APPENDIX 32
Memorandum from the British Infertility
Counselling Association
INTRODUCTION
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.
As a counselling association, BICA's position
in relation to changes in legislation and new developments in
human reproductive technologies is one essentially of neutrality,
in keeping with the values of counselling ie the non-judgmental
acceptance of and respect for all individuals. In previous responses
to Government consultations, BICA has stressed the equal concern
held by its members for the interests and needs of all those affected
by reproductive technologies.
BICA's primary concerns are therefore in relation
to the provision of counselling as currently legislated and interpreted
but we are also commenting on more general issues of equality
and non-discrimination.
PRIORITY ISSUES
— Mandatory implications counselling
for all donor-assisted conception procedures.
— Mandatory implications counselling
for recipients of all regulated ART procedures.
— Clear separation of the assessment
requirements for "Welfare of the Child" from the provision
of professional counselling services.
BICA'S COMMENTS
1. Finding the correct balance between legislation,
regulation and reproductive freedom involves complex issues for
legislators, regulators, professionals offering assisted conception
services and those using these services or other means of non-regulated
reproduction. The implications for all of those affected have
become increasingly wide ranging with the advances in technology
since the Warnock report in 1988 and the HFE Act 1990. The recommendation
for the provision of counselling in this area by the former and
statutory recognition by the latter were both welcome and progressive
for the times. However, given the now increased complexity of
the issues involved, especially in the light of the recently proposed
removal of donor anonymity from April 2005, BICA considers that
implications counselling for all donor-assisted conception should
be mandatory and that consideration should also be given to mandatory
implications counselling for all prospective recipients of ART
procedures. This would be in line with developing standards and
legislation internationally (some states in Australia, eg Victoria,
and that currently being passed in Canada—Assisted Human
Reproduction Act, para 14(2) (b)).
2. Future legislation should include the
requirement that all counselling is provided only by professionally
qualified counsellors. Currently this is guidance only and BICA
does not consider this to be sufficient in relation to the provision
of a recognised professional service, due to be regulated by the
Health Professions Council by 2008. Additionally we recommend
that any future legislation clearly supports BICA as the only
professional infertility counselling association by requiring
all counsellors providing services in licensed clinics to be members
and by requiring all such counsellors to comply with BICA's proposed
accreditation programme (proposed level one demonstrating a basic
competence in infertility counselling and existing level 2, University
rated post graduate level Infertility Counselling Award).
3. BICA provides support to people affected
by fertility issues via its telephone information line and website.
People often are not aware of their rights and entitlements under
the law even when undergoing treatment. Ensuring counselling is
provided to everyone undergoing licensed treatments will help
to ensure that more people are aware of these issues.
4. Clearer definition is required of what
is meant by "welfare of the child" together with the
assessment procedures. Welfare is suggestive of a degree of harm
or risk being present whereas "interests and needs"
more appropriately reflects a centre's ethical and social responsibilities
in relation to the care which should be offered to all parties
and the degree of consideration which should be afforded to a
child as yet not conceived. The standardisation of assessment
of those seeking treatment and the associated ethical issues which
may present should be addressed. Current practices vary from centre
to centre. Broader discussion of ethical dilemmas together with
clear pathways to, and financial resourcing of, any external assessments
which may be required would be of great benefit to all. Clearer
definition of the place of counselling in supporting those undergoing
any form of assessment would be beneficial.
5. With the introduction of new legislation
and any further guidance by the regulatory authority on the delivery
of counselling services in licensed treatment centres, BICA considers
it essential that an appropriate level of counselling staffing
be available at every centre and that these levels should be determined
by the size of the centre. They should be adequate to meet overall
quality standards in licensed centres and future accreditation
requirements under the EU Tissue Directive 2006.
6. Legislation, regulation and guidance
should cover both the short and longer term needs of the individuals
seeking treatment, the donors of gametes and embryos and their
families, and of the families being created through reproductive
technologies and should be brought in line with those for the
statutory adoption and post adoption services. BICA's recommendations
for a framework of counselling and support for these individuals
and families in relation to the opening of the HFEA Register in
2008 can be found in the report "Opening the Record"
2003. We would recommend appropriate legislation and funding to
ensure this guidance can be followed together with whatever expansion
of counselling and support services is required to meet new regulations
and the potential expansion of regulatory authority and technological
developments.
7. In relation to the provision of non-identifyng
information about donors which may be gathered, we would recommend
a standardisation of information comparable to that listed in
the BICA response to the Department of Health consultation on
donor anonymity (2002).
8. The donor's needs for information about
the outcome(s) of her/his donation in terms of pregnancy and live
births is significant in relation to whether or not she/he should
consider and prepare for the possibility of future contact. The
removal of donor anonymity has longer term implications for not
only the donor if there has been a child(ren) conceived from her/his
donation but may also have significance for the donor's partner
(if there is one), any children she/he may have and the wider
family and social network. The importance of access to such information
should be formally recognised in any future legislation.
9. With the introduction of new regulations
allowing identification of donors, consideration should be given
to the processes involved in provision of such information and
best practices. Currently people conceived via donor-assisted
conceptions may not access any information via the HFEA Register
until they reach the age of 18. They and their parents may benefit
from accessing non- identifying information at an earlier stage
and may also benefit from a more flexible approach to the release
of identifying information about their donor with the appropriate
counselling support and mediation services. Such an approach would
seem to be consistent with the increasing openness in society
in relation to infertility issues and the acceptance of diverse
family structures and relationships.
10. In relation to changes in societal attitudes
since the HFE Act was passed, consideration should be given to
the access to register information afforded someone at the age
of 16 if they intend to marry. It is more likely that couples
will choose to live together either for a period before marriage
or permanently and this should be reflected in the legislation.
The current wording is also inconsistent with the HFEA Code of
Practice 6th edition which refers throughout to "partner(s)".
11. Access to the HFEA Register should be
open to any person seeking to uncover genetic relationships they
may have as a result of donor-assisted conception rather than
just to anyone directly conceived via assisted conception treatments
ie to include the descendents of both donor-conceived people and
of donors.
12. The implications for all parties involved
in surrogacy arrangements and for any child affected/conceived
are far-reaching and we consider that counselling should be mandatory
in these arrangements. At present only host surrogacy arrangements
are regulated and may offer counselling. We consider all surrogacy
arrangements whether host or straight should be regulated to ensure
the safety and welfare of all (see Brazier Committee recommendations
1998)
13. Likewise we consider that any future
revision of the HFE Act should have a wider remit in relation
to regulation and incorporate such assisted conception procedures
as IUI, GIFT, hormone treatment, sperm sorting (sex selection)
and fresh sperm donation whether provided in licensed centres
or elsewhere. Counselling prior to any of these services would
therefore be clearly in place to safeguard the needs and interests
of all involved (mandatory implications counselling recommended
for all regulated treatments—Point 1).
14. We consider the comparison of the safety
and welfare provisions of the HFE Act 1990 with other areas of
medical practice to be too narrow. Other areas of medical practice
are not about the creation of new life. This area is unique in
considering the safety and welfare of not only existing people
but also that of people who have had no choice in the manner of
their conception. Standards have to be at least equivalent to
other areas of medical practice and need indeed to go beyond these
in their scope in order to compare with those in areas such as
child welfare and adoption.
15. Future clauses in the Act which may
relate to the newer technologies such as cloning, stem cell therapy,
cell nuclear transfer, transplants of ovarian and testicular tissue,
embryo splitting, selection of genetic characteristics (including
sex selection) and posthumous use of sperm should be underpinned
by clear regulation and guidance in relation to implications counselling.
The necessity of providing professional counselling, independent
of the scientific and medical procedures, allowing space and time
for individuals to reflect upon and understand the consequences
of any proposed treatment or procedure, should be recognised in
any future legislation.
16. Future legislation and regulation should
give more consideration to cross cultural differences and devolution
proofing. Guidance and information should be inclusive of other
languages with regular usage in the UK.
17. The emotional impact of the problems
that people experience through the use of human reproductive technologies
is mitigated by the work of charities such as BICA (366 personal
referrals to BICA registered counsellors from April 2003-March
2004 plus referrals of many others to agencies such as Infertility
Network UK). The role of charities and volunteers in easing the
introduction of the new legislation (particularly with regard
to its impact on those affected by fertility issues and how counselling
may support them) should not be assumed and factored out when
the financial impact of the introduction is considered.
June 2004
| 
