Response to Human Fertilisation and Embryology Authority Consultation on 8th Code of Practice and Revised Consent Forms

18 February 2009

This policy document is a response submitted by the Progress Educational Trust (PET) to the Human Fertilisation and Embryology Authority's Consultation on its 8th Code of Practice and Revised Consent Forms.

Those who responded to the consultation were asked the questions listed below. Questions in bold can be clicked on to take you to PET's response. Where questions are not in bold, PET declined to express a view.

1. Will the new structure of the Code of Practice make it easier to distinguish legal requirements from best practice guidance?

2. Will it be easier for you to find the information you're looking for now that the Code of Practice has been organised into subject based guidance notes?

3. Do the Regulatory Principles in the Code of Practice help you understand what the HFEA expects of licensed centres?

4. Do the Regulatory Principles in the Code of Practice cover all the behaviours and outcomes that a good licensed centre should demonstrate?

5. Do you think that new guidance on costed treatment plans in the Code of Practice will help clinics make costs more transparent for patients, while acknowledging that medical treatments are not entirely predictable?

6. Do you agree that the HFEA should presume that all fertility patients are 'supportive parents' unless there is reasonable cause for concern about significant risk to the child born following fertility treatment, or any other child?

7. Do you think the assumption that it is in a child's best interest to store gametes for later use is reasonable?

8. Will new guidance in the Code of Practice help clinics deal with disputes that arise when one partner withdraws their consent to the use or storage of gametes or embryos in treatment?

9. Is the decision not to completely rule out the use of affected donors reasonable?

10. Is the decision to not completely rule out the use of affected embryos appropriate?

11. In light of the current debate and literature about preimplantation genetic screening (PGS), do you think new guidance in the Code of Practice strikes the right balance between clinical freedom and uncertainties about whether PGS leads to better overall pregnancy rates?

12. a) What information do you think those who are choosing a donor should be allowed to access about the prospective donor, as long as this has been made clear to the donor beforehand?

    b) What information do you think should be made available to parents of donor conceived individuals about the donor?

13. Please add any general comments about the guidance in the Code of Practice

14. Given the legally complex issue of consent and the various scenarios that can arise, are the new consent forms easy to understand and use?

15. Do you think that the form reflects the right balance between information sharing for better patient care and the patient's right to privacy?

16. Please add any general comments about the revised consent forms

17. Do you think the proposed changes (the new HFEA guidance or revised consent forms) would have a disproportionate effect on any groups of people on the basis of their age, disability, ethnicity or race, religion, gender or sexual orientation?

18. Do you broadly agree with the potential benefits of changes to the structure of the Code?

19. Do you broadly agree with the potential benefits and costs associated with the new HFEA guidance?

20. Do you broadly agree with the potential benefits and costs associated with the new consent forms?