Choosing deafness with preimplantation genetic diagnosis: should it be permitted?

While screening and choosing for a ‘disability’ remained a theoretical possibility only a decade ago, it has now become reality. In 2006, Susannah Baruch and colleagues at John Hopkins University published a survey of 190 American preimplantation genetic diagnosis (PGD) clinics, and found that 3% reported having the intentional use of PGD “to select an embryo for the presence of a disability” (deafness or dwarfism).

Photo by William Duke for the NYTImes

Photo by William Duke for the NYTImes

In this paper I analyse the real case of genetically deaf parents seeking in vitro fertilization and PGD in the US to choose ‘children like themselves’, i.e. to choose to implant an embryo carrying the mutation for genetic based deafness.

The debate on using PGD to choose what kind of children to bring into the world has been monopolized by the discussion of the different notions of ‘disability’ and by the related topic of the treatment/enhancement distinction. Framed this way, different definitions of disability seem to imply different normative judgments about parental reproductive choices. I here adopt a different perspective, as I shift the debate from the level of ‘disability’ to that of ‘impairment’, and argue that choosing deafness withPGD is morally wrong, without claiming that deafness is a disability. I frame the issue in terms of justice toward the future children and limitation of a reasonably broad array of different life plans. I also support my view in terms of the balance between self-determination of parents within their sphere of reproductive freedom and their determination of future children.

Camporesi S. (2010): ‘Choosing deafness with pre-implantation genetic diagnosis: an ethical way to carry on a cultural bloodline?’ Cambridge Quarterly of Healthcare Ethics 19(1): 86-96.

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