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Clinical ethics
Genetic selection for deafness: the views of hearing children of deaf adults
  1. C Mand1,2,3,
  2. R E Duncan1,2,4,5,
  3. L Gillam4,6,
  4. V Collins1,2,
  5. M B Delatycki1,2,7
  1. 1
    The Bruce Lefroy Centre for Genetic Health Research, Royal Children’s Hospital, Parkville, VIC, Australia
  2. 2
    Murdoch Childrens Research Institute, Royal Children’s Hospital, Parkville, VIC, Australia
  3. 3
    Monash University, Clayton, VIC, Australia
  4. 4
    Children’s Bioethics Centre, Royal Children’s Hospital, Parkville, VIC, Australia
  5. 5
    Department of Paediatrics, University of Melbourne, Melbourne, Parkville, VIC, Australia
  6. 6
    Centre for Health and Society, University of Melbourne, Melbourne, Parkville, VIC, Australia
  7. 7
    Genetic Health Services Victoria, Royal Children’s Hospital, Parkville, VIC, Australia
  1. Correspondence to Associate Professor Martin B Delatycki, Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Royal Children’s Hospital, Flemington Road, Parkville, 3052, Victoria, Australia; martin.delatycki{at}ghsv.org.au

Abstract

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).

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Footnotes

  • Competing interests None.

  • MBD is an NHMRC practitioner fellow and RD is an NHMRC research fellow.

  • Provenance and Peer review not commissioned; externally peer reviewed.

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