K and Eisenbruch M (2006). Towards cultural competence in cancer genetic counseling and genetics education: lessons learnt from Chinese-Australians. Genetics in Medicine 8:24-32
38. Muchamore I, Morphett and Barlow-Stewart K (2006). Newborn screening and dried blood spot specimens: Exploring existing and deliberated community perspectives. ANZ J Hlth Policy 3:14 http://www.anzhealthpolicy.com/content/3/1/14
200539. Yeo SS, Meiser B, Barlow-Stewart K, Goldstein D, Tucker K and Eisenbruch M (2005). Understanding beliefs of Chinese-Australians about cancer: the utility of an ethnographic approach. Psycho-oncology 14:174-186
40. Saleh MT and Barlow-Stewart K (2005). Genetics Education in a Culturally Diverse Population – Lessons Learnt, Future Directions. Annals of Human Biology 32(2): 211-217
41. Warren E, Anderson R, Proos A, Burnett L, Barlow-Stewart K, Hall J (2005). Cost-effectiveness of a school-based Tay-Sachs disease and cystic fibrosis genetic carrier screening program. Genetics in Medicine 7: 484-494
200442. Eisenbruch M, Yeo S, Meiser B, Goldstein D, Tucker K, Barlow-Stewart K (2004). Optimizing clinical practice in cancer genetics with cultural competence: Lessons to be learned from ethnographic research with Chinese-Australians. Social Science and medicine 59: 235-248.
43. Taylor, SD, Otlowski, MF, Barlow-Stewart, KK, Treloar, SA, Stranger, M & Chenoweth, K (2004). Investigating genetic discrimination in Australia: opportunities and challenges in the early stages. New Genetics and Society 23(2): 225- 239.
44. Treloar, SA, Taylor, SD, Otlowski, MF, Barlow- Stewart, KK, Stranger, M. & Chenoweth, K (2004). Methodological challenges in the study of genetic discrimination: A review. Community Genetics 7: 161-168.
200345. Barlow-Stewart K, Burnett L, Proos A, Howell V, Huq F, Lazarus R and Aizenberg H (2003). A genetic screening programme for Tay-Sachs disease and Cystic Fibrosis for Australian Jewish high school students. Journal of Medical Genetics 40: e45 (http://www.jmedgenet.com/cgi/content/full/40/4/ed45).
46. Barlow-Stewart K and Gaff C (2003). Working in partnership with support services in the era of the “New Genetics”. Medical Journal of Australia 178: 515-9.
47. Burnett L, Barlow-Stewart K, Proos A and Aizenberg H (2003). The “GeneTrustee”: a universal identification system that ensures privacy and confidentiality for human genetic databases. Journal of Law and Medicine 10: 506-13.
48. Otlowski M, Taylor S and Barlow-Stewart K (2003). Genetic discrimination: too few data. European Journal of Human Genetics 11: 1-2.
49. Burnett L, Barlow-Stewart K, Proos A and Aizenberg H (2003). Making national DNA databases safer. Lancet 362: 1761-2 (Letter to the Editor).
50. Gason AA, Sheffield E, Bankier A, Aitken MA, Metcalfe S, Barlow Stewart K, Delatycki MB (2003). Evaluation of a Tay-Sachs Disease screening program. Clinical Genetics 63: 386
51. Otlowski, M., Taylor, S. and Barlow-Stewart, K (2002). Australian empirical study into genetic discrimination. Genetics in Medicine 4(5): 392-395.
52. Otlowski, M., Taylor, S. and Barlow-Stewart, K (2002). Major study commencing into genetic discrimination in Australia. Journal of Law and Medicine 10(1): 41-48.
53. Otlowski M, Taylor, S. and Barlow-Stewart K (2002). Australian empirical study into genetic discrimination. Eubios Journal of Asian and International Bioethics 12(5): 164-167.
200154. Barlow-Stewart K and Keays D (2001). Genetic Discrimination in Australia. Journal of Law and Medicine 8: 250-262
55. Meiser B, Eisenbruch M, Barlow-Stewart K, Tucker K, Goldstein D, Steel Z (2001). Cultural aspects of cancer genetics: Setting a research agenda. Journal of Medical Genetics 38: 425-429.
199856. Barlow-Stewart KK, Butler B, Kinnear J, Martin M (1998). Change in public knowledge and attitudes regarding human genetics and genetics technology over 13 years : 1984-1997. European Journal of Human Genetics 6 (Suppl 1): 180.
57. Barlow-Stewart K and Butler B (1998). Consumers’ views on ethical issues in genetics. Journal of Genetic Counselling 6(7): 502.
- Barlow-Stewart K, Ed. (1993, 1994, 1996, 1998, 2000, 2002, 2004, 2007). The Genetics Resource Book: Directory of Genetics Services, Support Groups and Information for Australia and New Zealand. Centre for Genetics Education (ISBN 0 7310 7162 X)
- Barlow K (1995) Towards an informed choice: education and counselling in prenatal diagnosis for genetic disorders and birth defects. In Trent R. Handbook of Prenatal Diagnosis. Cambridge University Press.
- Barlow-Stewart K (1999). Genetic testing and society: freedom, burden, power. In O’Sullivan G, Sharman E and Short S. Goodbye Normal Gene, Pluto Press.
- Barlow-Stewart K and Christadoulou J (2001). Its all in our genes. In Oates K, Currow K, Hu W and Cameron I. Child Health: A Manual for General Practice, Maclennan & Petty Ltd, Australia
- Doble A, Barlow-Stewart K, Ferris S, Khor S, Stapleton P and Whittaker G (2001). Genetics in Society. Institute of Actuaries of Australia, Sydney ISBN 0 85813 070 X
- Barlow-Stewart K, Taylor S and Otlowski M (2005). Knowing your genes. In Wilson et al. Australian Social Attitudes – the first report. University of New South Wales Press Ltd, Sydney. ISBN 0 86840 671 6.
- Taylor S, Treloar S, Barlow-Stewart K, Otlowski M and Stranger M. Consumer experiences and predictive genetic testing. In Stranger, Mark (ed) (2007) Human Biotechnology and Public Trust: Trends, Perceptions and Regulation, Hobart: Centre for Law and Genetics. University of Tasmania.ISBN 978-0-646-48478-5
- Barlow-Stewart K, Petrie, D, O’Reilly A and Smith R (1999). Needs and experiences following the diagnosis of a genetic disorder. Newsletter of the Association of Genetic Support of Australasia, No. 40.
- Barlow-Stewart K (2001). Decision-making in the era of the genetic revolution. Living Ethics: Newsletter of the St James Ethics Centre, Issue 45.
- Barlow-Stewart K (2001). Benefits and burdens for families in the age of the New Genetics. Reform, Australian Law Reform Commission, Issue 7.
- Barlow-Stewart K (2004). Commercial interest in a person’s genetic information. Living ethics. Newsletter of the St James Ethics Centre. Issue 57, pp 14.
- Barlow-Stewart K and Burnett L (2006). Ethical considerations in the use of DNA for the diagnosis of diseases. Clin Biochem Rev Vol 27; 53-61
- Barlow-Stewart K (2009) Genetic Discrimination – Australian experiences and policies. Genewatch. The journal of the Council for Genetic responsibility.
- Barlow-Stewart K. Social, Legal and Ethical implications of the New Genetics in Australia. Scientific Staff Council conference, April 2003, Sydney
- Barlow-Stewart K. Social, Legal and Ethical implications of the New Genetics in Australia. Macquarie Graduate School of management seminar series, May 2003, Sydney
- Barlow-Stewart K. Genetic Testing: the impact on life insurance advisers and clients. Financial Advisers Risk Insurance Conference (DEXAAR) June 2003, Sydney
- Barlow-Stewart K. What are the key messages in genetics – and how can we broadcast them? Office of Public Policy and Ethics, Institute of Molecular Biology, September 2003, Brisbane
- Barlow-Stewart K. Genetic (DNA) screening – issues and ethics. International Judges Conference (EINSHAC Einstein Institute for Science, Health and Courts), September 2003, Sydney
- Barlow-Stewart K. The genetic discrimination project. For the Human Genetics Society of Australasia (NSW Branch) Scientific meeting, 3 February 2004, Royal North Shore Hospital, Sydney.
- Barlow-Stewart K. The Australian experience in genetics education. For the Ontario Advisory Committee on Genetics: Genetics education – horizon scanning workshop, 18 February 2004, Toronto, Ontario, Canada.
- Barlow-Stewart K. Genetics and society. Distinguished Scientist presentation for the ABC’s Science Media Fellowship program, 18 March 2004, ABC Studios, Sydney.
- Barlow-Stewart K. An overview of genetic information. For NSW Health Training and Education Seminar Series: Making sense of privacy and confidentiality in the research setting, 26 March 2004, Sydney.
10. Barlow-Stewart K. Could your genes predict your future? For the ABC’s Café Scientific, 23 June 2004, Rockhampton, Queensland
11. Barlow-Stewart K. Genetics, biotechnology and the legal issues. For the College of Law. 16 August 2004, Sydney.
12. Barlow-Stewart K, J Harris, F Bayliss, J Rasko. Panel for Public Forum. For the 7th World congress of Bioethics: Bioethics and You – Where are we going with gene technology, stem cells and cloning? 9 November 2004, Sydney.
13. Barlow-Stewart K. Genetics and Insurance. For the Children’s Cancer Institute Australia Seminar series, 13 December 2004, Prince of Wales Hospital, Sydney.
14. Barlow-Stewart K. Genetics Technology today & in the future – impact on you as a professional. CommInsure Risk Symposium, 24 February 2005, Perth
15. Barlow-Stewart K. Implementation of Essentially Yours: The NHMRC Human Genetics Advisory Committee of Australia. International Congress of Human Genetics., Brisbane August 2006.
16. Barlow-Stewart K. Culturally appropriate genetic testing and counselling in Chinese families. Transcultural Mental Health Centre Chinese Sub-Committee & the Australian Chinese Medical Association Charitable Trust 3rd Chinese Cultural Competency Workshop. Sydney October 2006
17. Barlow-Stewart K. Towards an informed community in the age of the new genetics. Health Research Conference, University of Sydney. Leura November 2006.
18. Barlow-Stewart K. Human Biotechnology and Public Trust: Trends, Perceptions and Regulation, Hobart: Centre for Law and Genetics.Australian community views on the impact and the afterwards of knowing your genetic information. Melbourne November 2006
19. Barlow-Stewart K. Family Health History Campaign 2006. Meeting of the Cardiac Society of Australia and New Zealand. Sydney March 2007.
20. Barlow-Stewart K. You want what? Insurance? RPAH Medical Officer’s Association 73rd Annual Reunion Seminar. Sydney October 2007.
21. Barlow-Stewart K. Genetics education for families and professionals. Joint 7th Human Genome Organization (HUGO)-Pacific Meeting and the 8th Asia-pacific Conference on Human Genetics. Cebu, Philippines April 2008.
- Barlow-Stewart K, Butler B, Kinnear J, Martin M (1998). Change in public knowledge and attitudes regarding human genetics and genetics technology over 13 years: 1984-1997. European Journal of Human Genetics, 6 (Suppl 1): 180.
- Barlow-Stewart K (1998). Needs and experiences of families following the diagnosis of a genetic disorder. Proceedings of GeneCom’98. Genetic Technology and the Community – Bioethics for Emerging Genetic Technologies in Society, Adelaide, South Australia.
- Tucker KM, Gleeson M, Barlow-Stewart KK, Reeson E, Lipscomber P (1998). Production and evaluation of an inherited breast cancer video. American Society of Human Genetics 63 (Suppl): 1178
- Proos AL, Barlow-Stewart K, Burnett L, Aizenberg H, Howell V (1998). Preliminary results on a unique carrier testing program being offered to senior high schools students in Australia American Society of Human Genetics 63 (Suppl): 1376
- Barlow-Stewart K, Butler B, Reeson E, Haan E (1999). The general public’s view on ethical issues in genetics. Proceedings of HGM’99: Human Genome Meeting, Brisbane, Australia
- Aizenberg H, Barlow-Stewart K, Burnett L, Howell V, Jackson D, Marzuli T, Proos A, Raik E (2001). Community Genetics Carrier Screening for Multiple Diseases. Clin Chem Lab Med 39(S306): IFCC EuroMedLab 2001.
- Taylor SD, TreloarS, Barlow-Stewart K, Stranger M, and Otlowski M (2004). Genetic Discrimination in Australia: the Perceptions of Consumers. The Human Genetics Society of Australasia (HGSA) Genes West Conference Fremantle, Western Australia 12-13 August 2004
- Taylor SD, Barlow-Stewart K, Manning D, Treloar S, Stranger M, and Otlowski M (2004). Genetic Discrimination in Australia: the Perceptions of Genetic Counsellors. The Human Genetics Society of Australasia (HGSA) Genes West Conference Fremantle, Western Australia 12-13 August 2004
- Otlowski M, Taylor S, Barlow-Stewart K, Stranger M, and Treloar S (2004). Genetic Discrimination: Overview of a Major Australian Empirical Research Project. World Medical Law Congress, Sydney, 1-5 August 2004
- Otlowski M,Barlow-Stewart K, Stranger M, Taylor S, Treloar S (2004). The Use of Genetic Test Results for Underwriting by Life Insurance Companies in Australia (1999-2003). The Human Genetics Society of Australasia (HGSA) Genes West Conference Fremantle, Western Australia, 12-13 August 2004
- Taylor SD, Treloar S, Barlow-Stewart K, Stranger M, and Otlowski M (2004). Genetic Discrimination in Australia: the Perceptions of Consumers. The Human Genetics Society of Australasia (HGSA) Genes West Conference Fremantle, Western Australia 12-13 August 2004
- Barlow-Stewart K, Treloar S, Taylor SD, Saleh M, Muchamore I, Stranger M, and Otlowski M (2004). Australian views on commercial and government interest in genetic test results and implications for public policy. The Australian Science Communicators Association and the Australian Medical Writers Association, National Conference. 27-30 September 2004, Coolangatta, Queensland.
- Barlow-Stewart K (2004). Genetic Privacy and Discrimination in Australia – consumer views. Introduction for the panel for the session ‘Genetic Privacy and Discrimination’ 7th World Congress of Bioethics, Sydney 9-12 November 2004
- Burnett L, Warren E, Anderson R, Proos A, Barlow-Stewart K, Hall J (2004). Cost-effectiveness of a school-based Tay-Sachs disease and cystic fibrosis genetic carrier screening program. Proc 54th Meeting Am Soc Hum Genetics, Toronto, Ontario Canada, October 2004.
- Barlow-Stewart K, Treloar S, Taylor S, Saleh M, Muchamore I, Stranger M, Otlowski M (2004). Australian views on commercial and government interests in genetic test results and implications for public policy. Proc 54th Meeting Am Soc Hum Genetics, Toronto, Ontario Canada, October 2004.
- Muchamore I, Morphett L, Barlow-Stewart K (2005). Public awareness, perceptions and attitudes towards newborn screening. Exploring the implications for current service delivery, research upon stored samples and future developments in genetic health. The Human Genetics Society of Australasia (HGSA) 29th Annual Conference, Newcastle, July 2005
- Barlow-Stewart K, Treloar S, Taylor S, Saleh M, Muchamore I, Stranger M, Otlowski M (2005). Knowing your genes – freedom, burden or power? Australian views on uses of genetic test results and implications for public policy. The Human Genetics Society of Australasia (HGSA) 29th Annual Conference, Newcastle, July 2005
- Taylor S, Treloar S, Barlow-Stewart K, Stranger M, and Otlowski M (2005). Perceptions and experiences of benefit, disadvantage and negative treatment associated with genetic information in an Australian sample. The Human Genetics Society of Australasia (HGSA) 29th Annual Conference, Newcastle, July 2005
- Strong KA, Kerridge I, Jordens C, Ankeny RA, Shaw P, O’Brien T, Carter S, Barlow-Stewart K. Creating ‘Savior Siblings’ for transplantation – discrepancy between parental wishes and clinical practice. Blood 112(11), 276, 2008.
- Meiser B, Gleeson M, Watts K, Saunders C, Mitchell G, Lobb E, Barlow-Stewart K, Kirk J, Tucker K. Acceptance, experiences and information preferences of young women newly diagnosed with breast cancer regarding treatment-focused genetic testing. European Journal of Human Genetics June 2010, 18(Supplement 1):376.
- Watts K, Kasparian N, McLoone J, Meiser B, Butow P, Barlow-Stewart K, Menzies S, Mann G.Attitudes toward hypothetical genetic testing, satisfaction with clinical care, and information needs among high risk melanoma survivors: A mixed methods study. European Journal of Human Genetics. 18(Supplement 1):390.
- E. M. Zilliacus, B. Meiser, E. A. Lobb, K. Barlow-Stewart, P. Kelly, J. Kirk. A. Spigelman, L. Warwick, K. Tucker. Is telegenetics as effective as face-to-face consultations for hereditary breast/ovarian cancer genetic counseling? European Journal of Human Genetics June 2010, 18(Supplement 1):377.
- J. C. Karatas, K. Barlow-Stewart, B. Meiser, C. McMahon, K. Strong, C. Roberts. Psychological impact of preimplantation genetic diagnosis: A prospective Australian study. European Journal of Human Genetics June 2010, 18(Supplement 1):383.
- K. L. Dunlop, K. Barlow-Stewart; Adaptation of a cancer communication skills training model for professional development in genetic counseling: description and evaluation European Journal of Human Genetics June 2010, 18(Supplement 1):393.
- K. Barlow-Stewart, L. Forrest, L. Purser, S. Metcalfe, J. Emery. Producing genetics education resources for primary care practitioners is just the beginning: challenges in dissemination and engagement. European Journal of Human Genetics June 2010, 18(Supplement 1):398.
Staff of the Centre for Genetics Education work collaboratively with colleagues across Australia to investigate the impact of genetics technologies on individuals, families and the professionals who care for them, determine needs for information, support and guidance, and information provision and dissemination. External funding sources for the projects and the principle investigators are indicated where appropriate.
Current projects involving the CGE include:
- Ten year evaluation of the high school genetic carrier screening program for Tay-Sachs disease, cystic fibrosis and thalassaemia
K Barlow-Stewart, L Burnett[2,3], A Proos[2,3], H Aizenberg
1) Centre for Genetics Education; 2) Pacific Laboratory Medicine Services (PaLMS), Northern Sydney Central Coast Health, Royal North Shore Hospital, Sydney; 3) Kolling Institute of Medical Research, University of Sydney, Royal North Shore Hospital, Sydney; 4) Wolper Jewish Hospital, Sydney.
Protocols for successful community genetics screening programs focus primarily on screening for Tay-Sachs disease genetic carriers in North American Jewish communities. Over the last ten years we have formally validated these protocols and have identified their key success factors. From these, we have developed a process by which such programs can be extended to include screening for multiple genetic conditions in a variety of cultures and communities.
J Karatas, Kristine Barlow-Stewart[1,2], Bettina Meiser, Catherine McMahon, Cynthia Roberts, Kim Strong, Bryanne Barnett
1) Faculty of Medicine, University of Sydney; 2) Centre for Genetics Education, Royal North Shore Hospital; 3) Psychosocial Research Group, Prince of Wales Hospital; 4) Dept of Psychology, Macquarie University; 5) Sydney IVF; 6) Centre for Values, Ethics and Law in Medicine, University of Sydney; 7) Infant, Child and Adolescent Mental Health Service, Sydney South West Area Health Service.
The study aims to explore anxiety, depression, coping styles, maternal-fetal/infant attachment and health information needs of a sample of women who are currently undergoing Preimplantation Genetic Diagnosis (PGD) at a Sydney IVF clinic. This prospective study will follow-up and assess these women up to 5 times from their first appointment at the IVF clinic through to postpartum. Results will inform practice standards, policy and health professional training.
K Barlow- Stewart K, M Cooper, E Gould , K Dunlop, D Reading, Hodgson C, J St John
1) Centre for Genetics Education; 2) The National Cancer Control Initiative, Melbourne; 3) Cancer Council, Victoria
In April 2002, the Commonwealth Department of Health & Ageing distributed 28,000 copies of guidelines that had been written under the auspices of the Australian Cancer Network (ACN) called Familial Aspects of Bowel Cancer: A Guide for Health Professionals to all General Practitioners around Australia. Between 2000 and 2002 GP workshops based on these guidelines had also been held in NSW and Victoria. In January 2003, a national evaluation of these guidelines with and without workshops was undertaken.
The 37% of GPs who could locate their guidelines were significantly better able to correctly categorise for risk of familial bowel cancer and to recommend appropriate screening protocols than those who could not locate them. The ability to locate their guidelines, and knowledge and skill were further enhanced if the GP had also attended a workshop. Attendance at a workshop alone had had no impact. The production of these guidelines involves considerable investments of finance, time and expertise by a broad range of stakeholders. However, creative strategies for their dissemination and promotion are essential if they are to be used or valued. Integrating them into an accompanying self-directed educational activity may assist in meeting this challenge.
M Otlowski, M, S Taylor, K Barlow-Stewart, M Stranger, S Treloar1) Centre for Law and Genetics, University of Tasmania; 2) School of Social Work & Welfare Studies, Central Queensland University, Australia; 3) Centre for Genetics Education; 4) Queensland Institute of Medical Research, Australia
The Genetic Discrimination Project (GDP) is a comprehensive investigation of genetic discrimination in Australia that has been undertaken from 2002 to 2005. The GDP was of triangulated design and comprised several sub-projects. The Consumer Study sub-project aimed to survey a targeted sample of asymptomatic clients of clinical genetics services regarding their attitudes and experiences of alleged genetic discrimination, to establish the prevalence of such discrimination within the sample, to describe the domains within which such incidents occurred and, where possible, to follow up and verify the extent to which such incidents could be said to constitute genetic discrimination. Financial support for this work has come from the Australian Research Council #DP0208853.
M Saleh1[1,2], B Meiser, K Tucker, J Kirk, K Barlow-Stewart
1) Centre for Genetics Education; 2) Psychosocial Research Group, Prince of Wales Hospital, NSW; 3) Hereditary Cancer Clinic, Prince of Wales Hospital, NSW; 4) Familial Cancer Service, Westmead Hospital, NSW
This project explores how people’s cultural background can shape their beliefs about genetics, kinship, inheritance and cancer. If we can better understand this, our next step will be to inform genetic professionals about how to provide more culturally competent genetic services to the Australian community. This project is being undertaken as a PhD project (University of NSW) by Mona Saleh with the Psychosocial Research Group at Prince of Wales Hospital, Sydney and is supported jointly by the Centre for Genetics Education and a New South Wales Cancer Council, Strategic Research Partnership Grant; Principle Investigator Dr Bettina Meiser.
E Zilliacus, B Meiser, E Lobb, J Kirk, T Dudding, L Warwick, K Barlow-Stewart, S Mireskandari, K Tucker
1) Department of Medical Oncology, Prince of Wales Hospital, Randwick, NSW; 2) Medical Psychology Research Unit, University of Sydney 3) Familial Cancer Service, Westmead Hospital, Westmead, NSW; 4) Hunter Genetics, Hunter New England Health Service, Newcastle, NSW Australia; 5) ACT Genetic Service, Canberra Hospital, Woden ACT; 6) Centre for Genetics Education.
The aim of this study is to explore perspectives of and experiences with telegenetics of clinical geneticists, other medical specialists and genetic counsellors, and their changing roles and expectations within the consultation. This project is being undertaken as a PhD project (University of NSW) by Elvira Zeliacus with the Psychosocial Research Group at Prince of Wales Hospital, Sydney and is supported by a New South Wales Cancer Council, Strategic Research Partnership Grant; Principle Investigator Dr Bettina Meiser.