How can I access preimplantation genetic diagnosis?

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. 

Licensing of PGD

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.

What if my condition does not have a licence for PGD?

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.

Steps to take before treatment

Preparation for PGD consists of several stages. These typically include:

  • Referral to a PGD clinic by the couple’s clinical geneticist or genetic counsellor.
  • An initial clinical consultation.
  • Checking if NHS funding applies or if an application is required for procedural and drug costs.
  • Obtaining the potential parents’ consent for treatment, biopsy, storage and use of gametes and embryos.
  • Laboratory testing and preparatory investigations (including health history, ultrasound scan, blood tests, semen analysis).
  • Treatment cycle.

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.

Can I access preimplantation genetic diagnosis through the National Health Service?

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).

Funding for PGD: England only

A couple can receive PGD treatment through the NHS if they meet certain criteria. These include:

  • The couple should be at risk of having a child with a serious genetic condition.
  • There should be no living unaffected child from the current relationship.
  • The female partner should be under 40 years of age at the time of treatment.
  • The female partner should have a Body Mass Index of more than 19 and less than 30.
  • Both prospective parents must be non-smokers.

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.

Funding for PGD: Scotland

A couple can receive PGD through the NHS in Scotland if they meet certain criteria. The couple must have: 

  • A known genetic condition in the family which conveys a ‘significant risk of a serious genetic condition’. 
  • No living, unaffected child, or untested child (for an adult-onset disorder) as a couple 
  • Female hormone level (anti mullerian hormone) of 7.5 pmol/l or greater (or an adequate ovarian scan). 
  • Female age < 39 years. 
  • Female body mass index < 30. 
  • Both partners should be non-smokers for at least 3 months, living at the same address for at least 2 years and both must be eligible for NHS treatment. 
  • PGD cannot be offered to patients with a ‘de novo’ dominant mutation.

Individuals with an unaffected child are not entitled to a second, NHS-funded cycle. Eligibility for self funded PGD can be considered by the PGD multi-disciplinary team.

Further information can be found on the NHS Lothian website here

Funding for PGD: Wales

A couple can receive PGD through the NHS in Wales if they meet certain criteria. These include:

  • Referral must take place before the female is 38 and 6 months old.
  • Cycle of treatment must take place before the females 40th birthday.
  • Female Body Mass Index must be between 19 and 30 (women who do not have a BMI between 19 and 30 may be placed on the waiting list, but must have reached the required BMI before treatment takes place).
  • Both prospective parents must be non-smokers.

Couples meeting the full criteria may be eligible for up to three cycles of PGD.

What if I am not eligible for funding through the NHS?

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.