BICA's formal response to HFEA Consultation – Welfare of the Child questionnaire
1. Please give any general comments you might have about the current guidance in the code of practice regarding welfare of the child assessment.
Current guidance is too imprecise and therefore is open to widely differing practices in clinics.
The role of an ethics committee in supporting the decision making process in this context is not addressed and could have a standardised and important role in supporting staff in making hard decisions about whether to treat or not.
Insufficient attention is paid to the significant differences which arise in the approach to those seeking treatment with donor gametes, gamete donors and those involved in surrogacy arrangements.
Surrogacy arrangements are almost completely ignored, although the need for guidance and support is at least as important as with donor gamete treatments.
The present code of practice [1.9] does not sufficiently address two issues which bear on the ability of the counselling service to support this process
• the need for all counsellors to be accredited by a counselling body and have received recognised preparation for practice as an infertility counsellor.
• receiving regular, appropriate professional counselling supervision
Whilst the law remains as it is [S13(5)] it should surely be seen as not outwith the spirit of the Act to interpret this within the code as meaning that “neither the woman or the man should be treated without having regard to….”
Under this same section of the Act, (“any other child who may be affected by the birth”) must clearly include acknowledgement of the potential impact on the children of donors, particularly as potential half sibs.
The issue of when to make an assessment is still only addressed in the context of when it should be repeated, not where there might be considerable difference between acceptance by a clinic and onset of treatment because of waiting lists. We would like to see a clear statement of currency when an assessment ceases to be valid and should be repeated: this might be six months or significant change of circumstances after acceptance for treatment.
Whilst the code 7.14 & 7.16 makes it clear that implications of treatment and implications of the use of donated gametes should be addressed separately, this is widely ignored through willfulness, ignorance or the charging of fees for more than one session.
We would wish to acknowledge the sensitivity of cultural and religious differences in approaches to these issues, which receive little attention presently. We have taken the view that such sensitivity may conflict with judgements about the welfare of the children born through assisted conception treatments, which cannot be easily reconciled.
BICA believes that counsellors are normally best placed to take a lead in the assessment process, however they may not be the most appropriate professionals to undertake the actual assessment of individual patients. This may include factors such as: conflict with their counselling role with individual patients; lack of training themselves in assessment of risk or potential for parenting; commitment to confidentiality and a non-directive approach which might inhibit formal assessment. Where an assessment is deemed necessary other criteria should be applied as to suitability to perform this role.
All of our response should be read in the light of our strong support for the decision of this government to remove the anonymity of donors in future treatment of infertile patients. However we are alarmed that, as yet, so little has been done to put in place mechanisms which will ensure the availability of advice, support, guidance and counselling for those seeking information from the register or needing guidance on how this decision affects them sometime after they received treatment.
2. Which of the following options best reflects your view on the enquiries that clinics should be expected to make in order to gather relevant information for the welfare of the child assessment?
d) Information about risk factors provided by the patient, plus follow-up to the GP routinely
There was also strong support for treating infertility patients not using donated gametes as ordinary obstetric patients, to avoid stigmatisation and inequality. It is important to note that there is no evidence of which we are aware that this process actually informs decisions making helpfully at the moment. The emphasis should be on the use of information provided by the patient themselves.
It is essential, however, that uniform, clear guidance for clinics and GPs comes from the HFEA on how to seek this information and why it is being sought, which avoids the sort of common discrepancies currently found between clinics.
The general feeling was that for the generality of patients the information being sought here is of significant medical factors [which would normally be identified in the GP referral anyway] and major risk indicators.
Donor gamete treatments and surrogacy are different, and should be treated so.
3. Do you think that refusal by a patient to give consent for a centre to contact their GP should be taken into account when deciding whether or not to provide treatment?
a) Yes - the reasons for such refusal must be explored fully; they might be matters of confidentiality etc. not bearing on risk; however this must be taken into account carefully.
4. Which of the following options best reflects your view on the factors that should be taken into account during the welfare of the child assessment?
c) Risk factors for medical, physical and psychological harm and social circumstances should be taken into account.
The focus must be on the identification of risk of real harm to potential or actual children. The welfare of the child cannot be regarded as paramount in this context, but the patient’s need for a child must not be the over-riding factor in treatment; a balance has to be struck as the act envisaged.
The relevant sort of social factors would be ones which might lead to risk and harm; they must not lead to the exercise of discriminatory attitudes with regard to sexuality, poverty, disability etc.
5. Would you welcome guidance from the HFEA on how to take into account the factors mentioned above?
a) Yes however it is vital that this guidance results from the advice of acknowledged experts in the field of child welfare, including the procedures and practice in adoption and also in counselling. Whilst not being prescriptive, this guidance should be clear and lead to sound protocols, with as much standardisation as possible steered by the HFEA’s regulation process.
6. Which of the following options best reflects your view on the assessment that should be carried out during donor conception treatment?
b) When patients are having donor conception treatment, the same welfare of the child
assessment as patients using their own gametes should be used. However, donor
conception patients should receive extra information and preparation for becoming the
parent(s) of a donor conceived child.
On balance we feel that a common approach best serves the purpose of equal treatment in the clinic. However we strongly support the increased emphasis on more support and guidance and implications counselling for such patients. The support, advice and guidance should be mandatory, although we would not extend that to counselling, although the best equipped staff member to undertake this preparation with patients might be the counsellor. This would include our emphasis on 7.14 & 7.16 of the code being more uniformly implemented.
This must include patients at the time of treatment and be made more accessible, readily into the future.
The sessions must be included in the cost of treatment [if relevant], otherwise the spirit of legislation and code are being effectively undermined.
7. If you opted for either 6 b) or c), what kind of assessment and/or preparation for donor conception patients is desirable?
Those issues identified at 7.15 of the code are important and others. Expert advice should be sought by the HFEA in compiling guidance on the matters to be considered: BICA would be able to provide such guidance. [1]
The process being seen as preparation rather than assessment; preparation for parenthood, for having a genetically un/partly related child, for facing questions form the child and siblings, for donors talking to their own children about the possibility of unknown half siblings.
The assessment would include seeking information from the patients themselves, the GP and other agencies where information of concern appeared.
Patients should be given contact with relevant organisations and materials to access then and in the future. It is the experience of organisations like DCNetwork that parents often come back some years alter when a child is of an age when ‘telling about origins’ needs to start and the parents feel underprepared to manage this.
Current research suggests that donor conceived people feel strongly that they have a right to expect that donors have been properly assessed, because of the enormous potential for problems if undisclosed problems subsequently arise, whether their impact is direct [genetic disease] or psychological [history of child abuse] it is likely that many donor shave reciprocal expectations; that their gametes will not be recklessly. We acknowledge this is hard to resolve.
[1] BICA [2004] ed. E. Blyth. ‘Implications Counselling for People Considering Donor-Assisted Conception’
8. Which of the following options best reflects your view on the assessment that should be carried out for patients undergoing unlicensed treatments in licensed clinics?
a) When patients are undergoing unlicensed treatments, the same welfare of the child
assessment as those undergoing licensed treatments should be used.
The primary concern here is for equity, and the recognition that in reality patients often move easily and seamlessly between licensed and unlicensed treatments; although it is recognised that this creates apparent inconsistencies with treatments in other O&G settings.
[For some respondents ‘the same’ meant of course ‘none’. You perhaps need to be aware of this potential confusion in interpreting the results of the questionnaire.]
9. Please give any general comments you might have about the welfare of the child principle and its interpretation in clinical practice.
One of the most significant impacts on the welfare of children and families involved in assisted conception treatments is that of multiple births. This has received far less attention that it deserves, and must be addressed in both assessment and guidance & counselling.
Whilst the evidence base for concern about the welfare of children born after donor gamete treatments or surrogacy is still very thin, this should not be taken as reason for not proceeding with caution. The precautionary principle should apply. Lack of evidence that these children are not harmed by failure to disclose their origins, must not be taken as evidence that there is no harm. The lesson of adoption is salutary here: a decision was taken with the benefit of limited evidence arising from non-representative samples of children who felt they had been harmed by concealed adoption, yet the decision to move to openness was never seriously questioned after the Children Act 1975 was passed. The
We would like the HFEA to adopt the role of providing research alerts analogous to those relating to adverse incidents, so that clinics quickly become aware of relevant evidence as it emerges about how these treatments are impacting on the welfare of children.
evidence which continues to emerge is that, whilst only a minority seek to trace their birth parents, it is an important opportunity for very many, and one which on the whole has brought considerably more benefit than harm[1],[2]
Refusing treatment is difficult and stressful for clinic staff, and we would urge the HFEA to encourage training and support for those engaged in this process, to ensure it does least harm. There is some evidence of the harm caused at this stage which might be seen as analogous to an extent to treatment failure. [3]
Welfare of the child procedures must not be influenced by cost; therefore all sessions of advice, guidance or counselling must be free of extra charge.
Jim Monach
7 April 2005
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[1] Howe D, Sawbridge P & Hinings D [1992] Half a Million Women: Mothers who lose their children by adoption
[2] Howe D & Feast J {[2203] Adoption Search & Reunion: The long term experience of adopted adults
[3] Boden J [2005] When Treatment Fails [BFS paper based on uncompleted and unpublished PhD thesis, University of Hull]
