Attitudes to genetic testing for deafness: the importance of informed choice

Journal of Genetic Counseling
Marilys Guillemin, Lynn Gillam

Abstract

With recent progress in the identification of genes for deafness, it is highly likely that genetic testing, including pre-natal testing, for deafness will become more widely available. In a context where there are concerns about pre-natal testing, and where many in the Deaf community contest the understanding of deafness as a disability, it is important to examine the attitudes of Deaf/deaf people toward genetic testing. This qualitative study employed in-depth interviews to investigate the views about genetic testing for deafness of 19 participants, who were identified as functionally deaf or hearing impaired, or as belonging to the Deaf community. The key findings are that participants were generally supportive of genetic testing for deafness but only when full information about all relevant aspects of deafness is given to prospective users of genetics services. Participants emphasized informed choice, stating that information about medical and technological options for deaf people should be provided, together with information about communication, education, and the experience of being deaf. Although there was less support for pre-natal diagnosis and termination of pregnancy for deafness, most participants nonetheless felt th...Continue Reading

References

Jun 1, 1995·Social Science & Medicine·P Preston
Oct 3, 1998·American Journal of Human Genetics·A MiddletonR F Mueller
Oct 4, 2000·Journal of Medical Genetics·M J ParkerA C Davis
Nov 4, 2000·American Journal of Human Genetics·J W BrungerN H Robin
Oct 20, 2001·Disability & Society·Tom Shakespeare
Jan 5, 2002·Journal of Genetic Counseling·A MiddletonR Mueller
Mar 20, 2003·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Ariadna MartinezChristina G S Palmer
Sep 10, 2003·Human Fertility : Journal of the British Fertility Society·Peter SchwärzlerHanns-Kristian Rjosk
Jul 9, 2004·Community Genetics·Francesca GualandiElisa Calzolari
Aug 12, 2004·Prenatal Diagnosis·Domenico A CovielloAntonino Forabosco
Sep 16, 2004·American Journal of Medical Genetics. Part a·Richard J H Smith
Sep 16, 2004·American Journal of Medical Genetics. Part a·Patricia Rubal TanejaKathleen S Arnos
Dec 9, 2004·Journal of Deaf Studies and Deaf Education·William C Stokoe
Jun 17, 2005·Journal of Genetic Counseling·Aviad E Raz

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Citations

May 12, 2007·Journal of Genetic Counseling·Anna MiddletonMushtaq Ahmed
Nov 24, 2011·Journal of Community Genetics·Sandra Cooke-Hubley, Victor Maddalena
Jul 20, 2010·International Journal of Pediatric Otorhinolaryngology·Siqing FuGuanming Chen
Jun 22, 2010·European Journal of Obstetrics, Gynecology, and Reproductive Biology·Alan Jotkowitz, Ari Z Zivotofsky
Feb 24, 2010·Auris, Nasus, Larynx·Shino AbeKen Kitamura
May 3, 2008·Journal of Communication Disorders·Kathleen S Arnos
Jun 1, 2011·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Emma F FranceSally Wyke
Oct 6, 2017·Journal of Genetic Counseling·Marci M LesperanceBeverly M Yashar
Dec 19, 2006·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Sarah K BurtonArti Pandya
Aug 17, 2018·American Journal of Medical Genetics. Part a·Roger E StevensonAlka Chaubey
Jun 2, 2007·American Journal of Medical Genetics. Part a·Annie G SteinbergYuelin Li
Nov 20, 2020·Precision Clinical Medicine·Ryan K Thorpe, Richard J H Smith

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