HFEA Code of Practice: Have your say, before it's too late

The Human Fertilisation and Embryology Authority (HFEA) consultations on the draft 8th Code of Practice, revised consent forms, on presenting clinic performance and outcome data both close at midnight on Wednesday 18th February.

At the HFEA public consultation meeting held in London on 11th February Alan Doran Interim Chief Executive at the HFEA conceded that the draft 8th Code of Practice would not be causing JK Rowling to lose any sleep as it is not what you would call a riveting read. But those of you who work in the sector, are patients or have a mere scintilla of interest in this field should make the time to look at the changes HFEA is considering implementing and respond.

The Human Fertilisation and Embryology Act 2008 is the biggest shake up of the law governing assisted reproduction and embryology for almost two decades and the changes made in the legislation have to be reflected in the Code of Practice. So changes that are made in this draft Code are not cosmetic but may have serious implications for your practice or access to treatment.

There is an online questionnaire which solicits your opinion on matters ranging from costed treatment plans to PGS (. One area which does not feature specifically in the questionnaire but on which there was a single HFEA consultative meeting in London is PGD (preimplantation genetic diagnosis).

The proposal is to remove the current guidance on PGD .

G.12.3.2 'The seriousness of the condition should be a matter for discussion between the people and the clinical team,' and downgrade this to:

10.3 'The perception of the level of risk by those seeking treatment will be an important factor in the decision making process.'

The overall proposal to transfer the decision as to whether or not a condition is serious to the HFEA begs the question: who is better placed to decide a patient's treatment, the clinical team or the HFEA? As one delegate quipped at the consultative meeting on this issue, 'Perhaps we should cut out the middle man and send our patients directly to the HFEA so they can treat them as well!'

Under the current guidance in G12.3.3 of what factors should be taken into consideration when deciding the appropriateness of PGD the first one (a) states:

'The view of the people seeking treatment of the condition to be avoided.'

The HFEA intend to substitute the word 'view' with 'experience'. What 'experience' would the couple have to demonstrate: multiple miscarriages, terminations, or perhaps prove they had completed a workshop in the relevant condition? The use of experience in this context places an additional burden upon couples. How will it be measured?

Both Alan Doran and Lisa Jardine (Chair of the HFEA) have been keen to emphasise that the HFEA is in 'listening mode' and it is therefore incumbent upon us to talk to them. Let them know your 'views' or 'experiences' before midnight this Wednesday.