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  Designer Myths: the science, law and ethics of preimplantation genetic diagnosis (PGD)

By Kay Chung, 1999. Progress Educational Trust (Briefings in Bioethics: Vol 1) 5.00

Review by Muria Mirza

Since the mid-1990s, sensationalist headlines have succeeded in tarnishing the public perception of prenatal genetic testing and subsequent forms such as preimplantation genetic diagnosis (PGD). This particular type of reproductive treatment combines IVF technology and genetic testing in order to screen embryos for serious single-gene disorders such as Huntingdon's
and sickle cell disease. Unfortunately, the confusion about what is scientifically and legally possible has made it possible for a range of protest groups and disability activists to colonise this issue at an ethical level, voicing concerns about the possibility of a 'Brave New World' scenario of 'designer babies'.

It is for bringing much needed clarity to this debate that Kay Chung's pamphlet, Designer Myths, is so important and insightful. Chung sets out to clear up the misconceptions of what PGD is used for and who is likely to use it. With clear illustration, Chung points out that PGD is not an enjoyable consumer experience but rather an expensive, time-consuming, and often emotionally difficult procedure that is used in rare circumstances when mothers are at high risk of carrying an affected child.

Chung also exposes the problems of using objective criteria to determine when it is acceptable to act upon PGD results. On a practical level, it is difficult to identify at the PGD stage the degree of severity of a disease. Furthermore, a family's opinion of the severity of a disease can be influenced as much by their own personal experience of it as much as by the hard medical facts. Indirectly criticising the route which abortion regulation took with the 1967 Act (which makes primary medical judgement about whether a particular disability is sufficiently substantial to warrant referral for abortion, rather than prioritising the woman's choice), Chung's argument explains that objective rules about what parents should tolerate about their unborn child can only ever be an untenable framework. The decision about whether or not to proceed with a pregnancy should be left to the potential parents.

Quite rightly, Chung argues against the politicisation of the reproductive decision. She asserts that a couple's decision to not have a disabled child does not reflect any overall prejudice against disabled people in society, just as a woman's decision to have an abortion is not statement against the value of children in society. The depiction of reproductive choice as a purely subjective and personal one is precisely how PGD can be represented to the public as a defence of our freedom, rather than a form of eugenics. People should be trusted to choose what kind of family they want, and not be regulated by a state burdened with wider social anxieties. However, as the media hype shows, it is precisely that expansion of individual choice that is problematised in the current moment.

Munira Mirza (advisor to Pro-Choice Forum)

Designer Myths: the science, law and ethics of preimplantation genetic diagnosis is available from:

Progress Educational Trust,
140 Grays Inn Road,
London,
WC1X 8AX.
Tel: 020 7278 7870.
Email: admin@progress.org.uk.

It can also be ordered via the Progress website www.progress.org.uk

 
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