The use of preimplantation genetic diagnosis in the UK is highly regulated. The regulatory system requires a committee to find that a condition is sufficiently serious to require the treatment. Conditions are licensed on a case by case basis as and when couples request its use.
Before requesting PGD, potential parents should consult their local clinical geneticist or genetic counsellor to evaluate the risk of having a child with the inherited condition. Tests should be performed to determine the genetic defect causing the condition of the affected parent or family member. Couples considering this treatment should ask their genetic specialist to refer them for a PGD consltation. Clinics offering PGD must also ensure that PGD can identify that defect in an embryo biopsy and confirm that a PGD licence has been issued by the Human Fertilisation and Embryology Authority (HFEA) Statutory Approvals Committee (SAC) or is suitable for making an application for that particular condition before proceeding further.
Before you can access PGD, the HFEA must have licensed the condition for PGD (full list of licences here). If the particular condition does not yet have a licence this does not mean that you will not be able to access PGD. Conditions are licensed on a condition-by-condition basis, as people apply to use PGD for specific conditions. If your condition is not yet licensed, your PGD clinic will be able to apply for a licence through the HFEA.
Preparation for PGD consists of several stages. These typically include:
Preparation time will vary, but on average it will take 5-12 months after the initial consultation before a couple will start treatment. Once in a treatment cycle, the process takes about 9-12 weeks.
The cost of PGD is typically split into two parts: procedural costs (consultations, laboratory testing, egg collection, embryo transfer, ultrasound scans, and blood tests) and drug costs (for ovarian stimulation and embryo transfer).
A couple can receive PGD treatment on the NHS if they meet certain criteria. These include:
Couples meeting the full criteria may be eligible for up to three complete cycles of PGD. The number of cycles that a couple will be able to access can depend on whether they are successful after a cycle and also whether further treatment after a cycle is medically recommended.
A couple can receive PGD on the NHS in Scotland if they meet certain criteria. These include:
Couples meeting the full criteria may be entitled to up to two cycles of PGD.
A couple can receive PGD on the NHS in Wales if they meet certain criteria. These include:
Couples meeting the full criteria may be eligible for up to three cycles of PGD.
If funding is not available (if a couple is not eligible for NHS Funding), then a couple may be able to pay for a treatment cycle themselves. The price of this will vary between clinics.