Response of the British Infertility Counselling Association (BICA) to the MRC Draft Code of Practice for the Use of Human Stem Cell Lines. The British Infertility Counselling Association (BICA) is the only professional association for infertility counselling in the UK. It is a registered charity with its own constitution and guidelines. Membership is drawn from a variety of professions including counsellors, psychologists, social workers and those involved in related research and education. BICA is committed to improving the education and training of infertility counsellors and aims to promote the highest standards of counselling provision for people affected by fertility issues. This includes those people undergoing licensed treatments as well as those for whom treatment may not be possible or available; it includes those people who have fertility concerns, who are newly diagnosed with fertility problems and those who are undergoing unlicensed treatments; it includes those who have come to the end of their treatments whether successfully or not, those who choose not to pursue any form of treatment, donors of gametes and embryos and anyone else who may be affected by infertility, treatments and donations including existing children, children who may be conceived, partners, future partners, families and wider social networks.

General comments:

Counselling is an integral and statutory part of the professional services offered by HFEA licensed centres (HFEA Code of Practice 6th ed). The provision of counselling acknowledges the emotional pain that accompanies involuntary childlessness and the complexities of family formation using assisted reproductive technologies. These technologies have advanced rapidly over the last decade or so; the choices they present and the dilemmas they create have made the experience of infertility investigations and treatments increasingly stressful for couples and individuals seeking help. BICA considers it vital that people are provided with the space, support and professional counselling help they need to fully explore the implications of any course of action before making decisions that may impact on them, their families and any existing and future children they may have, for a lifetime. It is important that counselling remains a confidential service whatever the health setting and that it is distinct from the information and advice usually provided by other health professionals involved in a couple’s or individual’s care and treatment. This would seem to be particularly relevant to any decisions a donor couple or individual may be making in relation to embryonic stem cell or human stem cell line banking.

Any proposed Code of Practice for embryonic stem cell and human stem cell line banking needs to build in a professional counselling component to ensure that all donors, recipients and their families have access to professional counselling at every stage of the decision making, screening, storage and treatment process. It is particularly important that adequate implications counselling is provided from the outset and that counselling is also built in to the professional support available in the longer term, particularly where there is adverse health data.

Annex 4: Code of Practice for the Use of Human Stem Cell Lines

Deriving and banking embryonic stem cells: schema for addressing donor consent, medical history, confidentiality and feedback

In Annex 4, BICA would propose including a recommendation for professional counselling at phase 1 (IVF Clinic) where the feedback decision making process for donors in relation to embryonic stem cell banking takes place. Please also note that any comments BICA make in this response, apply equally to both the Code of Practice for the use of human stem cell lines and the Code of Practice for the UK Stem Cell Bank.

We commend the inclusion of professional counselling services following adverse health data but would suggest that the following issues be also considered:

Where these services will be provided ie GP practice, IVF clinic, clinical genetics department, other? The original setting in which the informed consent was given may not be appropriate at a later stage: for example, in relation to requests from donors’ or recipients’ adult children or in relation to donors who have not been successful in their own treatments who may not wish to return to a setting with negative associations.
Who is qualified to provide these services ie GP practice counsellors, IVF clinic/licensed centre counsellors, clinical genetic counsellors?
additional training needs for these counsellors, dependent on their primary professional base as above
How these services will be funded?
Clinical verification requests following adverse health data – counselling needs and consent issues – what are the donors’ rights? They may at this stage wish to refuse further testing. Counselling should be offered prior to any consent for further testing and following any clinical verification.
The counselling needs of children of donors/recipients where there has been adverse health data reported, including the needs of any partners and children they may have of their own.
Feedback on genetic familial data –offspring’s rights to testing and counselling where there is no parental consent (this may have been previously addressed but there does not appear to be any guidance for GPs dealing with such requests)

Glossary of terms

Counselling : provision of advice that informs decision making or a course of action

Counselling is not about giving advice and there should be a clear distinction between the advice and information given by other professionals in relation to decision making and the facilitation of decision making that professional counseling offers the individual client(s). Professional counselling can also help people in adjusting to life events such as bereavement, illness and loss – counseling focuses on the immediate problems people are facing and helps them find their own way of coping with these problems.

BICA would welcome an opportunity to discuss these issues in greater detail with the committee and regret the delay in responding to the online consultation. We hope that our comments can be discussed at the committee meeting in July and incorporated into the final version of both the Code of Practice for the Use of Human Stem Cell Lines and the Code of Practice for the UK Stem Cell Bank.