Patients and partners receiving treatment using their own sperm, eggs or embryos

A clinician talking to a patientSince 1 October 2009, under new legislation, researchers have been able to apply to access identifying information held on the Register.

If you are registering to start treatment or storage at an HFEA licensed fertility centre on or after 1 October 2009, you will be asked whether you would agree to your identifying information being used in research.

The information below is to help you decide whether or not you wish to consent to this.

 

What the identifying information might include

'Identifying information' is something that either alone or when combined with other information can lead to your identification by a third party. Examples of identifying information that is held on the HFEA Register may include your name and your date and place of birth.

 

Who might be allowed to use the identifying information

Identifying information will only be available to researchers linked to a recognised research institution for projects which have received approval from a research ethics committee and it will not be disclosed to other parties.

We would only provide identifying information if we think it really necessary, to allow important research to be done.

 

How the identifying information would be used

Record linkage

The main use of identifying information is to link information held on different registers or databases.

Example:

it is possible that researchers may want to link the HFEA Register on IVF with information on the NHS Central Register or data held by Hospital Episode Statistics and a minimum amount of  identifying information (eg, one or two identifiers) could be released in order to do this.

Medical research

Researchers could use identifying information to carry out medical research.

Example:

researchers could investigate the type of infertility patients have, their lifestyle in relation to their treatment or its outcome. Also, they could investigate the safety and efficacy of fertility treatments and develop new treatment and storage techniques.

Social science research

Researchers could use identifying information to carry out social science research.

Example:

researchers could investigate the social characteristics (age, occupation, ethnic group) of those who seek fertility                   treatment, patients’ treatment experience or the effect of national policies such as the HFEA multiple births policy.

Contact and non-contact research

Some research can be done without direct participation from patients and is known as non-contact research. If you only agree to this, you will never be contacted about research, however, data which is routinely collected during the course of your treatment could be used by researchers to help answer questions about risks or outcomes of fertility treatments.

Other research requires direct participation from patients and is known as contact research. Your centre will ask if you are willing to participate in this type of research. If you agree to this, a member of staff from your centre will contact you if there is a particular research study you may be suitable for. Your participation might range from minimal (such as a short questionnaire) to more extensive involvement (such as long-term longitudinal studies involving those born as a result of treatment). You will always be asked to give consent and will be free to withdraw this at any time until your information is used in the study.

 

 

Safeguarding your data and confidentiality

We are committed to safeguarding your confidential information. It will only be shared with researchers who are committed to the same standard.

Research project approval. All applications by researchers to access patient-identifying information on the HFEA register will have to be approved by the HFEA.

  • Research institutions. Patient-identifying information will only be available to researchers linked to a recognised research institution on projects which have received approval from a research ethics committee. The information will not be disclosed to other parties. 
  • Published findings. Where researchers publish their research findings, it will always be ensured that you cannot be identified from the published research.  
  • Ethics committee approval. We intend to ask the Ethics and Confidentiality Committee of the National Information Governance Board for Health and Social Care to review all medical research applications to ensure that releasing the information is in the public’s interest.

 

How to get involved

Giving consent - If you are willing to allow researchers access to your identifying information held on the HFEA Register, you must complete the HFEA consent form ‘Disclosure of identifying information’ (CD form). This will be provided by your clinic when you register.

The CD form allows you to consent to researchers using your identifying information on the HFEA register and allows you to specify whether this is for the purpose of non-contact and/or contact research.

Returning for treatment - If you have received treatment and completed a CD form at an HFEA clinic before, then you do not need to complete a new form. The consent you gave on your original CD form will be applied to all your information held on the HFEA Register, including any related to your new treatment.

Withdrawing or varying consent - You will be able to make changes to or withdraw your consent at any time. If you wish to vary or withdraw your consent given on the CD form, you should instruct your centre of this in writing, preferably by completing a new CD form. Your centre will be able to provide you with this.

Alternatively, if since registration your centre has closed, and you wish to make any changes to your consent, please contact the HFEA at research.consent@hfea.gov.uk.

Page last updated: 26 July 2012

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