21 January 2008
PhD student working on a thesis on enhancement and disability, at the Centre for Ethics in Medicine at the University of Bristol.Appeared in BioNews 441
'Designer' reproduction is considered undesirable because it is thought to affect parental acceptance of their children and because it is feared it will lead to significant population effects, in particular a reduction of phenotype variety. (A less often heard fear in liberal societies is that designer reproduction will lead to increasing variety in society and a divergence of phenotypes. Divergence may be the lesser evil). Convergence could occur because everyone uses the technology to try to make their children as close to a standard, ideal or 'norm' as possible. Even if this result were not planned or directed by the State the technology could still be 'eugenic' in its effects if enough parents used it to pursue a shared norm (Mittra 2007). Similarly, the legislation could be eugenic if it encouraged parents and clinicians to conform to standards, norms or ideals.
The proposed Bill does just this. Clause 14 makes it illegal for embryos which have a known 'abnormality' to be preferred for implantation to those which are not known to have an 'abnormality'. Clause 14 Section (9) reads: 'Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop -
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality'.
Abnormality is not defined but is described in terms of disability, illness or 'other serious medical condition'. Such a definition works by measuring deviance from an ideal, standard or norm. 'Characteristic' would be a better term to use as 'ab-normality' suggests that there is a norm which is being deviated from.
For example, some characteristics are viewed as a disability by the State and wider society, but not by the people who have them. Deaf sign language users do not view their deafness as a disability. Instead they often see it as a linguistic difference putting them into a separate cultural group, much like the Welsh, or Scottish speakers of Gaelic. Further they see their development and exploration of alternative linguistic media as socially useful and an expansion of human potential. Yet in the explanatory notes to the draft Bill deafness is specifically mentioned as exactly the sort of disability, illness or medical condition which would preclude the implantation of an embryo.
Such restriction of the type of people who can be produced is always (necessarily) eugenic without clearly preventing harm to the child or parents. A better way of preventing use of the technology to harm individual children or parents would be to restrict the purposes for which parents or clinicians can create a child. Creating children purely for research or for masochistic reasons is probably less compatible with a good life for the child that creating a child who is of an unusual type but will belong to a family, and in the case of deaf parents, a community, who share and value that type and can provide for their needs.
Further, preventing deaf parents from using the technology in the way they feel best while allowing non-deaf poeple to do so discriminates against deaf people. In its current form the Bill is vulnerable to accusations of eugenic and discriminatory intent. If it is to remain in this form then much better ethical justification of its position will be required.