Deaf Adults' Reasons for Genetic Testing Depend on Cultural Affiliation: Results From a Prospective, Longitudinal Genetic Counseling and Testing Study

被引：27

作者：

Boudreault, Patrick ^{[2
]}

Baldwin, Erin E.

Fox, Michelle

Dutton, Loriel

Tullis, LeeElle

Linden, Joyce ^{[2
]}

Kobayashi, Yoko ^{[2
]}

Zhou, Jin

Sinsheimer, Janet S.

Sininger, Yvonne

Grody, Wayne W.

Palmer, Christina G. S. ^{[1
]}

机构：

[1] Univ Calif Los Angeles, Semel Inst, Los Angeles, CA 90024 USA

[2] Calif State Univ Los Angeles, Los Angeles, CA 90032 USA

来源：

JOURNAL OF DEAF STUDIES AND DEAF EDUCATION | 2010年 / 15卷 / 03期

关键词：

CONNEXIN; 26; GENE; HEARING-LOSS; SELF-ESTEEM; ATTITUDES; IDENTITY; MUTATIONS; GJB2; LIFE;

D O I：

10.1093/deafed/enq012

中图分类号：

G76 [特殊教育];

学科分类号：

040109 ;

摘要：

This article examines the relationship between cultural affiliation and deaf adults' motivations for genetic testing for deafness in the first prospective, longitudinal study to examine the impact of genetic counseling and genetic testing on deaf adults and the deaf community. Participants (n = 256), classified as affiliating with hearing, Deaf, or both communities, rated interest in testing for 21 reasons covering 5 life domains. Findings suggest strong interest in testing to learn why they are deaf, but little interest in using it for decisions about a partner or having children. Culturally mediated variation was also demonstrated. Deaf and both communities groups viewed testing as useful for more life domains than the hearing community group. Deaf and both communities had similar motivations related to further exploration, understanding, or strengthening of deafness. Motivations related to "hearing" were also relevant for both communities. We conclude that cultural affiliation is an important factor for constructing motivations for genetic testing.

引用

页码：209 / 227

页数：19

共 52 条

[11] BACK-TRANSLATION FOR CROSS-CULTURAL RESEARCH [J].

BRISLIN, RW .

JOURNAL OF CROSS-CULTURAL PSYCHOLOGY, 1970, 1 (03) :185-216

[12]

Brueggemann BrendaJo., 2009, DEAF SUBJECTS IDENTI

[13] Parental attitudes toward genetic testing for pediatric deafness [J].

Brunger, JW ;

Murray, GS ;

O'Riordan, M ;

Matthews, AL ;

Smith, RJH ;

Robin, NH .

AMERICAN JOURNAL OF HUMAN GENETICS, 2000, 67 (06) :1621-1625

[14] A focus group study of consumer attitudes toward genetic testing and newborn screening for deafness [J].

Burton, Sarah K. ;

Withrow, Kara ;

Arnos, Kathleen S. ;

Kalfoglou, Andrea L. ;

Pandya, Arti .

GENETICS IN MEDICINE, 2006, 8 (12) :779-783

[15]

Cohn ES, 1999, AM J MED GENET, V89, P130, DOI 10.1002/(SICI)1096-8628(19990924)89:3<130::AID-AJMG3>3.3.CO

[16]

2-D

[17] Genetic testing for hearing loss: Different motivations for the same outcome [J].

Dagan, O ;

Hochner, H ;

Levi, H ;

Raas-Rothschild, A ;

Sagi, M .

AMERICAN JOURNAL OF MEDICAL GENETICS, 2002, 113 (02) :137-143

[18] A deletion involving the connexin 30 gene in nonsyndromic hearing impairment. [J].

del Castillo, I ;

Villamar, M ;

Moreno-Pelayo, MA ;

del Castillo, FJ ;

Alvarez, A ;

Tellería, D ;

Menéndez, I ;

Moreno, F .

NEW ENGLAND JOURNAL OF MEDICINE, 2002, 346 (04) :243-U1

[19] Prelingual deafness: high prevalence of a 30delG mutation in the connexin 26 gene [J].

Denoyelle, F ;

Weil, D ;

Maw, MA ;

Wilcox, SA ;

Lench, NJ ;

AllenPowell, DR ;

Osborn, AH ;

Dahl, HHM ;

Middleton, A ;

Houseman, MJ ;

Dode, C ;

Marlin, S ;

BoulilaElGgaied, A ;

Grati, M ;

Ayadi, H ;

BenArab, S ;

Bitoun, P ;

LinaGranade, G ;

Godet, J ;

Mustapha, M ;

Loiselet, J ;

ElZir, E ;

Aubois, A ;

Joannard, A ;

Levilliers, J ;

Garabedian, EN ;

Mueller, RF ;

Gardner, RJM ;

Petit, C .

HUMAN MOLECULAR GENETICS, 1997, 6 (12) :2173-2177

[20] Reproductive liberty and deafness - Clause 14(4)(9) of embryo bill should be amended or deleted [J].

Emery, Steve ;

Burke, Teresa Blankmeyer ;

Middleton, Anna ;

Belk, Rachel ;

Turner, Graham .

BRITISH MEDICAL JOURNAL, 2008, 336 (7651) :976-976

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