Clause 24
Human Fertilisation and Embryology Bill [Lords]
10:30 am
Evan Harris (Shadow Minister, Innovation, Universities and Skills; Oxford West and Abingdon, Liberal Democrat)
I take this opportunity to welcome you to the Chair, Mr. Hood. We have made excellent progress and I am sure that we shall do so today. As I said during the debate on the amendments to the clause, I have a couple of brief questions to ask. What is the basis for the current amount of data that is collected? The main problem that has been raised with me is the regulatory burden of a full amount of information given in the register of information for all treatment cycles, the majority of which do not result in a pregnancy.
We have debated why it is necessary to maintain a register of information in respect of the treatments that produce a pregnancy and a child. There are at least two main reasons. The first is to enable contact to be made in the future, if requested by a child born through in vitro fertilisation, particularly in respect of donor gametes and non-identifying or identifying information about the genetic parent when the person is not the legal or social parent. The second reason is to ensure that the data is accurate on the outcomes of IVF clinics, given the nature of the business and the relatively high stakes involved compared with other businesses, and thus the potential vulnerabilities of the patients, who are the consumers of the business. The clinicians understand those two reasons, but they ask why it is necessary to have identifying information in such great detail about all patients even when a pregnancy does not result or is not known to result. I imagine that reasons will be given for such action, but I just want to deal with them in advance.
It is necessary to retain information in case of adverse effects of some treatment. However, in that sense, it is not different from any other treatment. It is necessary for medical records to include information so that it is possible to track any potential problems caused by drugs. The potential for risks would be the same as that posed by full medical treatment, but for no other full medical treatment is there a central database, especially on treatment that does not result in pregnancy on which a huge amount of information is collected with patients’ names attached. The clinics that have contacted me about such matters understand that it might be necessary to provide information centrally and use patient numbers, but identifying patients would provide an additional burden that they consider unnecessary unless pregnancy results, in which case such a situation should be possible. I have dealt with the second argument for the need to collect the data and information about outcomes so that success rates are recorded. However, that can be done without the need for detailed, identifying information as set out under the Bill.
Will the Minister say whether the Human Fertilisation and Embryology Authority has received the same representations as I have about the extent to which the regulatory burden of the register of information and requirements will be onerous? Does it recognise that there might be scope for reducing the amount of information, particularly identifying information, that is held on a central database for no good reason over and above the reason that such information is available in medical notes on safety and outcome measures, when no child is produced or known to have been produced? If it recognises that that is a regulatory burden, has any consideration been given to how it could be reduced? While that might have been appropriate in 1990, standard IVF and insemination, particularly where, sadly, it does not result in a pregnancy, are now routine medical techniques and interventions.
It is peculiar that for those routine medical interventions, a great amount of information must be submitted to a central database which has not as yet been used for any research purpose. Without having a central database of identified patients, it is still possible to do research where non-licensed treatments—which could be more extensive in terms of drugs and surgery—are not subject to such requirements. It is a valid point, and I would be interested to hear the Minister’s response.