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Research

PublicationsPhoto

Research projects

 

Publications

Peer-Reviewed Journals

  1. Barlow KK and Driscoll CF (1981). Linkage studies involving two male sterility mutants in hexaploid wheat. Genetics 98: 791-799.

  2. Sillence DO, Barlow KK, Garber AP, Hall JG and Rimoin DL (1984). Osteogenesis imperfecta type II delineation of the phenotype with reference to genetic heterogeneity. American Journal Medical Genetics 17: 407-423.

  3. Sillence DO, Barlow KK, Cole WG, Dietrich S, Garber AP and Rimoin DL (1986). Osteogenesis imperfecta type III. Delineation of the phenotype with reference to genetic heterogeneity. American Journal Medical Genetics 23: 821-832

  4. Barlow-Stewart KK (1994). Genetic Counselling in Australasia: past, present and future. Journal of Genetic Counselling 3: 296.

  5. 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.

  6. Barlow-Stewart Kand Butler B (1998). Consumers’ views on ethical issues in genetics. Journal of Genetic Counselling 6(7): 502.

  7. Barlow-Stewart K and Keays D (2001). Genetic Discrimination in Australia. Journal of Law and Medicine 8: 250-262

  8. 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.

  9. Otlowski, M., Taylor, S. and Barlow-Stewart, K (2002). Australian empirical study into genetic discrimination. Genetics in Medicine 4(5): 392-395.

  10. 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.

  11. 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.

  12. 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).

  13. 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.

  14. 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.

  15. Otlowski M, Taylor S and Barlow-Stewart K (2003). Genetic discrimination: too few data. European Journal of Human Genetics 11: 1-2.

  16. Burnett L, Barlow-Stewart K, Proos A and Aizenberg H (2003). Making national DNA databases safer. Lancet 362: 1761-2  (Letter to the Editor).

  17. 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.

  18. 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.

  19. 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.

  20. 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.

  21. 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.

  22. 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.

  23. 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.

  24. 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.

  25. 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.

  26. 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.

  27. Otlowski M, 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.

  28. Otlowski M, Barlow-Stewart K, Taylor S, Stranger M and Treloar S (2007). The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study. International Journal of Discrimination and the Law (Accepted).

  29. Taylor S, Treloar S, Barlow-Stewart K, Stranger M and Otlowski M (2007). Investigating perceptions and experiences of genetic discrimination I: A large-scale survey of clinical genetic service consumers in Australia. Clinical Genetics (in review).

  30. Taylor S, Treloar S, Barlow-Stewart K, Stranger M and Otlowski M (2007). Investigating perceptions and experiences of genetic discrimination II: Incidents of negative treatment reported in a survey of Australian clinical genetic service consumers. Clinical Genetics (in review).

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Books and Book Chapters

  1. Barlow-Stewart K, Ed. (1993, 1994, 1996, 1998, 2000, 2002, 2004). The Genetics Resource Book: Directory of Genetics Services, Support Groups and Information for Australia and New Zealand. Genetics Education Program (ISBN 0 7310 7162 X).

  2. 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.

  3. 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.

  4. Barlow-Stewart K and Christadoulou J (2001). It’s 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.

  5. 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.

  6. 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.

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Invited Papers in Journals and Newsletters

  1. 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.

  2. Barlow-Stewart K (2001). Decision-making in the era of the genetic revolution.  Living Ethics: Newsletter of the St James Ethics Centre, Issue 45.

  3. Barlow-Stewart K (2001). Benefits and burdens for families in the age of the New Genetics. Reform, Australian Law Reform Commission, Issue 7.

  4. 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.

  5. 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.

  6. Barlow-Stewart K. (2007) Ethnography: its impact in cultural competence and genetic counselling. J Gen Counselling (submitted).

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Research Projects

 

Staff of the Centre for Genetics Education (CGE) 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 and support and guide service 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[1], L Burnett[2,3], A Proos[2,3], H Aizenberg[4]

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.

 

  • Psychological Impact of Preimplantation Genetic Diagnosis

J Karatas[1], Kristine Barlow-Stewart[1,2], Bettina Meiser[3], Catherine McMahon[4], Cynthia Roberts[5], Kim Strong[6], Bryanne Barnett[7]

 

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.

 

  • Evaluation of the dissemination of bowel cancer screening guidelines to General Practitioners

K Barlow- Stewart K[1], M Cooper[1], E Gould[1] , K Dunlop[1], D Reading[2], Hodgson C[3], J St John[2]

 

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 written 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.

 

  • The Genetic Discrimination Project

M Otlowski, M[1], S Taylor[2], K Barlow-Stewart[3], M Stranger[1], S Treloar[4]

 

1) 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.

 

  • Cancer, Culture and Genetics

M Saleh1[1,2], B Meiser[2], K Tucker[3], J Kirk[4], K Barlow-Stewart[1]

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.

 

  • Telehealth Cancer Genetics

E Zilliacus[1], B Meiser[1], E Lobb[2], J Kirk[3], T Dudding[4], L Warwick[5], K Barlow-Stewart[6], S Mireskandari[1], K Tucker[1]

 

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.

 

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