On 1 October the law changes and there will be new rules governing the information held by the HFEA that identifies patients.Patients who were treated before 1 October will have to opt out if they do not wish their information to be included in research studies using patient identifiers.

For more information see the attached document which includes information from the HFEA website or visit www.hfea.gov.uk 

More information on safeguarding your data is available here: http://www.hfea.gov.uk/5387.html and you can change your consent requests by emailing here: research.consent@hfea.gov.uk.

Tracey

Infertility Network UK is concerned that many patients may not be aware of the fact that from 1st October the change in the law means that there will are new rules governing the information held by the HFEA that identifies patients.  Patients who were treated before 1 October may not know that they will have to opt out if they do not wish their information to be included in research studies which may use identifying information. 

We have not had much in the way of feedback so far from patients – can you please let us know what you think of this change, whether you agree with it or whether you feel that the HFEA should not be passing on information which patients did not at the time of treatment (perhaps some time ago) consent to being shared with third parties.  Please email me susanseenan@infertilitynetworkuk.com and let me know your views so that we can be sure we are making those views known on your behalf.  We will not share your individual views with anyone, but will only put together a summary of patient views based on your replies so please be assured that confidentiality will be maintained.

Thank you,

Susan

IMPORTANT INFORMATION FOR PATIENTS RE DISCLOSURE OF INFORMATION TO RESEARCHERS

Human Fertilisation and Embryology (Disclosure of Information for Research Purposes) Regulations 2010 - these regulations come into force on Tuesday 6th April 2010 and create a process for research bodies to apply to receive identifying information held on the HFEA's register where consent to the disclosure cannot be obtained from the persons to whom the information relates. They cover register data about patients, their partners and offspring collected between 1st August 1991 and 30th September 2009 and information about children (under 16s) born as a result of treatment added to the register from 1st October 2009.

The Regulations exclude the release of any identifying information relating to the donation and subsequent use in treatment of gametes and embryos and any data where the person to whom it relates (including the parent/guardian of a child) has refused to consent to its disclosure. In line with the second exclusion, people with information on the register can block the disclosure of the identifying elements by informing the HFEA of their wishes.

The register will of course be a valuable research resource that will help patients and their children by contributing vital information to research into the long-term implications of fertility treatments and services. However, it is important that patients know about this so that they can make a choice. It is hoped that people will be prepared to allow their information to be used for research, because of the strict controls attached to its use, but if they feel they can't permit this they can instruct the HFEA to withhold identifying information.

Please follow the link at the bottom of this page for more information