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)
A free-to-attend evening event in London, produced by the Progress Educational Trust (PET), about the latest scientific, regulatory and ethical developments in the testing and screening of human embryos. The event is supported by Illumina, and will be chaired by Dr Sue Avery (Director of the Birmingham Women's Fertility Centre).
Speakers include Dr Tony Gordon (Managing Director and Lab Director at Genesis Genetics), Dr Christine Patch (Clinical Lead in Genetic Counselling at Genomics England), James Lawford Davies (Partner at Hempsons) and Professor Michael Parker (Director of the University of Oxford's Ethox Centre).
Attendance is free, but advance booking is required - please email Sandy Starr at firstname.lastname@example.org to book places. If tweeting about this event, please use the hashtag #PET123. If you use Facebook, you can join the Facebook page for the event here.
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?
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.
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?
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?
A panel of experts with different perspectives will debate these questions. In the PET tradition, much of the event's running time will be devoted to letting the audience put questions and comments to the speakers.