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.
The first British baby genetically-selected to be free of a breast cancer gene has been born. She grew from an embryo screened to ensure it did not contain the faulty BRCA 1 gene, which passes the risk of breast cancer down generations.
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.
FERTILITY regulators have triggered a new row over designer babies by allowing doctors to destroy embryos affected by more than 100 genetic conditions, including many illnesses that are not life-threatening. The genetic “defects” that can now be routinely screened out include conditions carried by a number of leading figures, such as Pete Sampras, the tennis champion, and Sergei Rachmaninoff, the Russian concert pianist and composer. In some cases it will mean the elimination of an embryo that has been identified as carrying genetic material inherited from a stricken grandparent, but which may not necessarily develop the same illness. The Human Fertilisation and Embryology Authority (HFEA), has published a list of 116 inherited conditions that fertility clinics can screen out without requiring special permission.
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.
BERLIN — Embryos created during in vitro fertilization can be screened for genetic defects before being implanted in the womb, a German high court said in a landmark ruling Tuesday. The Federal Supreme Court in Leipzig ruled in support of a Berlin gynecologist who had carried out screening on embryos for three different couples and implanted only those that were healthy. The embryos with hereditary genetic defects were left to die off. The high court's ruling upheld a decision by a Berlin state court that the doctor's action did not violate German laws for the protection of embryos. The 47-year-old doctor, who was not identified by the court, brought the case to court himself in 2006 to clarify the legal situation. He was first acquitted by a regional court in Berlin, but the city's state prosecutor appealed.
A decision last week by Germany’s Federal Supreme Court to acquit a gynaecologist of illegal abortion after he chose to carry out genetic diagnosis on several human embryos and discarded those with genetic defects has stirred a debate about the possible need for a new law tightening the rules on preimplantation genetic diagnosis. The landmark ruling said that embryos created from in vitro fertilisation (IVF) can be screened for genetic defects before being implanted in the womb. The 47 year old doctor, who was not identified, brought the case to court himself in 2006 to clarify the legal situation. He had already been acquitted in May 2009 by a regional court in Berlin, but the prosecutor had appealed the decision.
The German chancellor, Angela Merkel, announced her objection to preimplantation genetic diagnosis at a recent party conference. However, she has agreed to a free parliamentary vote on whether to allow pre-screening of fertilised embryos in Germany. Meanwhile her coalition partner has replied that his party would not tolerate a complete ban. Christian Lindner, general secretary of the liberal Free Democratic Party, expressed his “regret that this chancellor, as a scientist, hasn’t given greater recognition to the method.” Officially Germany, in contrast to other European countries, has forbidden preimplantation genetic diagnosis since 1990, under the Embryo Protection Law, but some legal uncertainty remained. In July 2010 the Federal Supreme Court in Leipzig had ruled in support of a Berlin gynaecologist who had carried out screening on embryos for three different couples and implanted only those that were healthy.
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 ...