Genetic selection for deafness: the views of hearing children of deaf adults

• Published in: Journal of medical ethics Vol. 35; no. 12; pp. 722 - 728
• Main Authors: Mand, C, Duncan, R E, Gillam, L, Collins, V, Delatycki, M B
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01-12-2009; Institute of Medical Ethics and BMJ Publishing Group; BMJ Publishing Group Ltd; BMJ Publishing Group LTD
• Subjects: Adolescent; Adult; Adults; Aged; Aged, 80 and over; Attitude to Health; Children; Children & youth; Clinical ethics; Deaf culture; Deafness; Deafness - diagnosis; Deafness - genetics; Deafness - psychology; Diagnosis; Disabilities; Disability; Embryos; Ethical aspects; Families & family life; Female; Fetuses; Genetic aspects; Genetic Counseling; Genetic research; Genetic Testing - ethics; Genetic Testing - psychology; Hearing loss; Hearing tests; Humans; Interviews as Topic; Male; Medical genetics; Middle Aged; Mutation; Parents; Parents & parenting; Parents - psychology; Patient Acceptance of Health Care - psychology; Prenatal Diagnosis - ethics; Prenatal Diagnosis - psychology; Quality of life; Reproductive technologies; Reproductive technology; Selection, Genetic; Young Adult
• ISSN: 0306-6800; 1473-4257
• DOI: 10.1136/jme.2009.030429

The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children of deaf adults (or CODAs, as they call themselves, and are widely known in the deaf community) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants (CODAs and health professionals) as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf (or “culturally deaf”) community. The similarities extended to their opinions regarding deafness not being a disability (45.5% believed deafness was a distinct culture rather than a disability), their ambivalence towards having hearing or deaf children (72.3% indicated no preference) and their general disapproval of the use of genetic technologies to select either for or against deafness (60% believed that reproductive technologies, when used to select for or against deafness, should not be available to the community).