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Attitudes of Deaf people to Genetics and Genetic Interventions A Bibliography Anna Middleton Ahmad, W., A. Darr, et al. (1998). “Deafness and ethnicity: services, policy and politics”. University of Bristol, The Policy Press. Ajzen, I. and M. Fishbein (1977). “Attitude-behaviour relations: a theoretical analysis and review of empirical research.” Psychological Bulletin 84: 888-918. American Medical Association (1994). “Ethical issues related to prenatal genetic testing.” Archives of Family Medicine 3: 633-642. Anstey KW (2002) Are attempts to have impaired children justifiable? Journal Medical Ethics 28:286-288 Arnos, K. S., J. Israel, et al. (1991). “Genetic counselling for the deaf: medical and cultural considerations.” Annals New York Academy Sciences 630: 212-222. Arnos, K. S., J. Israel, et al. (1992). “Genetic Counselling for the Deaf.” Otolaryngologic Clinics of North America 25(5): 953-971. Atkins, D. V. (1994). “Counseling children with hearing loss and their families”. In: Effective counseling in audiology. Perspectives and practice. J. G. Clark and F. N. Martin (Eds). Englewood Cliffs, NJ, Prentice Hall: 116-146. Autralasian Bioethics Information (2002) Designer babies/go ahead to screen out deafness. Friday 27 th Sep 2002 newsletter ISSSN 14462117 Backenroth, G. A. M. (1992). “Counselling persons with deafness and their social networks.” In: Rehabilitation counselling. Approaches in the field of disability. Robertson and Brown. (Eds) London, Chapman and Hall: 245-273. Bahan, B. (1989). “ What if... Alexander Graham Bell had gotten his way?” In: American Deaf Culture. W. S. Silver Spring, MD, Linstock Press: 83-87. Barringer, D. G., C. J. Strong, et al. (1993). “Screening procedures used to identify children with hearing loss.” American Annals of the Deaf 138: 420-426. Brand, H. J. and M. A. Coetzer (1994). “Parental response to their child's hearing impairment.” Psychological Reports 75: 1363-1368. British Deaf Association (2003) Policy Statement on Genetics, departmental publication, Lo ndon British Deaf News, June (1999). “Should children interpret?” British Deaf News, August (1999). “4,000 march for British sign language” Brunger J W, Murray GS, O’Riordan M, Matthews AL, Smith RJH, Robin NH (2000) Parental attitudes toward genetic testing for pediatric deafness. American Journal Human Genetics 67: 1621-1625 Burgess, M. M. (1994). “Ethical issues in prenatal testing.” Clinical Biochemistry 27(2): 87 -91. Chamba, R., W. Ahmad, et al. (1998). “Improving services for Asian deaf children: parents' and professionals' perspectives”. University of Bristol, The Policy Press. Chapple, A., C. May, et al. (1995). “Lay understanding of genetic disease: a British Study of families attending a genetic counseling service.” Journal of Genetic Counse ling 4(4): 281-301. Christiansen, J. B. (1991). “Sociological implications of hearing loss.” Annals New York Academy Sciences 630: 230-235. Chung, C. S. and K. S. Brown (1970). “Family studies of early childhood deafness ascertained through the Clarke School for the deaf.” American Journal Human Genetics 22: 357-366. Cohen MM Jr, Gorlin RJ (1995) Epidemiology, aetiology and genetic patterns. In: Gorlin RJ, Toriello HV, Cohen MM Jr (eds) Hereditary hearing loss and its syndromes. Oxford University Press, Oxford pp 921. Das, V. K. (1996). “Aetiology of bilateral sensorineural hearing impairment in children: a 10 year study.” Archives of Disease in Childhood 74: 8-12. Davis, A. C. (1989). “The prevalence of hearing impairment and reported hearing disability among adults in Great Britain.” International Journal Epidemiology18(4):911-7 Davis, A. (1993). “A public health perspective on childhood hearing impairment.” In: Paediatric Audiology 0 -5 years. B. McCormick (Ed) London, Whurr Publishers : 1-41. Davis, D. S. (1997). “Genetic dilemmas and the child's right to an open future.” Hastings Central Report 27(2): 7-15. Denoyelle, F., D. Weil, et al. (1997). “Prelingual deafness: high prevalence of a 30delG mutation in the connexin 26 gene.” Human Molecular Genetics 6(12): 2173-2177. Denoyelle, F., S. Marlin, et al. (1999). “Clinical features of the prevalent form of childhood deafness, DFNB1, due to a connexin-26 defect: implications for Genetic Counselling.” Lancet 353(9161): 1298-303. Dolnick, E. (1993). “Deafness as culture.” The Atlantic Monthly 272(3): 37-53. Estivill, X., P. Fortina, et al. (1998). “Connexin-26 mutations in sporadic and inherited sensorineural deafness.” Lancet 351: 394-398. Evers -Kiebooms, G., L. Denayer, et al. (1993). “Communit y attitudes towards prenatal testing for congenital handicap.” Journal of Reproductive and Infant Psychology 11: 21 -30. Ewing, I. R. and A. W. G. Ewing (1944). “Ascertainment of deafness in infancy and early childhood.” Journal Laryngology and Otology 59: 309-15. Fischel-Ghodsian, N. (1998). “Mitochondrial mutations and hearing loss: paradigm for mitochondrial genetics.” American Journal Human Genetics 62: 15-19. Fletcher JC (2002) Deaf like us: the Duchesneau-McCullough case. L’Observatoire de la genetique – Cadrages No 5 July/Aug Fraser, G. R. (1964). “Research in deafness in children”. L. Fisch. (Ed) Oxford, Blackwell: 10-13. Fraser, G. R. (1976). “The causes of profound deafness in childhood.” Baltimore, Maryland, John Hopkins University Press. Fraser, L, F,. M. Ryan, Z. Miedzybrodzka, M, Hall (1999) “Carrier screening for deafness genes: pregnant women's attitudes and willingness to pay” Journal Medical Genetics 36 suppl 1 British Human Genetics Conference, University of York Gallaudet University report, CADS 1987. “Annual survey of hearing impaired children and youths”. Washington DC, Gallaudet University. Garvican, L. (1998). “Effectiveness of genetic testing in certain diseases must be evaluated [letter]” British Medical Journal 317(7155). Gibbin, K. P. (1993). “Otological considerations in the first 5 years of life”. In: Paediatric audiology 0-5 years. B. McCormick.(Ed) London, Whurr. Gibson, W. P. R. (1991). “Opposition from deaf groups to the cochlear implant.” Medical Journal of Australia 155: 212-214. Gorlin, R. J., H. V. Toriello, et al. (1995) “Hereditary hearing loss and its syndromes”. New York, Oxford University Press. Groce, N. E. (1985). “Everyone here spoke sign language: hereditary deafness on Martha's Vineyard.” Cambridge, Harvard University Press. Grundfast, K. M. and J. Rosen (1992). “Ethical and cultural considerations in research on hereditary deafness.” Otolaryngologic Clinics of North America 25(5): 973-978. Hamner, T. J. and P. H. Turner (1990). “Parenting in contemporary society”. New Jersey Prentice Hall ,Englewood Cliffs Hereditary Deafness Newsletter of America (1995). “Dominant Progressive Hearing Loss”. Boys Town National Research Hospital, Omeha, NE Holmes, M. (1997). “Reply to foundation paper 2.” Deaf Worlds 13(2): 13-15. Hughes, D. C. (1997). “Paradigms and paradoxes: mouse (and human) models of genetic deafness.” Audiology and Neurootology 2: 3-11. Infertility Treatment Authority (2003) Policy in relation to the use of preimplantation genetic diagnosis for genetic testing. Departmental Policy, Melbourne, Victoria, Australia. [email protected] Israel, J., Ed. (1995). “An Introduction to Deafness: a Manual for Genetic Counsellors”. Washington, Genetic Services Centre, Gallaudet University. Jacobson, J. T. (1995). “Nosology of deafness.” Journal of the American Academy of Audiology 6: 15-27. Johnson, R. E. and C. J. Erting (1989). “Ethnicity and socialization in a classroom for deaf children”. In: The sociolinguistics of the Deaf community. C. Lucas. (Ed) San Diego, California, Academic Press, Inc: 41-83. Jordan, I. K. (1991). “Ethical issues in the genetic study of deafness.” Annals New York Academy Sciences 630: 236-239. Kalla, K., M. A. Pence, et al. (1996). “Hard of hearing and deaf individuals' kno wledge and interest in genetic counseling”. American Society of Human Genetics Conference, USA. Kapp, M. B. (1994). “Ethical and legal implications of advances in genetic testing technology”. Legal Medicine: 305-19. Kelley, P. M., D. J. Harris, et al. (1998). “Novel mutations in the connexin 26 gene (GJB2) that cause autosomal recessive (DFNB1) hearing loss.” American Journal Human Genetics 62: 792-9. Kelly J (2002) Designer baby to have perfect hearing. Herald Sun 21. Sep 2002 Kelsell, D. P., J. Dunlo p, et al. (1997). “Connexin 26 mutations in hereditary non-syndromic sensorineural deafness.” Nature 387(1 May): 80-83. Kluwin, T. N. and M. G. Gaustad (1991). “Predicting family communication choices.” American Annals of the Deaf 136(1): 28-34. Koester, L. S. and K. P. Meadow-Orlans (1990). “Parenting a deaf child: stress, strength, and support”. In: Educational and developmental aspects of deafness. D. Moores and K. P. Meadow-Orlans. (Eds) Washington, DC, Gallaudet University Press: 299-320. Kuhse, H. (1999). “Preventing genetic impairments: does it discriminate against people with disabilities?” In: Genetic information acquisition, access and control A. K. Thompson and R. F. Chadwick.(Eds) New York, Plenum Publishers: p17. Lane, H. (1984). “When the mind hears: a history of the deaf”. New York, Random House. Lench, N., M. Houseman, et al. (1998). “Connexin-26 mutations in sporadic non-syndromal sensorineural deafness [letter].” Lancet 351: 415. Levy N (2002) Deafness, culture and choice. Journal Medical Ethics 28(5): 284-5 Luterman, D. M. and M. Ross (1991). “When your child is deaf. A guide for parents”. Parkton, MD, York Press. Marazita, M., L. Ploughman, et al. (1993). “Genetic epidemiological studies of early-onset deafness in the US school- age population.” American Journal of Medical Genetics 46: 486-91. Marteau, T., S. Michie, et al. (1995). “Public attitudes towards the selection of desirable characteristics in children.” Journal of Medical Genetics 32(10): 796-8. Marteau, T. and M. Richards. (1996). (Eds) “The troubled helix: social and psychological implications of the new human genetics”. Cambridge, Cambridge University Press. Martinez A, Linden J, Schimmenti LA, Palmer CGS (2003) Attitudes of the broader hearing, deaf and hard of hearing community toward genetic testing for deafness. Genetics in Medicine 5(2) 106-112 Mason, S. (1993). “Electric response audiometry”. In: Paediatric audiology 0 -5 years. B. McCormick. (Ed) London, Whurr. McLellan F (2002) Controversy over deliberate conception of deaf child. The Lancet 359 issue 9314 p1315 Meadow, K. P. (1976). “Personality and social development of deaf persons”. In: Psychology of deafness for rehabilitation counselors. B. Bolton. (Ed) Baltimore, University Park: 67-80. Meadow-Orlans, K. P. (1990). “Research on developmental aspects of deafness”. 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