Investigating genetic discrimination in Australia: Perceptions and experiences of clinical genetics service clients regarding coercion to test, insurance and employment

Australian Journal of Emerging Technologies and Society

Volumn 5, Issue 2, 2007, Pages 63-83

  Taylor, Sandra ^a   Treloar, Susan ^b   Barlow Stewart, Kristine ^c   Otlowski, Margaret ^d   Stranger, Mark ^d  

^a CENTRAL QUEENSLAND UNIVERSITY   (Australia)

^b UNIVERSITY OF QUEENSLAND   (Australia)

^c ROYAL NORTH SHORE HOSPITAL   (Australia)

^d UNIVERSITY OF TASMANIA   (Australia)

Author keywords

Australia; Clinical genetics clients; Coercion; Employment; Genetic discrimination; Insurance

Indexed keywords

EID: 35248884711     PISSN: 14490706     EISSN: 14490706     Source Type: Journal    
DOI: None     Document Type: Article

References (60)

1. AIHW (Australian Institute of Health and Welfare) (2004) 'Australia's Health 2004' http://ww.aihw.gov.au Accessed July 2005.
2. ALRC/AHEC (Australian Law Reform Commission & Australian Health Ethics Committee of the National Health & Medical Research Council NHMRC) (2003) Essentially Yours: The Protection of Human Genetic Information in Australia, Sydney: Commonwealth of Australia.
3. Barash, C.A. (2000) 'Genetic Screening for Hemochromatosis: Then and Now' Genetic Testing, Vol. 4, No.2: pp. 213-218.
4. Barlow-Stewart, K.K., Taylor, S.D. & Ottowski, M.F. (2005) 'Knowing your genes: freedom, burden or power?' in Wilson, S., Meagher, G., Gibson, R., Denemark, D. & Western, M. (eds) Australian Social Attitudes: The First Report, Sydney, UNSW Press.
5. Barlow-Stewart, K. & Keays, D. (2001) 'Genetic discrimination in Australia' Journal of Law & Medicine, Vol. 8, pp. 250-262.
6. Billings, P.M., Kohn, M., de Cuevas, J., Beckwith, J., Alper, J.S. & Natowicz, M.R. (1992) 'Discrimination as a Consequence of Genetic Testing' American Journal of Human Genetics, Vol. 50, pp. 476.
7. Bombard, Y., Pensiner, E., Decolongon, J., Klimek, M.L.M., Creighton, S., Suchowersky, O., Guttman, M., Paulsen, J.S., Botorff, J.L. & Hayden, M.R. (2007) 'Managing genetic discrimination: Strategies used by individuals found to have the Huntington disease mutation' Clinical Genetics, Vol. 71, pp. 220-231.
8. Broom, D. (2002) 'Gender and health' In: Germov, J. (ed) Second Opinion: An Introduction to Health Sociology Melbourne: Oxford, pp. 95-111.
9. Brown, S., Bruinsma, F., Darcy, M.A., Small, R. & Lumley, J. (2004) 'Early discharge: no evidence of adverse outcomes in three consecutive population-based Australian surveys of recent mothers, conducted in 1989, 1994 and 2000' Paediatric and Perinatal Epidemiology, Vol. 18, pp. 202-213.
10. CGE (Centre for Genetics Education) (2003) 'Genetic Information and Life Insurance Products in Australia' http://www.genetics.com.au/pdf/pubs/ lifeinsurance.pdf Site accessed March 2007
11. Chapman, E. (2002) 'Ethical Dilemmas in Testing for Late Onset Conditions: Reactions to Testing and Perceived Impact on Other Family Members' Journal of Genetic Counseling, Vol. 11, pp. 351-367.
12. Chapman, P.D. & Burn, J. (1999) 'Genetic predictive testing for bowel cancer predisposition: The impact on the individual' Cytogenetics and Cell Genetics, Vol. 86, No. 2, pp. 118-124.
13. Commonwealth Department of Health & Ageing (2005) 'Establishment of a human genetics advisory committee' http://www.health.gov.au/internet/ budget/publishing.nsf/Content/health-budget2005-hbudget-hfact6.htm Date accessed May 26, 2005
14. Cox, S.M. & McKellin, W. (1999) "'There's this thing in our family'": predictive testing and the construction of risk for Huntington Disease' Sociology of Health and Illness, Vol. 21, No. 5, pp. 622-646.
15. Gandolfi, A.S. & Miners, L. (1996) 'Gender-Based Differences in Life Insurance Ownership' Journal of Risk and Insurance, Vol. 63, No. 4, pp. 683-693.
16. Geller, L.N. (2002) 'Current developments in genetic discrimination', in Alper, J.S., Ard, C., Asch, A., Beckwith, J., Conrad, P. & Geller, L. (eds) The Double-Edged Helix: Social Implications of Genetics in a Diverse Society Baltimore: John Hopkins University Press, pp. 267-285.
17. Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (2002) 'Individual, family, and societal dimensions of genetic discrimination: a case study analysis', in Alper, J.S., Ard, C., Asch, A., Beckwith, J., Conrad, P. & Geller, L. (eds) The Double-Edged Helix: Social Implications of Genetics in a Diverse Society Baltimore: John Hopkins University Press, pp. 245-266.
18. Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (1996) 'Individual, family, and societal dimensions of genetic discrimination: a case study analysis' Science and Engineering Ethics, Vol. 2, pp. 71-88.
19. Gutiérrez, C. & MacDonald, A. (2004) 'Huntington's Disease, Critical illness insurance and life insurance' Scandinavian Actuarial Journal, Vol. 4, pp. 279-313.
20. Haan, E.A. (2003) 'The clinical geneticist and the "new genetics"' Medical Journal of Australia, Vol. 178, No. 9, pp. 458-462.
21. Hall, M.A., McEwen, J.E., Barton, J.C., Walker, A.P., Howe, E.G., Reiss, J.A., Power, T.E., Ellis, S.D., Tucker, D.C., Harrison, B.W., McLaren, G.D., Ruggiero, A. & Thomson, E.J. (2005) 'Concerns in a primary care population about genetic discrimination by insurers' Genetics in Medicine, Vol. 7, No. 5, pp. 311-316.
22. Hallowell, N. (1999) 'Doing the right thing: genetic risk and responsibility' Sociology of Health & Illness, Vol. 21, No. 5, pp. 597-621.
23. Hendricks, A. (1997) 'Genetics, human rights and employment: American and European perspectives' Medical Law, Vol. 16, pp. 557-565.
24. HGSA (Human Genetics Society of Australasia) (1999) 'Predictive Genetic Testing and Insurance' http://www.hgsa.com.au Site last accessed March 2007.
25. IFSA (Investment and Financial Services Association) (2002) 'Life Insurance and Genetic Testing in Australia 2002' http://www.ifsa.com.au/index.aspx Site accessed March 2006.
26. Knoppers, B.M., Lemmons, T., Godard, B., Joly, Y., Avard, D., Clark, T., Hamet, P., Hoy, M., Lanctôt, S., Lowden, S., Martin, H., Maugard, C., Millett, Y., Simard, J., Vachon, M. & Zinatelli, F. (2004) 'Genetics and life insurance in Canada: points to consider' www.cmaj.ca/cgi/content/full/170/9/1421/DC2 Site accessed September 2005
27. Langbehn, D., Brinkman, R., Falush, D., Paulsen J. & Hayden M. (2004) 'A new model for prediction of the age of onset and penetrance for Huntington's disease based on CAG length' Clinical Genetics, Vol. 65, pp. 267-277.
28. Lapham, E.V., Kozma, C. & Weiss, J.O. (1996) 'Genetic discrimination: perspectives of consumers' Science, Vol. 274, pp. 621-624.
29. Lemke, T. (2005) 'Beyond genetic discrimination: Problems and perspectives of a contested notion' Genomics, Society & Policy, Vol. 1, No. 3, pp. 22-40.
30. Lemmens, T. Joly, Y. Knoppers, B. M. (2004) 'Genetics and Life Insurance: A Comparative Analysis' GenEdit, Vol. 2, pp. 1-14.
31. Low, L., King, S. & Wilkie, T. (1998) 'Genetic discrimination in life insurance: empirical evidence from a cross sectional survey of genetic support groups in the United Kingdom' British Medical Journal, Vol. 317, pp. 1632-1635.
32. Lynch, E.L., Doherty, R.J., Gaff, C.L., Macrae, F.A. & Lindemann, G.J. (2003) 'Cancer in the family and genetic testing: implications for life insurance' Medical Journal of Australia, Vol. 179, No. 9, pp. 480-483.
33. Markman, M. (2004) 'Genetic discrimination arising from cancer risk assessments: A societal dilemma' Cleveland Clinic Journal of Medicine Vol. 71, No. 1, pp. 12-18.
34. Marteau, T. & Richards, M. (1996) The Troubled Helix: Social and Psychological Implications of the New Human Genetics Cambridge: Cambridge University Press.
35. Meiser, B. & Dunn, S. (2000) 'Psychological impact of genetic testing for Huntington's disease: an update of the literature' Journal of Neurology, Neurosurgery & Psychiatry, Vol. 69, pp. 574-578.
36. Nowlan, W. (2003) 'A scarlet letter or a red herring?' Nature, Vol. 421, p. 313.
37. Otlowski, M.F. (2005) 'Exploring the Concept of Genetic Discrimination' Journal of Bioethical Inquiry, Vol. 2, pp. 165-176.
38. Otlowski M.F. (2002) 'Employers' use of genetic test information: is there a need for regulation?' Australian Journal of Labour Law, Vol. 15, pp. 1-39.
39. Otlowski, M. (2001) 'Is there scope for lawful genetic discrimination in health insurance in Australia?' Journal of Law & Medicine, Vol. 8, pp. 427-432.
40. Otlowski, M.F., Barlow-Stewart, K.K., Taylor, S.D., Stranger, M. & Treloar, S.A. (2007a) 'Investigating genetic discrimination in the Australian life insurance sector: use of genetic test results in underwriting 1999-2003' Journal of Law & Medicine, 14(3): 367-396.
41. Otlowski, M.F., Taylor, S.D., Barlow-Stewart, K.K., Stranger, M. & Treloar, S. (2007b, in press) 'The use of legal remedies in Australia for pursuing allegations of genetic discrimination: Findings of an empirical study' International Journal of Discrimination, Vol. 9, pp. 3-35.
42. Otlowski, M.F., Taylor S. D. & Barlow-Stewart, K. K. (2002) 'Australian empirical study into genetic discrimination' Genetics in Medicine, Vol. 4, Issue 5, pp. 392-395.
43. Petersen, A. & Bunton, R. (2002) The New Genetics and the Public's Health Routledge, London.
44. Peterson, E.A., Milliron, K.J., Lewis, K. E., Goold, S.D. & Merajver, S.D. (2002) 'Health insurance and discrimination concerns and BRCA1/2 testing in a clinic population' Cancer Epidemiology, Biomarkers & Prevention, Vol. 11, pp. 70-87.
45. Richards, M. (1996) 'Families, kinship and genetics' in Marteau, T. & Richards, M. The Troubled Helix: Social and Psychological Implications of the New Human Genetics Cambridge: Cambridge University Press.
46. Sale, M.M., Hazelwood, K., Zimmet, P.Z., Shaw, J.E., Stankovich, J.M., Greenaway, T.M. & Dwyer, T. (2004) 'Trends in diabetes management practices of patients from an Australian insulin-treated diabetes register' Diabetic Medicine, Vol. 21, pp. 165-170.
47. Sandberg, P. (1995) 'Genetic information and life insurance: a proposal for an ethical European policy' Social Science & Medicine, Vol. 40, pp. 1549-1559.
48. SPSS Inc. (Statistical Package for the Social Sciences) (2004) SPSS 12.0 for Windows 2004, http:/www.spss.com/spss/ Illinois, USA. Site accessed June 6, 2005.
49. Steginga, S.K., Occhipinti, S., McCaffrey, J. & Dunn, J. (2001) 'Men's attitudes toward prostate cancer and seeking prostate-specific antigen testing' Journal of Cancer Education, Vol. 16, pp. 42-45.
50. Taylor, S.D. (2005) 'Gender differences in attitudes amongst those af risk for Huntington's disease' Genetic Testing, Vol. 9, No. 2, pp. 152-157.
51. Taylor, S.D. (2004) 'Predictive genetic test decisions for Huntington's disease: Context, appraisal and new moral imperatives' Social Science Medicine, Vol. 58, No. 1, pp. 137-149.
52. Taylor, S. (1998) 'A case study of genetic discrimination: Social work and advocacy in a new context' Australian Social Work, Vol. 51, pp. 51-58.
53. Taylor, S. (1994) 'Demand for predictive genetic testing for Huntington's disease in Australia, 1987 - March 1993' Medical Journal of Australia, Vol. 161, No. 6, pp. 351-355.
54. Taylor, S., Treloar, S., Barlow-Stewart, K., Stranger, M. & Otlowski, M. (2007, manuscript in review) 'Investigating genetic discrimination in Australia: A large-scale survey of clinical genetics clients' perceptions and experiences' submitted May 2007.
55. Taylor, S. D., Otlowski, M.F., Barlow-Stewart, K.K., Stranger, M. & Chenoweth, K. (2004) 'Investigating genetic discrimination in Australia: opportunities and challenges in the early stages' New Genetics and Society, Vol. 23, No. 2, pp. 225-239.
56. Treloar, S.A., Morley, K.I., Taylor, S.D. & Hall, W.D. (2007) '"Why do they do it?" A pilot study towards understanding participant motivation and experience in a large, genetic epidemiological study of endometriosis' Community Genetics, Vol. 10, pp. 61-71.
57. Treloar, S.A., Taylor, S.D., Otlowski, M.F., Barlow-Stewart, K.K., Stranger, M. & Chenoweth, K. (2004) 'Methodological considerations in the study of genetic discrimination' Community Genetics, Vol.7, pp. 161-168.
58. Turner, D.R., Haan, E.A., Jacka, E., Kalucy, R.S., Burns, R.J., Willoughby, J.O. & Crabb, R. (1988) 'Prenatal and adult presymptomatic testing for Huntington's disease' Medical Journal of Australia, Vol. 148, pp. 567-573.
59. Wertz, D.C. (2002) 'Genetic discrimination - an overblown fear?' Nature Review Genetics, Vol. 297, pp. 196-197.
60. Zick, C.D., Smith, K.R., Mayer, R.N. & Botkin, J.R. (2000) 'Genetic testing, adverse selection and the demand for life insurance' American Journal of Medical Genetics, Vol. 93, pp. 29-39.