Science Fiction—Women will Give Birth to their Aunts or Uncles
The warnings we gave regarding the powers given to the Human Fertilisation and Embryology Authority (“HFEA”) through the issuing of regulations by the Human Fertilisation and Embryology Act 2008 (“HFEA Act 2008”) are being realised. It is vital the public knows exactly what is going on here. The HFEA has been given extraordinary and frightening powers in relation to the embryo. The HFEA, the public authority charged with regulating matters concerning the embryo, is consulting on 4 sets of proposed regulations that would change the regime that governs IVF. Please respond to the Consultation. The more people that register concern the more pressure there will be on the HFEA to do the right thing. Use this bulletin to send your comments to: hferegulations@dh.gsi.gov.uk by 30th March 2009.
The first set of regulations deal with a person who has or is likely to develop significant and premature infertility (for example as a result of cancer treatment). These regulations propose to extend the storage of gametes (eggs or sperm) or embryos from the current limit of 10 years (as increased from 5 years for embryos by the 2008 Act) to up to a total of 55 years, for use in IVF treatment. Little account is taken of the safety of freezing for such extended periods. There are no rules preventing close relatives who would normally be forbidden to marry each other from donating gametes or embryos. This means that grandparents could donate embryos to their granddaughter for her IVF treatment if she becomes infertile. In this situation, the granddaughter would give birth to her mother’s brother or sister—her aunt or uncle.
Additionally, the previous rule banning the woman who is being treated from being able to access extended storage because she is a surrogate mother is removed. The changes are the result of a single case being highlighted in Parliament, in which a mother with a Turner Syndrome daughter wanted to extend storage of her eggs so that her daughter could use them. This would result in her daughter giving birth to a child who was both her half-brother or sister and her son or daughter.
The potential commercial exploitation of such rules is enormous. It could result in older parents trying to defeat nature. 62 year-old women could act as surrogate mothers for a man with no partner who is allocated embryos by a clinic. Theoretically there would be nothing to stop a 35 year-old soon-to-be-infertile man from having his sperm stored until he was 90, or alternatively, from storing his parents’ embryos and using them to have a child years later, after his (and the child’s) biological parents had died. That child would be both his own brother and his own son. Relying on the clinics to argue for the welfare of the resulting children and for age-appropriate use of IVF places an undue burden on the clinics and history shows that it isn’t a sufficient safeguard. Such permissive regulations, which can be passed without Parliamentary debate should not be allowed in a civilised society.
The regulations also allow for embryo storage for up to 55 years following embryo testing. The embryos tested are those that are at particular risk of suffering from a genetic abnormality, or whose tissue may be suitable for transplanting into an older sibling who suffers from a serious medical condition, “spare–part siblings”. There are no safeguards and the only condition is that the gamete and embryo providers have consented.
Clinics Favoured over Public Interest Groups in the Granting of Licences
The second and third sets of regulations establish appeal procedures to internal committees for those whose licence has been refused, revoked or varied. This favours licence applicants. Not only can they object to the refusal of their licence to two committees internally, but they also have a right to appeal to the High Court on a point of law. This compares very favourably with any public interest group, which has no right of internal appeal against any decision of the HFEA to grant a licence. Instead, as demonstrated by the Christian Legal Centre and Comment On Reproductive Ethics, who last year brought a challenge to the HFEA on its granting of licences to create animal-human hybrids, the only means of challenge is a high-risk and enormously costly Judicial Review procedure, which could wipe out any residual funds of any public interest group as they so often operate under real financial constraint.
The HFEA keeps a register that holds details of IVF patients, their partners, any offspring and all gamete and embryo donors. It represents one of, if not the most, comprehensive collections of data of this type in the world. The fourth set of regulations proposes to allow researchers to pay a fee to access this database to conduct research. This would allow disclosure, without consent, for records from 1st August 1991 to 30th September 2009. Whilst research into the effects of IVF on patients’ health is useful and the most sensitive data on the use of donor gametes would not be disclosed without consent, generally there is no attempt made to obtain consent, as this is considered to be a too costly an option. Additionally, the regulations allow for many of the HFEA’s functions, except authorisation decisions, to be contracted out with no further conditions for the contracting-out or agency arrangements.
Patient Data at Serious Risk
The fourth set of regulations will also allow researchers access to a patients’ non-IVF-related NHS records without their consent. This is presumably to allow researchers to look at data on offspring, but the consultation does not spell this out. The suggested safeguard is that the HFEA takes account of the views of the Patient Information Advisory Group. The only real safeguard appears to be Research Ethics Committee approval. The regulations need to state clearly that only information that does not identify the patient will be provided to third parties, but they do not.
Whilst there is a reassurance given that individuals can refuse to consent to disclosure for the purposes of these regulations, the regulations provide no information on how to do so, and no draft forms that patients can fill in.
The consultation allows people to send in their comments on the 4 proposed regulations. The closing date for the consultation is Monday, 30th March.
CCFON and CLC are in the process of producing a response to the consultation that we hope to make available shortly.
This is the link to the consultation:
http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_092465.