Predictive genetic test decisions for Huntington's disease: Context, appraisal and new moral imperatives

Social Science and Medicine

Volumn 58, Issue 1, 2004, Pages 137-149

  Taylor, Sandra D ^a  

^a UNIVERSITY OF QUEENSLAND   (Australia)

Author keywords

Australia; Ethics; Huntington's disease; Predictive genetic testing

Indexed keywords

GENETICS;

ADULT; AGE DISTRIBUTION; ARTICLE; AUSTRALIA; CONTROLLED STUDY; DECISION MAKING; ETHICS; FAMILY HISTORY; FEMALE; GENETIC PROCEDURES; GENETIC RISK; GENETIC SCREENING; HIGH RISK POPULATION; HUMAN; HUNTINGTON CHOREA; INTERVIEW; MALE; MORALITY; NORMAL HUMAN; PHENOMENOLOGY; POLICY; QUALITATIVE ANALYSIS; SELF CONCEPT; SEX DIFFERENCE; SOCIAL PSYCHOLOGY;

EID: 0142186776     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0277-9536(03)00155-2     Document Type: Article

References (49)

1. Barlow-Stewart K., Keays D. Genetic discrimination in Australia. Journal of Law and Medicine. 8:2001;250-262.
2. Billings P.R., Kohn M.A., de Cuevas M., Beckwith J., Alper J.S., Natowicz M.R. Discrimination as a consequence of genetic Testing. American Journal Human Genetics. 50:1992;476-482.
3. Binedell J., Soldan J.R., Harper P.S. Predictive testing for Huntington's disease. II. qualitative findings from a study of uptake in South Wales Clinical Genetics. 54:1998;489-496.
4. Burgess M.M., d'Agincourt L. Genetic testing for hereditary disease. Attending to relational responsibility Journal of ClinicalEthics. 12:2001;361-372.
5. Cox S.M. Personal perspectives on genetic testing for Huntington's disease. A collection of stories:1999;Huntington Society of Canada, Kitchener, Ont., Canada.
6. Cox S.M., McKellin W. 'There's this thing in our family'. Predictive testing and the construction of risk for Huntington disease Sociology of Health and Illness. 21(5):1999;622-646.
7. Davidson M.E., Weingarten K., Pollin T.I., Wilson M.A., Wilker N., Hsu N., Weiss O. Consumer perspectives on genetic testing. Implications for building family centred public policies Family Systems and Health. 18:2000;217-235.
8. Decruyenaere M., Evers-Kiebooms G., Boogaerts A., Cassiman J.J., Cloostermans T., Demyttenaere K., Dom R., Fryns J.P., Van Den Berghe H. Predictive testing for Huntington's disease. Risk perception, reasons for testing and psychological profile of test applicants Genetic Counselling. 6(1):1995;1-13.
9. Decruyenaere M., Evers-Kiebooms G., Boogaerts A., Cloostermans T., Cassiman J.J., Demyttenaere K., Dom R., Fryns J.P., Berghe H. Non-participation in predictive testing for Huntington's disease. Individual decision-making, personality and avoidant behaviour in the family European Journal of Human Genetics. 5:1997;351-363.
10. Evers-Kiebooms G., Cassiman J.J., Van den Berghe H. Attitudes towards predictive testing in Huntington's disease. A recent survey in Belgium Journal of Medical Genetics. 24:1987;275-279.
11. Evers-Kiebooms G., Decruyenaere M. Predictive testing for Huntington's disease. A challenge for persons at risk and for professionals Patient Education and Counseling. 35:1998;15-26.
12. Evers-Kiebooms G., Welkenhuysen M., Claes E., Decruyenaere M., Denayer L. The psychological complexity of predictive testing for late onset neuro-genetic diseases and hereditary cancers. Implications for multidisciplinary counselling and for genetic education Social Science and Medicine. 51(6):2000;831-841.
13. Folstein S.E. Huntington's disease. A disorder of families:1989;The Johns Hopkins University Press, Baltimore, MD.
14. Gray A. Genes and generations. Living with Huntington's disease:1995;Wellington Huntington's Disease Association, New Zealand.
15. Hallowell N. Doing the right thing. Genetic risk and responsibility Sociology of Health & Illness. 21(5):1999;597-621.
16. Harper P.S. Huntington's disease. 2nd ed. 1996;Saunders Company Ltd, London.
17. Hayden M.R. Predictive testing for Huntington's disease. The calm after the storm Lancet. 356(9246):2000;1944.
18. Heimler A., Zanko A. Huntington disease. A case study describing the complexities and nuances of predictive testing of monozygotic twins Journal of Genetic Counseling. 4(2):1995;125-137.
19. Huggins M., Block M., Wiggins S., Adams S., Sucherowsky O., Trew M., Klimek M.L., Greenberg C.R., Eleff M., Thompson L.P., Knight J., MacLeod P., Girard K., Theilmann J., Hayden M.R. Predictive testing for Huntington disease in Canada. Adverse effects and unexpected results in those receiving deceased risk American Journal of Human Genetics. 42:1992;509-515.
20. Huibers A.K., van 't Spijker A. The autonomy paradox: Predictive testing and autonomy. Three essential problems Patient Education & Counseling. 35:1998;53-62.
21. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell. 72:1993;971-983.
22. Guidelines for the molecular genetic predictive testing in Huntington's disease. Journal of Medical Genetics. 31:1994;555-559.
23. Khoury M.J., Burke W., Thomson E.J. Genetics and public health in the 21st century. Using genetic information to improve health and prevent disease:2000;Oxford University Press, New York.
24. Marteau T., Richards M. The troubled helix. social and psychological implications of the new human genetics:1995;Cambridge University Press, Cambridge.
25. Minichiello V., Aroni R., Timewell E., Alexander L. In-depth interviewing. Principles, techniques, analysis:1995;Longman, Melbourne.
26. Nelkin D., Lindee M.S. The DNA mystique. The gene as a cultural icon:1995;W.H. Freeman and Company, New York.
27. O'Sullivan G., Sharman E., Short S. Goodbye normal gene. Confronting the genetic revolution:1999;Pluto Press, Sydney.
28. Palmer G.R., Short S.D. Health care & public policy. An Australian analysis:2000;Macmillan, Australia.
29. Parsons E.P., Atkinson P. Lay constructions of genetic risk. Sociology of Health and Illness. 14(4):1992;437-455.
30. Petersen A., Bunton R. The new genetics and the public's health. 2002;Routledge, London.
31. Richards M.P.M. The new genetics. Some issues for social scientists Sociology of Health and Illness. 15(5):1993;566-586.
32. Richards M.P.M., Ponder M. Lay understanding of genetics. A test of a hypothesis Journal of Medical Genetics. 33:1996;1032-1036.
33. Rolland J.S. Families and genetic fate. A millennial challenge Families, Systems and Health. 17:1999;123-132.
34. Schutz A. The phenomenology of the social world. 1967;Heinemann Educational Books, London.
35. Sobel S., Cowan D.B. Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics. 90:2000;49-59.
36. Sobel S., Cowan D.B. The process of family reconstruction after DNA testing for Huntington disease. Journal of Genetic Counseling. 9(3):2000;237-251.
37. Smith J.A., Michie S., Stephenson M., Quarrell O. Risk perception and decision-making processes in candidates for genetic testing for Huntington's disease. An interpretive phenomenological analysis Journal of Health Psychology. 7(2):2002;131-144.
38. Street E., Soldan J. A conceptual framework for the psychosocial issues faced by families with genetic conditions. Families, Systems and Health. 16(3):1998;217-232.
39. Tassiker R., Savulescu J., Skene L., Marshall P., Fitzgerald L., Delatycki M.B. Prenatal diagnosis requests for Huntington's disease where the father is at risk and does not want to know his genetics status. Clinical, legal and ethical viewpoints British Medical Journal. 326:2003;331-333. (in press).
40. Taswell H.F., Sholtes S. Predictive genetic testing. A story of one family Family, Systems and Health. 17(1):1999;111-121.
41. Taylor S.D. A case study of genetic discrimination. Advocacy and social work within a new context Australian Social Work. 51(4):1998;51-57.
42. Taylor, S.D. (1999). Predictive testing for Huntington's disease: Psychosocial contexts and decision-making. Unpublished Ph.D. dissertation, University of Tasmania, Australia.
43. Terrenoire G. Huntington's disease and the ethics of genetic prediction. Journal of Medical Ethics. 18:1992;79-85.
44. Tibben A., Frets M.F., Van de Kamp J.J.P., Niermeijer M.F., Vegter-van der Vlis M., Roos R.A.C., van Ommen G.J.B., Duivenvoorden H.J., Verhage F. Pre-symptomatic DNA-testing for Huntington's disease. Pretest attitudes and expectations of applicants and their partners in the Dutch program American Journal of Medical Genetics (Neuro-psychiatric Genetics). 48:1993;10-16.
45. Tyler A. Social and psychological aspects of Huntington's disease. Harper P.S. Huntington's disease. 2nd Ed. 1996;Saunders, London. (Chapter 5).
46. Van der Steenstraten I.M., Tibben A., Roos R., van de Kamp J.J.P., Niermeijer M. Predictive testing for Huntington's disease. Non-participants compared with participants in the Dutch program American Journal of Human Genetics. 55:1994;618-625.
47. Wexler N.S. Genetic Russian roulette. The experience of being "at risk" for Huntington's disease Kessler S. Genetic counselling: Psychological dimensions. 1979;Academic Press, London. (Chapter 12).
48. Wilke J. From a survivor. The emotional experience of genetic testing Journal of Psychosocial Nursing and Mental Health Services. 33(4):1995;28-37.
49. Williams G., Popay J. Lay knowledge and the privilege of experience. Gabe J., Kelleher D., Williams G. Challenging medicine. 1994;34-34 Routledge, London. (Chapter 7).