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Restrictions on the disclosure of information about patients receiving fertility treatment should be removed

3 December 2007
By Michael Litos and John Parsons
Assisted Conception Unit, King's College Hospital, London
Appeared in BioNews 436
This week, the UK's House of Lords is debating the draft Human Fertilisation and Embryology Bill. Drawing up new legislation offers a chance to ensure that ethically sound research and practice continues to flourish in assisted reproduction, embryology and related areas. As practitioners, we believe that one issue ripe for reconsideration is the confidentiality requirements for patients undergoing fertility treatment.

In our opinion, Section 33 of the Human Fertilisation and Embryology (HFE) Act 1990 was ill conceived. Confidentiality was thought at the time to be of the utmost importance and tight restrictions on the disclosure of information were incorporated into this section. It is likely that these restrictions were included primarily to ensure that the identity of gamete donors, gamete recipients and the resultant children was kept secret. The restrictions were applied to all persons under going licensed treatment in spite of the fact that gamete donation makes up only a small proportion of the treatments administered in assisted conception centres.

Soon after the HFE 1990 Act came into force it became clear that the restrictions on the disclosure of information were interfering with safe clinical practice. Subsection (5) made disclosure of identifying information to anyone including the patient's General Practitioner an offence and it was illegal for a licensed practitioner to instruct their lawyer should he or she be sued by a patient. In 1992 the Human Fertilisation and Embryology (Disclosure of Information) Act was passed. This allowed identifying information about the provision of treatment to be disclosed with the patient's consent and in certain circumstances, including an emergency, without their consent.  

Although this relaxation was helpful the restriction on disclosure of information in the 1990 Act remains an impediment as health care professionals may still not communicate without specific written permission from the person receiving licensed treatment. The Human Fertilisation and Embryology Bill 2008 currently making its way through the House of Lords has numerous exceptions to the restrictions including a provision that will facilitate the collection of data for research but if passed without amendment written consent will still be required before staff working in licensed centres may discuss their patients receiving IVF, gamete storage or gamete donation with anyone not licensed by the Human Fertilisation and Embryology Authority.

There is no evidence that patients receiving IVF treatment are more sensitive about the confidentiality of their treatment than patients with other reproductive problems. The House of Commons Science and Technology Committee report on Human Reproductive Technologies and the Law (March 2005) concluded that the confidentiality provisions 'are unnecessarily onerous and inconsistent with the widespread use of assisted reproductive technologies'

At King's College Hospital we randomly reviewed 361 sets of patient's notes. Disclosure of information about licensed treatment to the General Practitioner had been refused by 22 women or couples, of these donor sperm had been used on 18 occasions. We conclude from this that it is unusual for patients receiving treatment with their own gametes to want confidentiality over and above that afforded by the normal confidential relationship between a patient and their doctor.

On the other hand patients using donor gametes do want to take advantage of the opportunity to restrict information as to who knows the man is not the genetic parent of a child born following treatment. Seventeen years ago those that drafted the 1990 Act were of the same view but opinion has swung strongly in favour of donor children having a right to know that they were conceived using donor sperm and access to identifying information as to their genetic parent.

Parliamentarians should support a move away from the misconceptions that under pinned the views taken in 1990 and remove restrictions on the disclosure of information in relation to those patients receiving treatment with IVF and/or donor gametes.

27 January 2008 - by Dr Charlotte Maden 
Stringent new laws on the use of human embryonic stem (ES) cells in experiments are being planned by the UK Government. This will delay critical research into life-threatening diseases, according to a group of leading scientists. The proposed laws are part of the revised Human Fertilisation and...
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