The provision of fertility preservation services through sperm banking to young men under the age of majority facing treatment for cancer and other potentially sterilizing health conditions or treatments is a relatively new service throughout the world. In the UK it is regulated through the Human Fertilisation and Embryology Act 1990 (HFE Act) under the auspices of the Human Fertilisation & Embryology Authority (HFEA). Although the HFE Act was implemented as recently as 1991, such is the pace of change in this field of medical science that few minors were banking at that time and no special provision was made for them either in services or in consent requirements . This has left the unique situation whereby only the young men themselves can consent to semen storage and there can be no substituted consent by proxies, including parents (HFE Act Schedule 3). Where mature gametes are present, the young men therefore must be deemed competent to use fertility preservation services. Decisions have to be made and acted on between diagnosis and commencement of treatment, when young men (some as young as 13) and their parents are in a state of shock.
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Researchers and practitioners have suggested that the impact of a cancer diagnosis during the teenage years brings unique pressures, coming as it does during the demanding emotional and social pressures of moving towards adulthood. The onset of cancer typically heightens the young person’s dependency on their family, thus stalling or even reversing any trend to spend more time away from the family unit and with peers. Research also suggests that teenagers’ primary sources of knowledge about sexuality and fertility are teachers and friends and these too may be affected.
Professionals’ concerns about their knowledge and skills base in providing an ageappropriate fertility preservation service and the associated ethical issues have been noted.
The absence of any systematic collection and analysis of the experiences of those directly involved is a significant drawback to service development.
Background to the study
Given the lack of existing research and the sensitive nature of the subject, it was agreed that a pilot study should be undertaken initially, funded by the UK National Health Service. As part of that study, 22 interviews were held with a range of professionals from paediatric oncology and reproductive medicine, nursing, reproductive science and social work, primarily from two regional paediatric oncology centres and three assisted conception units that had sperm banks in the North of England.
These interviews established the professionals’ understanding of the processes in their local fertility preservation service and identified any concerns about its delivery Viagra professional Australia. This, together with findings from the literature, served the purpose of orienting the researchers to local and national services and issues, and identifying areas on which professionals would welcome feedback (a crucial factor in effecting service change).
National postal surveys of all UK assisted conception units and regional paediatric oncology centres were also undertaken to document common practices, areas of variance and professional issues.