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The Progress Educational Trust (PET), informing debate on assisted conception and genetics

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EVENTS

Testing, Testing 1, 2, 3: PGS and PGD

Progress Educational Trust
Institute of Child Health, University College London, 30 Guilford Street, London WC1N 1EH
13 September 2016 6pm (registration), 6.30pm-8.30pm (discussion)
This public event was organised by the Progress Educational Trust (PET) and was supported by Illumina.
The possibilities for testing and screening human embryos have increased substantially in recent years. The science can be challenging to understand while law, regulation and ethical debate can struggle to keep pace.
Why are embryos usually tested?
To try to improve the chances of establishing a pregnancy.
To offer a reproductive choice to people whose children are at increased risk of genetic disease.
What are the most commonly used approaches?
PGS (preimplantation genetic screening), which involves checking an embryo for aneuploidy (abnormal numbers of chromosomes).
PGD (preimplantation genetic diagnosis), which involves checking an embryo for genetic mutations or chromosomal translocations that are associated with a history of disease in the patient(s) or their family.
PGS and PGD entered clinical use in the 1990s, since when they have both been transformed by rapid advances in genetic technology - particularly advances in DNA amplification (generating many copies of DNA from a small initial sample), DNA arrays (which allow many different sections of DNA to be studied simultaneously) and DNA sequencing (determining the precise sequence within a DNA molecule).
With the advent of technologies including next-generation sequencing (NGS) and a technique known as karyomapping, it is now possible to use PGS and PGD on an embryo at the same time - that is, after performing only one embryo biopsy - and to use PGD to test for more than one condition at a time.
This has implications for the way embryo testing is regulated, under both national law (the Human Fertilisation and Embryology Acts of 1990 and 2008) and international conventions (the European Conventions on Human Rights and Fundamental Freedoms and on Human Rights and Biomedicine).
Earlier this year, the HFEA (Human Fertilisation and Embryology Authority) solicited views on how it should regulate PGS and PGD, in light of the latest scientific advances. Two sections of the HFEA's Code of Practice (the Guidance Notes on PGS and on Embryo Testing and Sex Selection) have since been updated.
This explored questions raised by these developments, including:
To whom should PGS and PGD be offered?
What does law and regulation currently permit? Might this change in future?
How many conditions should be looked for?
What are the implications of the latest embryo testing techniques for the cost of treatment cycles?
The more we know about embryos, the fewer embryos may appear suitable for transfer. How to manage this fact, when patients may not have many embryos to start with?
What sort of consent must be obtained from patients and when? What sort of counselling should be provided, and when? Should counselling be optional or mandatory? Should it be made available to patients' wider families?
What facts are patients permitted to know about an embryo, and what facts are they permitted not to know? If they request not to know certain facts, how can this be dealt with in practice?
NGS and karyomapping create new possibilities for incidental findings - that is, discoveries with implications for the health of a future child that are not related to the reason the embryo was tested. What can lawfully be done with these findings? What should be done with these findings?
New technologies create a greater need for embryo biopsies, embryo freezing and the interpretation of (increasingly complex) test results. Can professional competence and resources keep up? To what extent does responsibility for monitoring this rest with the HFEA?
Who has responsibility for the data from embryo tests? If an embryo is selected for transfer and results in a child, should that child - later in life - be able to access the data?

Speakers:
Dr Tony Gordon
Managing Director (USA) and Lab Director (UK) at Genesis Genetics
Dr Christine Patch
Trustee at the Progress Educational Trust, and Clinical Lead in Genetic Counselling at Genomics England
James Lawford Davies
Adviser to the Progress Educational Trust, and Partner at Hempsons
Michael Parker
Professor of Bioethics, Director of the Ethox Centre and Coordinator of the Global Health Bioethics Network and the Genethics Club at the University of Oxford, and Chair of Genomics England's Ethics Advisory Committee

Chair:
Dr Sue Avery
Trustee at the Progress Educational Trust, and Director of the Birmingham Women's Fertility Centre

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