The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. People possibly affected with the Huntington gene do not always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test.
Newspaper stories claiming that fertility regulators in the UK have allowed embryos to be destroyed for 'minor disorders' are unrelated to decisions taken at a recent regulatory meeting. Stories last week said the Human Fertilisation and Embryology Authority (HFEA) had allowed doctors to routinely screen out more than 100 genetic disorders using PGD (preimplantation genetic diagnosis). But, according to HFEA sources, the list of genetic disorders approved for PGD has been on the website for at least three years.
Under English law a child born disabled, for instance by Tay Sachs disease, as a result of negligent embryo selection by preimplantation genetic diagnosis (‘PGD’), can sue the relevant health professionals by means of a 1990 amendment to the Congenital Disabilities (Civil Liability) (‘CD’) Act 1976. By contrast, a second child conceived outside the in vitro fertilisation (‘IVF’) clinic, whose Tay Sachs is not detected in utero by means of prenatal diagnosis, can have no claim against the relevant health professionals due to the decision in McKay and Another v Essex Area Health Authority, which held that a child can have no claim for so-called “wrongful life”. This paper argues that this difference is anomalous and inequitable. It highlights the inadvertent way in which the legislative exception was crafted and shows that there are no relevant differences between the selection practices of PGD and PND that would in any event justify such different treatment. It critiques the English ...