Letters Reproductive liberty and deafness

Clause 14(4)(9) of embryo bill should be amended or deleted

BMJ 2008; 336 doi: https://doi.org/10.1136/bmj.39563.495741.80 (Published 01 May 2008) Cite this as: BMJ 2008;336:976
  1. Steve Emery, research fellow1,
  2. Teresa Blankmeyer Burke, bioethicist2,
  3. Anna Middleton, consultant research genetic counsellor3,
  4. Rachel Belk, genetic counsellor and NIHR research fellow4,
  5. Graham Turner, chair of interpreting and translation studies5
  1. 1Department of Languages and Intercultural Studies, School of Management and Languages, Heriot-Watt University, Edinburgh EH14 4AS
  2. 2Philosophy and Religion Department, Gallaudet University, Washington, DC 20002, USA
  3. 3Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff CF14 4XN
  4. 4Faculty of Medicine and Human Sciences, University of Manchester, Manchester M13 9PT
  5. 5Department of Languages and Intercultural Studies, School of Management and Languages, Heriot-Watt University, Edinburgh EH14 4AS
  1. Middletona1{at}cardiff.ac.uk

    Amendments to the Human Fertilisation and Embryology Act 1990 are currently passing through the UK Houses of Parliament.1 Clause 14, section 4, number 9 (lines 23-30, page 10) says that people or embryos known to have a gene, chromosome, or mitochondrion abnormality that confers a significant risk of serious physical or mental disability, serious illness, or other serious medical condition must not be preferred over those not known to have an abnormality.

    This clause has been added to prevent positive selection of deaf donors deliberately to result in a deaf child, and one outcome would be that deaf parents could not use preimplantation diagnosis to select embryos with genes for deafness.

    If passed, the bill would make it illegal for a deaf adult to donate gametes for in vitro fertilisation, even to close relatives. It would be illegal for deaf parents, using preimplantation genetic diagnosis, to implant embryos with the genes for deafness if normal embryos were available.

    Actively selecting for deafness is controversial. However, research indicates that few people want to do this,2 3 and requests to clinics for the selection of “disability” are low.4 So, is it necessary to legislate against something that is unlikely to happen and for which guidelines already exist?

    This section of clause 14(4)(9) is discriminatory. The wording implies that deaf people are less valuable than “hearing” people, and likewise for their embryos. This contradicts attempts by the UK government to recognise the equal status of deaf people in policy (through recognising British sign language) and in law (through equal rights for deaf people). Deaf people wish to have equal rights when making decisions about reproduction, even when genetic technology is involved. We are therefore arguing for this section of the clause to be amended or omitted from the UK Human Fertilisation and Embryology Bill.

    Footnotes

    • Competing interests: None declared.

    References

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