Stigma and Genetic Risk: Perceptions of Stigma among Those at Risk for Huntington Disease (HD)Footnote∗

Supported by the Newfoundland and Labrador Centre for Applied Health Research.

References

• Alonzo , A. and Reynolds , N. 1995 . Stigma, HIV and AIDs: An exploration and elaboration of a stigma trajectory . Social Science & Medicine , 41 ( 3 ) : 303 – 315 .
   PubMed Web of Science ®Google Scholar
• Barlow-Stewart , K. and Keays , D. 2001 . Genetic discrimination in Australia . Journal of Law & Medicine , 8 : 250 – 262 .
   Google Scholar
• Beck , U. 1992 . Risk Society , London : Sage .
   Google Scholar
• Billings , P. , Kohn , M. , Cuevas , M. , Beckwith , J. , Alper , J. and Natowicz , M. 1992 . Discrimination as a consequence of genetic testing . American Journal of Human Genetics , 50 : 476 – 482 .
   PubMed Web of Science ®Google Scholar
• Binedell , J. , Soldan , J.R. and Harper , P.S. 1998 . Predictive testing for Huntington's disease: II. Qualitative findings from a study of uptake in South Wales . Clinical Genetics , 54 : 489 – 496 .
   PubMed Web of Science ®Google Scholar
• Camp , D. , Finlay , W. and Lyons , E. 2002 . Is low self-esteem an inevitable consequence of stigma? An example from women with chronic mental health problems . Social Science & Medicine , 55 : 823 – 834 .
   PubMed Web of Science ®Google Scholar
• Carr , R. and Gramling , L. 2004 . Stigma: A health barrier for women with HIV/AIDS . Journal of the Association of nurses in AIDs care , 15 ( 5 ) : 30 – 39 .
   PubMed Web of Science ®Google Scholar
• 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 , 11 ( 5 ) : 351 – 367 .
   PubMedGoogle Scholar
• Chapman , E. and Smith , J. 2002 . Interpretative phenomenological analysis and the new genetics . Journal of Health Psychology , 7 ( 2 ) : 125 – 130 .
   PubMed Web of Science ®Google Scholar
• Cox , S. and McKellin , W. 1999 . ‘There's this thing in our family’ Predictive testing and the construction of risk for Huntington disease . Sociology of Health & Illness , 21 ( 5 ) : 622 – 646 .
   Web of Science ®Google Scholar
• Cox , S. 2002 . “ Introduction ” . In Personal perspectives on genetic testing for Huntington disease , Edited by: Cox , S. ON, , Canada : Huntington Society of Canada .
   Google Scholar
• Cox , S. 2003 . Stories in decisions: How at-risk individuals decide to request predictive testing for Huntington disease . Qualitative Sociology , 26 ( 2 ) : 257 – 280 .
   Google Scholar
• Crandall , C. and Moriarty , D. 1995 . Physical illness stigma and social rejection . British Journal of Social Psychology , 34 : 67 – 83 .
   PubMed Web of Science ®Google Scholar
• Crandall , C. 2000 . “ Ideology and lay theories of stigma: The justification of stigmatization ” . In The social psychology of stigma , Edited by: Heatherton , T. , Kleck , R. , Hebl , M. and Hull , J. 127 – 150 . New York : The Guilford Press .
   Google Scholar
• Crocker , J. , Major , B. and Steele , C. 1998 . “ Social Stigma ” . In The Handbook of Social Psychology , 4th , Edited by: Gilbert , D. , Fiske , S. and Lindzey , G. Vol. 1 , 504 – 553 . New York : McGraw Hill .
   Google Scholar
• Deaux , K. and Ethier , K. 1998 . “ Negotiating social identity ” . In Prejudice: The target's perspective , Edited by: Swim , J. and Stangor , C. 301 – 323 . San Diego, CA : Academic Press .
   Google Scholar
• DePalma , M. , Madey , S.F. , Tillman , T.C. and Wheeler , J. 1999 . Perceived patient responsibility and belief in a just world affect helping . Basic & Applied Social Psychology , 21 ( 2 ) : 131 – 137 .
   Web of Science ®Google Scholar
• Diener , E. and Diener , C. 1996 . Most people are happy . Psychological Science , 7 : 181 – 185 .
   Web of Science ®Google Scholar
• Dijker , A.J. and Raeijmaekers , F. 1999 . The influence of seriousness and contagiousness of disease on emotional reactions to ill persons . Psychology & Health , 14 : 131 – 141 .
   Web of Science ®Google Scholar
• Dijker , A.J. and Koomen , W. 2003 . Extending Weiner's attribution-emotion model of stigmatization of ill persons . Basic & Applied Social Psychology , 25 : 51 – 68 .
   Web of Science ®Google Scholar
• Drury , C. and Louis , M. 2002 . Exploring the association between body weight, stigma of obesity and health care avoidance . Journal of American Academe Nursing Practice , 14 ( 12 ) : 554 – 561 .
   PubMedGoogle Scholar
• Etchegary, H. 2005: “I have the gene, but I don't have Huntington disease”: Negotiating genetic risk. Unpublished doctoral dissertation. Memorial University, St. John's, NL.
   Google Scholar
• European Commission 2002: Genetic testing: Patients' rights, insurance and employment. A survey of regulations in the European Union. http://europa.eu.int/comm/research/biosociety/pdf/genetic_testing_eur20446.pdf (Accessed: 4 May 2006 ).
   Google Scholar
• Evers-Kiebooms , G. and Decruyenaere , M. 1998 . Predictive testing for Huntington's Disease: A challenge for persons at risk and for professionals . Patient Education and Counseling , 35 : 15 – 26 .
   PubMed Web of Science ®Google Scholar
• Evers-Kiebooms , G. , Welkenhuysen , M. , Claes , E. , Decruyenaere , M. and Denayer , L. 2000 . The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: Implications for multidisciplinary counseling and for genetic education . Social Science & Medicine , 51 : 831 – 841 .
   PubMed Web of Science ®Google Scholar
• Frable , D. , Platt , L. and Hoey , S. 1998 . Concealable stigmas and positive self- perceptions: Feeling better around similar others . Journal of Personality & Social Psychology , 74 ( 4 ) : 909 – 922 .
   PubMed Web of Science ®Google Scholar
• GeneWatch UK 2006: Genetic discrimination by insurers and employers: Still looming on the horizon. http://www.genewatch.org/HumanGen/Publications/Reports/GeneticTestingUpdate2006.pdf (Accessed: 3 May 2006 ).
   Google Scholar
• Goffman , E. 1963 . Stigma: Notes on the management of spoiled identity , Englewood Cliffs, NJ : Prentice-Hall .
   Google Scholar
• Gray , D. 2002 . “Everybody just freezes. Everybody is just embarrassed:” Felt and enacted stigma among parents of children with high functioning autism . Sociology of Health & Illness , 24 ( 6 ) : 737 – 749 .
   Web of Science ®Google Scholar
• Hall , M. and Rich , S. 2000 . Patients' fear of genetic discrimination by health insurers: The impact of legal protections . Genetics in Medicine , 2 ( 4 ) : 214 – 221 .
   PubMed Web of Science ®Google Scholar
• Harper , P. 1996 . Huntington's disease , London : Saunders Publishing .
   Google Scholar
• Hudson , K. , Rothenberg , K. , Andrews , L. , Kahn , M. and Collins , F. 1995 . Genetic discrimination and health insurance: An urgent need for reform . Science , 270 : 391 – 393 .
   PubMed Web of Science ®Google Scholar
• Jones , E.E. , Farina , A. , Hastorf , A.H. , Markus , H. , Miller , D.T. and Scott , R.A. 1984 . Social stigma: The psychology of marked relationships , New York : Freeman .
   Google Scholar
• Katz , I. 1981 . Stigma: A social psychological analysis , New Jersey : Erlbaum .
   Google Scholar
• Kenea , R. 1994 . “ The Human Genome Project: Creator of the potentially sick, potentially vulnerable and potentially stigmatized? ” . In Life and death under high technology medicine , Edited by: Robinson , I. 49 – 64 . London : Manchester University Press .
   Google Scholar
• Leung , T. and Leung , C. 2002 . Insight into the psychological aspects of Huntington's disease in Chinese society . International Journal of Psychiatry in Medicine , 32 ( 3 ) : 305 – 310 .
   PubMed Web of Science ®Google Scholar
• Lock , M. 2000 . “ Accounting for disease and distress: Morals of the normal and abnormal ” . In The handbook of social studies in health and medicine , Edited by: Albrecht , G.L. , Fitzpatrick , R. and Scrimshaw , S.C. 259 – 276 . Thousand Oaks, CA : Sage .
   Google Scholar
• Low , L. , King , S. and 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 , 317 : 1632 – 1635 .
   PubMed Web of Science ®Google Scholar
• Lupton , D. 1999 . Risk , London : Routledge .
   Google Scholar
• Mays , N. and Pope , C. 2000 . Assessing quality in qualitative research . British Medical Journal , 320 : 50 – 52 .
   PubMed Web of Science ®Google Scholar
• Meiser , B. and Dunn , S. 2000 . Psychological impact of genetic testing for Huntington Disease: An update of the literature . Journal of Neurology, Neurosurgery, & Psychiatry , 69 : 574 – 578 .
   PubMed Web of Science ®Google Scholar
• Menec , V.H. and Perry , R.P. 1998 . Reactions to stigmas among Canadian students: Testing an attribution-affect-help judgment model . The Journal of Social Psychology , 138 ( 4 ) : 443 – 453 .
   Web of Science ®Google Scholar
• Menec , V.H. and Weiner , B. 2000 . Observers' reactions to genetic testing: The role of hindsight bias and judgments of responsibility . Journal of Applied Social Psychology , 30 ( 8 ) : 1670 – 1690 .
   PubMed Web of Science ®Google Scholar
• Nelkin , D. and Lindee , S. 1995 . The DNA mystique: The gene as cultural icon , New York : W.H. Freeman .
   Google Scholar
• Oscapella, E. 2000: Genetics, privacy and discrimination. http://cbac-cccb.ca/epic/internet/incbac-cccb.nsf/en/ah00477e.html (Accessed: 3 May 2006 ).
   Google Scholar
• Pfeffer , N. , McCarthy-Veach , P. and LeRoy , B. 2003 . An investigation of genetic counselors' discussions of genetic discrimination with cancer risk patients . Journal of Genetic Counseling , 12 ( 5 ) : 419 – 438 .
   PubMedGoogle Scholar
• Sankar , P. , Cho , M. , Wolpe , P. and Schairer , C. 2006 . What is in a cause? Exploring the relationship between genetic cause and felt stigma . Genetics in Medicine , 8 ( 1 ) : 33 – 42 .
   PubMed Web of Science ®Google Scholar
• Savulescu , J. and Kerin , J. 1999 . The “geneticization” of disease stigma . Lancet , 354 : S16
   Web of Science ®Google Scholar
• Scrambler , G. and Hopkins , A. 1986 . Being epileptic: Coming to terms with stigma . Sociology of Health & Illness , 8 ( 1 ) : 26 – 45 .
   Web of Science ®Google Scholar
• Scrambler , G. and Hopkins , A. 1988 . “ Accommodating epilepsy in families ” . In Living with chronic illness , Edited by: Anderson , R. and Bury , M. London : Unwin Hyman Ltd .
   Google Scholar
• Scrambler , G. 1998 . Stigma and disease: Changing paradigms . Lancet , 352 : 1054 – 1055 .
   PubMed Web of Science ®Google Scholar
• Silverman , D. 2000 . Doing qualitative research: A practical handbook , London : Sage .
   Google Scholar
• Smith , J.A. , Flowers , P. and Osborn , M. 1997 . “ Interpretative phenomenological analysis and the psychology of health and illness ” . In Material discourses of health and illness , Edited by: Yardley , L. 68 – 91 . London : Routledge .
   Google Scholar
• Smith , J.A. , Jarman , M. and Osborn , M. 1999 . “ Doing interpretative phenomenological analysis ” . In Qualitative health psychology: Theories and methods , Edited by: Murray , M. and Chamberlain , K. 218 – 240 . London : Sage .
   Google Scholar
• Smith , J.A. , Michie , S. , Stephenson , M. and Quarrell , O. 2002 . Risk perception and decision-making processes in candidates for genetic testing for Huntington's disease: An interpretative phenomenological analysis . Journal of Health Psychology , 7 ( 2 ) : 131 – 144 .
   PubMed Web of Science ®Google Scholar
• Sobel , S. and Cowan , D. 2000 . Impact of genetic testing for Huntington disease on the family system . American Journal of Medical Genetics , 90 : 49 – 59 .
   PubMed Web of Science ®Google Scholar
• Swim , J. and Stangor , C. 1998 . “ Introduction ” . In Prejudice: The target's perspective , Edited by: Swim , J. and Stangor , C. San Diego, CA : Academic Press .
   Google Scholar
• Taylor , S. 2004 . Predictive genetic test decisions for Huntington's disease: Context, appraisal and new moral imperatives . Social Science & Medicine , 58 ( 1 ) : 137 – 149 .
   PubMed Web of Science ®Google Scholar
• Tibben , A. , Duivenvoorden , H. , Niermeijer , M. , Vegter-van der , Vlis , Roos , M. and Verhage , F. 1994 . Psychological effects of presymptomatic DNA testing for Huntington's disease in the Dutch program . Psychosomatic Medicine , 56 : 526 – 532 .
   PubMed Web of Science ®Google Scholar
• Tibben , A. , Timman , R. , Bannink , E.C. and Duivenvoorden , H.J. 1997 . Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners . Health Psychology , 16 : 20 – 35 .
   PubMed Web of Science ®Google Scholar
• van't Spijker , A. and ten Kroode , H. 1997 . Psychological aspects of genetic counseling: A review of the experience with Huntington's disease . Patient Education and Counseling , 32 : 33 – 40 .
   PubMed Web of Science ®Google Scholar
• Weiner , B. 1995 . Judgments of responsibility: A foundation for a theory of social conduct , New York, NY : Guilford .
   Google Scholar
• Williams , J. , Schutte , D. , Evers , C. and Holkup , P. 2000 . Redefinition: Coping with normal results from predictive gene testing for neurodegenerative disorders . Research in Nursing & Health , 23 : 260 – 269 .
   PubMed Web of Science ®Google Scholar
• Wilson , B. , Forrest , K. , van Teijlingen , E. , McKee , L. , Haites , N. , Matthews , E. and Simpson , S. 2004 . Family communication about genetic risk: The little that is known . Community Genetics , 7 : 15 – 24 .
   PubMedGoogle Scholar
• Wright , E. , Gronfein , W. and Owens , T. 2000 . Deinstitutionalization, social rejection, and the self esteem of former mental patients . Journal of Health & Social Behavior , 41 ( 1 ) : 68 – 90 .
   PubMed Web of Science ®Google Scholar