The relationship between the genetic counseling profession and the disability community: A commentary

作者: Anne C. Madeo , Barbara B. Biesecker , Campbell Brasington , Lori H. Erby , Kathryn F. Peters

DOI: 10.1002/AJMG.A.34054

关键词:

摘要: Since the inception of field genetic counseling, profession has had a tenuous relationship with disability community. Genetic counselors both offer prenatal diagnostic testing that allows individuals opportunity to avoid birth child and they advocate for rights who have disability. Some in community argued feel their lives disabled families judged by diagnosis attitudes service providers encounter clinical settings. Select voices from fear result developing technologies may contribute world less tolerant disabilities. The available empirical data suggest do little counteract these perspectives. Although limited, investigations into practices more negative perspective on disabilities than whose are directly affected them affect description disabling conditions setting. National Society Counselors, organization represents US publicly aligned itself abortion over disease advocacy organizations, thus subjecting perception bias. We possible solutions criticisms argue individually collectively, counseling professionals should develop identify opportunities fully support needs broader spectrum clients.

参考文章(57)
Jon Weil, Psychosocial Genetic Counseling in the Post-Nondirective Era: A Point of View Journal of Genetic Counseling. ,vol. 12, pp. 199- 211 ,(2003) , 10.1023/A:1023234802124
Robert G. Resta, Eugenics and Nondirectiveness in Genetic Counseling Journal of Genetic Counseling. ,vol. 6, pp. 255- 258 ,(1997) , 10.1023/A:1025624505382
TM Marteau, S Michie, M Bobrow, F Bron, Nondirectiveness in genetic counseling: an empirical study. American Journal of Human Genetics. ,vol. 60, pp. 40- 47 ,(1997)
Peter T. Rowley, Psychological aspects of genetic counseling American Journal of Human Genetics. ,vol. 38, pp. 99- 100 ,(1986)
KF Peters, F Kong, M Hanslo, BB Biesecker, Living with Marfan syndrome III. Quality of life and reproductive planning Clinical Genetics. ,vol. 62, pp. 110- 120 ,(2002) , 10.1034/J.1399-0004.2002.620203.X
Kelly E. Ormond, Carol J. Gill, Patrick Semik, Kristi L. Kirschner, Attitudes of Health Care Trainees About Genetics and Disability: Issues of Access, Health Care Communication, and Decision Making Journal of Genetic Counseling. ,vol. 12, pp. 333- 349 ,(2003) , 10.1023/A:1023953022290
Jennifer Roggenbuck, Janet E. Olson, Thomas A. Sellers, Carol Ludowese, Perception of genetic risk among genetic counselors. Journal of Genetic Counseling. ,vol. 9, pp. 47- 59 ,(2000) , 10.1023/A:1009481123596