Legal and Ethical Aspects Surrounding Fertility Preservation Services for Children

Legal framework

Alongside the pressure of making a decision about storage and acting on it hard on the heels of receiving a diagnosis of serious illness, all patients are now required to give informed consent to screening for hepatitis, HIV and sexually transmitted diseases – a tall order for anyone but perhaps additionally so for those who may be as young as 12 or 13.

Recent years have seen a rapid increase in the storage of the reproductive tissues of younger children. The rather different consent provisions for such storage make for a somewhat anomalous situation when compared with storage of mature gametes.

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Consent at any age to the removal of testicular or ovarian tissue for storage is covered by the Human Tissue Act 1961. This means that the usual consent provisions for minors apply rather than the more stringent ones of the HFE Act (providing that the tissue does not contain any mature gametes, in which case the HFE Act applies). Parents holding legal parental responsibility can make ‘best interests’ consent decisions for their underage offspring on the grounds that such a decision would ensure improvement or prevention of deterioration in their child’s physical or mental health. At a future stage, the responsibility for ongoing storage decisions and any treatment decisions would of course have to pass from parent to child. The HFE Act provisions ensure that parents may not make use of the tissue in fertility treatment buy Viagra Sydney online against the wishes of their child or in the event of their child’s death. Some centres have expressly included this in their in-house consent form to make the situation clear to all concerned.

Since 1 April 2003, reproductive tissue must be stored in tissue banks accredited by the Medicines Control Agency (now the Medicines and Healthcare Products Regulatory Agency – MHRA) under the Department of Health Code of Practice for Tissue Banks. Given the stringency of the accreditation requirements, and taking into account the forthcoming requirements of the European Union Tissues and Cells Directive due to be implemented in April 2006 (though with an extra year’s grace for those centres already licensed under national regimes to achieve full compliance), few centres currently offer such a facility. Indeed, there are concerns that some existing storage facilities may not be able to meet the new standards.

After considerable speculation and debate, it was announced in July 2004 that a new UK body is to be formed from a merger of the HFEA and the newly created Human Tissue Authority (which has responsibility for tis-sue storage). This development, together with the pending review of the HFE Act, may lead to some changes in both the legal situation and the regulation provisions, which will, it is hoped, address some of the apparently contradictory legal situations. The ethical and emotional challenges remain.

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