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

Journal of Genetic Counseling

Volumn 15, Issue 1, 2006, Pages 51-59

  Guillemin, Marilys ^a   Gillam, Lynn ^a  

^a UNIVERSITY OF MELBOURNE   (Australia)

Author keywords

Deafness; Genetic testing; Informed choice; Pre natal diagnosis; Qualitative research; Termination of pregnancy

Indexed keywords

ACCESS TO INFORMATION; ADULT; ARTICLE; ATTITUDE; CLINICAL ARTICLE; DECISION MAKING; EXPERIENCE; FEMALE; GENE IDENTIFICATION; GENETIC ANALYSIS; GENETIC COUNSELING; HEARING IMPAIRMENT; HUMAN; MALE; MEDICAL INFORMATION; PHYSICAL DISABILITY; PREGNANCY TERMINATION; PRENATAL DIAGNOSIS; QUALITATIVE ANALYSIS; RESEARCH;

ABORTION, EUGENIC; ADOLESCENT; ADULT; ATTITUDE TO HEALTH; DEAFNESS; FEMALE; GENETIC SCREENING; HUMANS; INTERVIEWS; MALE; MIDDLE AGED; PRENATAL DIAGNOSIS;

EID: 33646460403     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-005-9003-6     Document Type: Article

References (25)

1. Baker, C., & Battison, R. (Eds.) (1980). Sign language and the Deaf community: Essays in the honor of William C. Stokoe. Silver Spring: National Association of the Deaf.
2. Brunger, J. W., Murray, G. S., O'Riordan, M., Matthews, A. L., Smith, R. J. H., & Robin, N. H. (2000). Parental attitudes toward genetic testing for pediatric deafness. Am J Human Genet, 67, 1621-1625.
3. Cleve, J. V. (Ed.) (1987). Gallaudet Encyclopedia of Deaf people and Deafness. New York: McGraw-Hill.
4. Corker, M. (1998). Deaf and disabled, or deafness disabled? Buckingham: Open University Press.
5. Coviello, D. A., Brambati, B., Tului, L., Percesepe, A., Sironi, F., Sahai, A., et al. (2004). First-trimester prenatal screening for the common 35delG GJB2 mutation causing prelingual deafness. Prenatal Diagn, 24, 631-634.
6. Gualandi, F., Martini, A., & Calzolari, E. (2003). Progress in understanding GJB2-linked deafness. Community Genet, 6(3), 125-132.
7. Kelsell, D. P., Dunlop, J., Stevens, H. P., Lench, N. J., Liang, J. N., Parry, G., et al. (1997). Connexin 26 mutations in hereditary non-syndromic sensorineural deafness. Nature, 357(6628), 80-83.
8. Lane, H. (2002). Do Deaf people have a disability? Sig Lang Stud, 2(4), 356-379.
9. Martinez, A., Linden, J., Schimmenti, L. A., & Palmer, C. G. S. (2003). Attitudes of the broader hearing, deaf, and hard-of-hearing community toward genetic testing for deafness. Genet Med, 5(2), 106-112.
10. Middleton, A., Hewison, J., & Mueller, R. (2001). Prenatal diagnosis for inherited deafness- what is the potential demand? J Genet Counsel, 10(2), 121-131.
11. Middleton, A., Hewison, J., & Mueller, R. F. (1998). Attitudes of deaf adults toward genetic testing for hereditary deafness. Am J Human Genet, 63, 1175-1180.
12. Nance, W. E. (2004). The genetics of deafness. Am J Med Genet, 130A, 1-2.
13. Parens, E., & Asch, A. (Eds.) (2000). Prenatal testing and the disability rights critique. Washington: Georgetown University Press.
14. Parker, M., Fortnum, H., Young, I., & Davis, A. (2000). Genetics and deafness: what do families want? J Med Genet, 37.
15. Preston, P. (1995). Mother father deaf: The heritage of difference. Soc Sci Med, 40(11), 1461-1467.
16. Raz, A. E. (2005). Disability rights, prenatal diagnosis and eugenics: A cross-cultural view. J Genet Counsel, 14(3), 183-187.
17. Saxton, M. (1987). Prenatal screening and discriminatory attitudes about disability. Women Health, 13(1), 220.
18. Saxton, M. (1997). Disability rights and selective abortion. In R. Solinger (Ed.), Abortion wars: A half century struggle. Berkeley and Los Angeles: University of California Press.
19. Senghas, R., & Monaghan, L. (2002). Signs of their times: Deaf communities and the culture of language. Annu Rev Anthropol, 31, 69-97.
20. Shakespeare, T. (1998). Choices and rights: Eugenics, genetics and disability equality. Disability and Society, 13(5), 665-681.
21. Skelton, T., & Valentine, G. (2003). 'It feels like being Deaf is normal': An exploration into the complexities of defining D/deafness and young D/deaf people's identities. Can Geographer, 47(4), 451-466.
22. Smith, R. J. H. (2004). Clinical application of genetic testing for deafness. Am J Med Genet, 130A, 8-12.
23. Stern, S. J., Amos, K. S., Murelle, L., Welch, K. O., Nance, W. E., & Pandya, A. (2002). Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss. J Med Genet, 39(6), 449-453.
24. Strauss, A., & Corbin, J. (1990). Basics of qualitative research. Grounded theory procedures and techniques. Newbury Park, California: Sage.
25. Taneja, P. R., Pandya, A., Foley, D. L., Nicely, L. V., & Arnos, K. S. (2004). Attitudes of deaf individuals towards genetic testing. Am J Med Genet, 130A, 17-21.