Factors associated with experiences of genetic discrimination among individuals at risk for Huntington disease.
作者： Yvonne Bombard , JoAnne Palin , Jan M. Friedman , Gerry Veenstra , Susan Creighton
DOI: 10.1002/AJMG.B.31130
关键词:
摘要: The purpose of this study was to identify factors that are associated with experiencing genetic discrimination (GD) among individuals at risk for Huntington disease (HD). Multivariable logistic regression analysis used examine GD in data from a cross-sectional, self-report survey 293 HD. sample comprised 167 genetically tested respondents, and 66 who were not (80% response rate). Overall, learn they HD younger age (OR = 3.1; 95% CI: 1.5–6.2; P = 0.002), mutation-positive (OR = 2.8; 1.4–6.0; P = 0.006), or highly educated (OR = 2.7; 1.4–5.1; P = 0.002) more likely experience GD, particularly insurance, family, social settings. Further, insurance (OR = 0.97; 0.94–1.00; P = 0.038). This provides evidence some people than others. Individuals learned those Younger the setting. also report discrimination. These results provide direction clinical family discussions, counseling practice, policy aimed mitigating experiences GD. © 2010 Wiley-Liss, Inc.
sci-hub.se 参考文章(32)
Matthew A. Bower, Patricia McCarthy Veach, Dianne M. Bartels, Bonnie S. LeRoy, A survey of genetic counselors' strategies for addressing ethical and professional challenges in practice. Journal of Genetic Counseling. ,vol. 11, pp. 163- 186 ,(2002) , 10.1023/A:1015275022199
R Nedelcu, KR Blazer, BU Schwerin, P Gambol, P Mantha, GC Uman, JN Weitzel, Genetic discrimination: the clinician perspective. Clinical Genetics. ,vol. 66, pp. 311- 317 ,(2004) , 10.1111/J.1399-0004.2004.00303.X
K Forrest, SA Simpson, BJ Wilson, ER Van Teijlingen, L McKee, N Haites, E Matthews, To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics. ,vol. 64, pp. 317- 326 ,(2003) , 10.1034/J.1399-0004.2003.00142.X
Sandra D Taylor, Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives. Social Science & Medicine. ,vol. 58, pp. 137- 149 ,(2004) , 10.1016/S0277-9536(03)00155-2
Michael M. Burgess, Shelin Adam, Maurice Bloch, Michael R. Hayden, Dilemmas of anonymous predictive testing for Huntington disease: privacy vs. optimal care. American Journal of Medical Genetics. ,vol. 71, pp. 197- 201 ,(1997) , 10.1002/(SICI)1096-8628(19970808)71:2<197::AID-AJMG15>3.0.CO;2-9
A. Tibben, Genetic discrimination in Huntington's disease. BMJ. ,vol. 338, pp. 1399- 1400 ,(2009) , 10.1136/BMJ.B1281
Brenda J. Wilson, Karen Forrest, Edwin R. van Teijlingen, Lorna McKee, Neva Haites, Eric Matthews, Sheila A. Simpson, Family communication about genetic risk: the little that is known. Community Genetics. ,vol. 7, pp. 15- 24 ,(2004) , 10.1159/000080300
Jennifer M. Watson, Isabel C. Scarinci, Robert C. Klesges, Deborah Slawson, Bettina M. Beech, Race, Socioeconomic Status, and Perceived Discrimination among Healthy Women Journal of Women's Health & Gender-Based Medicine. ,vol. 11, pp. 441- 451 ,(2002) , 10.1089/15246090260137617
Susannah Baruch, Kathy Hudson, Civilian and Military Genetics: Nondiscrimination Policy in a Post-GINA World American Journal of Human Genetics. ,vol. 83, pp. 435- 444 ,(2008) , 10.1016/J.AJHG.2008.09.003
Nancy Krieger, Kevin Smith, Deepa Naishadham, Cathy Hartman, Elizabeth M. Barbeau, Experiences of discrimination: Validity and reliability of a self-report measure for population health research on racism and health Social Science & Medicine. ,vol. 61, pp. 1576- 1596 ,(2005) , 10.1016/J.SOCSCIMED.2005.03.006