Italy introduced legislation in 2004 governing assisted reproduction. Before then, the legislative vacuum that existed in Italy had de facto rendered all scientific techniques lawful. That vacuum has now been filled by a controversial and retrogressive law, which permits access to assisted reproduction within very narrow confines. Access is limited to stable heterosexual couples of a fertile age who may use only their own, and not donor, gametes. The woman is under an obligation to have all created embryos, healthy or diseased, implanted.
This publication is an illustrative text which has been produced to assist the reader. It shows the Human Fertilisation and Embryology Act 1990 as amended by the Human Fertilisation and Embryology Act 2008.
These explanatory notes relate to the Human Fertilisation and Embryology Act 2008 which received Royal Assent on 13 November 2008. They have been prepared by the Department of Health in order to assist the reader of the Act. They do not form part of the Act and have not been endorsed by Parliament.
This research briefing was prepared in conjunction with a workshop organised by the ESRC Genomics Policy and Research Forum, held on Thursday 8 October at the ESRC Genomics Network Conference 2009, Welsh Assembly, Cardiff. This workshop brought together new research on the Human Fertilisation and Embryology Act 2008 from current PhD students and recent PhD graduates, from the ESRC Genomics Network and beyond.
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.
Pre-implantation genetic diagnosis (PGD) is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. It involves checking the genes of embryos created through IVF for this genetic condition. Before PGD clinics are permitted to test for a condition or combination of conditions, the HFEA must first agree that the condition they want to test for is sufficiently serious. This list of conditions are those that the HFEA has so far agreed that it is acceptable for clinics to use PGD to test for.
The article in the Sunday Times last week ‘Embryos destroyed for minor disorders’ was inaccurate and misleading and could cause confusion and distress for those families undergoing or considering IVF treatment with pre-implantation genetic diagnosis (PGD). PGD is licensed only for serious medical conditions which severely threaten the future health and wellbeing of children. It is not a ‘routine’ procedure. In 2007, out of nearly 37,000 patients who received fertility treatment, 169 had PGD, fewer than one in 200. Embryos are tested when they are just three days old and made up of about eight cells. They are not at the developed stage of the foetus as shown in the photograph.Finally, to suggest that embryos are destroyed for ‘minor conditions’ which would require ‘unpleasant treatment’ is not only misleading, it is disrespectful both to those living with the condition, and those seeking to avoid passing on these serious conditions to their children.
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.