APPENDIX 50
Memorandum from Teenage Cancer Trust
Further to your e-mail of 28 May 2004 and your
subsequent discussions with Lucy Shure at this office, I am submitting
comments for the Science and Technology Committee to consider.
I gather from Lucy that you wish to consider
this before we make any approach to young people regarding personal
presentations. However, should you feel that this will be helpful,
then we are confident that we can find one or more individuals
who would be able and willing to meet with you. I have provided
you with a response to the specific issues that relate to your
"online scenarios" and some general information concerning
teenagers with cancer and this field of development.
SPECIFIC ISSUES
RELATING TO
SCIENCE AND
TECHNOLOGY COMMITTEE
SCENARIOS
Screening and Therapy
This has no particular relevance to teenagers
with cancer.
Surrogacy and Donation
Young people and particularly those under 16s
that are "Gillick Competent" require experienced counselling
about possible effects of cancer treatment on their fertility
and the options available if they become infertile. Surrogacy
and donation are clear options and it is in their interests for
these to be legally approved in the future. Similarly the production
of sperm and egg stem cells gives them real opportunities of hope
for the future. However, it is essential that both the medical
and ethical issues are explained to them properly, in a language
that they can understand, in order that they can fully appreciate
what choice they may have now and in the future.
Consent and Confidentiality
The committee should also consider the position
of young people who are terminally ill and may not be physically
able to give samples. As above, the issue of those who are under
16 and "Gillick Competent" must be given careful consideration.
This is especially so when there may be disagreement between the
wishes of the patient and the parent. Counselling is essential.
This will be particularly important with regard to the issue of
posthumous use of sperm.
Cloning
Whilst this is still a very controversial issue,
there may be young people that take the view that this would give
them a real opportunity of a future if their fertility failed
them due to cancer treatment in their teenage years. It is not
Teenage Cancer Trust's role to have an opinion on such matters,
but it is our role to alert you to the fact that there may be
some young people who take a positive view about this possible
future development.
New fertility
This is also an area that provides opportunities
and hope for young people in the future. Many of them would support
further research. Again, where appropriate, experienced and effective
counselling would be essential.
GENERAL ISSUES
CONCERNING HUMAN
REPRODUCTION AND
TEENAGERS WITH
CANCER
This cohort of cancer patients needs the law
to protect their rights regarding fertility and the accessibility
of fertility treatment. Currently, procedures and practice within
the NHS are denying teenagers and young adults their Human Rights.
Failure to provide appropriate fertility information, presented
by skilled personnel, in suitable surroundings and in good time
prior to treatment regardless of whether the patient is being
treated in a paediatric or adult setting, is a gross violation
of their rights. The Law must protect them. In particular, the
issues of under 16-year olds that are "Gillick Competent"
must be addressed.
The provision of information and guidance regarding
fertility for young patients whose fertility may well be impaired
as a result of cancer treatment, is problematic. Sperm banking
and other infertility procedures (particularly for girls and young
women) can involve delay of treatment. While teenagers are treated
on children's wards—there is less chance that the teams
will consider and offer fertility advice and/or treatment or even
have the skills to do so.
Treatments that are technically available and
are used in other countries, are not, by law, available to young
people in the UK for whom it may provide their only chance of
becoming a biological parent, eg tissue preservation. Such denial
affects our group of patients particularly. Young people in the
UK should have parity of opportunity with their peers and need
to be seen in the context of their health dilemma.
Recent technological and medical advances as
well as changes in the law have, theoretically at least, opened
up the possibility of becoming parents for the many young people
who will have cancer and cancer treatment. In the area of fertility
they are penalised by their development, by the NHS structure,
by their age and by the law.
Cancer treatment during adolescence and young
adulthood is more than likely to render patients infertile. Young
women face far more complex issues re harvesting and preservation
of eggs than young men. There should be a more robust legal and
procedural approach in the case of young women rendered infertile
during their youth by cancer treatment. The issues facing female
patients are particularly complex. Urgent research is needed.
The UK is far behind US and other countries. We need to be undertaking
more research and clinical trials with this group.
Our experience shows that teenagers undergoing
cancer treatments are not given adequate or sufficient fertility
counselling to make these decisions. This is further complicated
by the legal age of consent and "Gillick Competency"
issues whereby a teenage girl may disagree with her parents and/or
consultant. At a recent conference organised by Teenage Cancer
Trust in May 2004, attended by teenage cancer sufferers and survivors.
We asked participants a number of questions about fertility and
the counselling they received. Answers were particularly enlightening:
— 66% received no fertility counselling
before treatment;
— 71% of those who did receive counselling
did so during or after treatment; and
— 48% of those who received fertility
counselling were not satisfied with the quality of it.
The recent news of viable 21-year old sperm
that led to the birth of a healthy baby was welcomed by Teenage
Cancer Trust. However, it highlighted how far behind we are if
this technology was available 21 years ago and it is still not
being offered to all young male patients through routine counselling.
For male patients, there are some issues around how and where
they are asked to donate sperm. The "Gillick Competent"
under 16-year olds are particularly vulnerable if not properly
supported. The subject of fertility may be broached in an incorrect
manner with male patients. Fertility is often a subject they have
not yet thought about after their diagnosis and to be presented
with the subject in front of their parents, particularly if this
is a younger teenager it can be very embarrassing.
In summary: both the current law regarding preservation
(of tissue) and the current NHS structure of dividing patients
into children or adults, results in denying all teenagers and
young adults with cancer full information and opportunity re preserving
their fertility. Two-thirds of young people undergoing cancer
treatment were not offered information/advice or opportunity to
protect their fertility and were thus denied their Human Rights.
A number of these patients would have been able to take advantage
of available and tested technologies had they lived elsewhere
or could afford to travel elsewhere for treatment. We strongly
recommend that a fertility team should be available to each cancer
centre, trained and equipped specifically to deal with the needs
of teenagers/young adults.
June 2004
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