31 May 2012
Dear Colleague,
Extension of storage of gametes and embryos where one of the gamete providers is deceased
The HFEA often receives enquiries about extending the storage period of gametes or embryos when a gamete provider has died and the storage period is about to expire. Patients can, of course, consent to the use of their gametes after their death. However, the gametes can only be used if the storage period has not expired.
Sometimes, when a patient dies unexpectedly, the storage period may be close to expiry and it cannot be extended without the gamete provider’s consent. The surviving partner is then faced with having treatment before the expiry date (normally something they do not wish to consider so soon after losing their partner) or facing the prospect of not being able to have treatment with the gametes at all.
These cases are always tragic and we would clearly wish for patients finding themselves in these circumstances to be able to extend the storage of gametes or embryos where desired. However, this is not always possible. The aim of this letter is to remind you about the law in this area, to set out the steps that you could take to avoid such circumstances arising and, where they unfortunately do, what you can do to deal with it.
Consent and the law
The law on this issue is clear: gametes and embryos should only be stored where there is effective consent. The HFEA has no powers to authorise extended storage where the consent provisions laid out in the Human Fertilisation and Embryology Act 1990 have not been complied with.
Further, HFEA Directions specify that consent must be provided on a designated form. We do this to ensure that consent is properly taken and understood. The HFEA form provides an opportunity for a gamete provider to document their consent in relation to possible scenarios, including posthumous parenthood. In the absence of such information a gamete provider’s consent may not be clear, which could impact on the future use of the gametes.
What you could do to avoid such situations arising
In our experience, these situations are more likely to arise where patients are routinely asked to restrict their storage to a period of only two or three years. We know that centres ask patients to do this either to encourage them to maintain regular contact; to avoid gametes and embryos being stored longer than the patient need them to be; or, on occasion, to ensure that payment for on-going storage is received.
If your centre asks patients to restrict their storage to a period less than the maximum permitted by the law, there is a higher risk that in the event of a patient dying the gametes or embryos cannot continue to be stored, causing significant distress. We strongly encourage you to consider the impact of this practice, particularly in circumstances where individuals have life-threatening illnesses.
What you can do when such a situation arises
Where there is uncertainty or a dispute as to whether effective consent is in place permitting an extension of the storage period of gametes and embryos where one gamete provider is deceased, we strongly recommend that you seek your own expert legal opinion. Whilst we can refer you to the relevant consent provisions in the Act, we cannot provide legal advice on particular cases. If the independent legal opinion supports the conclusion that there is effective consent to on-going storage then it is the responsibility of the centre to decide whether to continue to store.
If you conclude that there is effective consent and decide to continue to store the gametes or embryos, you must document your rationale for doing so and retain all supporting documentation in the patient notes. That evidence can then be considered by the HFEA at a future inspection.
If you receive notice of legal proceedings to obtain an order allowing continued storage, then it is reasonable to continue storing the gametes until such time as the legal proceedings are settled.
Thankfully, the situations described in this letter are rare. However, when they do arise, they cause significant distress, for centre staff as well as for the patients themselves. I hope that this letter helps you to minimise the chance of such situations arising and to handle them well on the rare occasions that they do.
If you would like to discuss any aspect of this letter further please contact your Inspector in the first instance.
Yours faithfully
Peter Thompson
Chief Executive
Page last updated: 24 August 2012