Matters of life and birth

The human fertilisation and embryology bill currently before parliament is controversial for many reasons, but readers of Disability Now will be particularly interested in two matters. During the House of Lords’ debate on 12 December, an attempt was made by Baroness Masham to remove from UK abortion law the clause which makes the disability of the potential embryo a justification for termination. Her proposed measure would not have prevented termination of disabled fetuses before 24 weeks (which would still be permitted on grounds of health of the mother or existing children) but would have prevented termination after 24 weeks. At present, termination is not permitted after 24 weeks unless the fetus has a “serious handicap”. Many disability activists and organisations feel strongly that this constitutes unjust discrimination.

Only one per cent of abortions are carried out on grounds of fetal abnormality, and very few of those occur after the 24th week of pregnancy (less than 100 per year).

In cases where the fetus is very grievously impaired, it would seem cruel to force the mother to continue pregnancy knowing that the baby would be born dead, or would die very soon after birth. However, it appears that there have been occasional abuses of the law, for example the post 24 week termination of a fetus affected by cleft lip and palate. Whether changing the law is the best way of avoiding these rare abuses is not clear to me. Clinical guidelines might be a better way of maintaining the flexibility which complex cases often require.

Controversy also surrounds the bill’s recommendations on pre-implantation genetic diagnosis (PGD), which is the technique of diagnosing and selecting embryos during in vitro fertilisation (IVF). Clause 14 of the bill suggests that embryos with a genetic condition causing impairment or illness cannot be preferred to embryos free of abnormality. This is designed to avoid Deaf or disabled couples deliberately choosing a baby who shares their condition. The reasoning is that PGD is a technology aimed at improving human health.
Most non-disabled people would view this as appropriate, and some disabled people would agree. But opponents have claimed that it is eugenic, and Deaf activists have spoken in terms of genocide. Patient autonomy and reproductive freedom would suggest that disabled people have the right to control over their bodies and families. 

Only a few hundred babies are born through PGD every year, so neither the technology, nor this clause, will have more than minimal impact on the number of disabled people being born.