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How we manage your data

Clinics are required by law to collect personal details of patients and donors involved in treatment and to submit this information to us. Find out more about the information we hold, how it’s used anonymously and how researchers can use your identifying information with your consent.

What information do you hold about me?

In the course of treatment, storage or donation, licensed clinics are required by law to collect information about patients, their partners and donors. Some of this information is forwarded to us and held securely on our database.

This information includes:

  • your name
  • your date of birth
  • your place of birth 
  • the number of embryos transferred in treatment 
  • whether your treatment led to a pregnancy
  • the weight and date of birth of any babies born
  • whether you had a multiple pregnancy.

How is my information used?

Anonymous data

Anyone can access anonymous information (information that cannot reveal your identity) about the different fertility treatments that are being carried out and the outcome of those treatments.

This information is extremely helpful to medical professionals, researchers, journalists, students and many others who are trying to understand more about issues surrounding fertility. You don’t need to give your consent to your anonymous information being shared.

 

Identifiable data

If researchers want to use information that identifies individual donors or people having treatment, either with their own eggs, sperm and embryos or with donated eggs, sperm or embryos then you need to give your consent for this unless you had treatment with your own eggs, sperm and embryos between August 1991 and 1 October 2009 (see more below).

Identifying information is a very valuable resource for researchers and could be used to carry out medical and social research. It could, for example, be used to investigate the safety and efficacy of fertility treatments, develop new treatment and storage techniques and study the effect of national policies, such as the HFEA multiple births policy. It can also be used to link fertility treatment data with other healthcare records for example, to see whether IVF affects the health of women or their children.

Identifying information we collect about you includes:

  • name (current and previous names)
  • date of birth
  • place of birth
  • country of birth
  • NHS number.

Identifying information we collect about any children born from your treatment includes:

  • name
  • date of birth
  • place of birth
  • country of birth
  • NHS number
  • birth weight.

I’ve consented to my identifying information being shared, are there any rules around who can access it?

Yes, identifying information will only be available to researchers linked to a recognised UK research institution. Projects also need to have received approval from a research ethics committee.

We only allow researchers to use identifying information in cases where their research couldn’t be conducted without it.  

Will my personal information be published in a research project’s findings?

No. Where researchers publish their research findings it won’t be possible to identify you.

I had treatment between August 1991 and 1 October 2009, what do I need to know?

Since 1 October 2009, under new legislation, researchers have been able to apply to access identifying information for patients involved in treatment between August 1991 and September 2009 (and any children born as a result of treatment) without getting their consent. This does not apply to donors or those receiving donated eggs, sperm or embryos.

View the legislation

If you’ve had treatment during this time and you’d prefer that your information was not shared, please contact us.

Your identifying information will only be given to researchers who have approval from a research ethics committee and the Confidentiality Advisory Group.

How do I consent to my identifying information being used in research?

If you’d like researchers to be able to use your identifying information, please contact your clinic and they’ll help you to complete the necessary forms.

Find out more about giving consent

If I agree to being contacted in the future for research purposes, what does this involve?

In some cases, researchers need direct contact with patients in order to carry out their research – this is called contact research. Your participation could involve completing a short questionnaire, or it could require more extensive involvement, such as a long-term study which involves regular contact with researchers.

If you agree to participating in this kind of research, staff from your clinic will get in touch with you when there’s a new study and you can choose whether or not to take part. You’re free to withdraw your consent at any point up until your information is used in the study.

What kind of research projects are currently being conducted?

Two of the largest studies that have been run examine whether there is a link between fertility treatment and cancer in women and children. These simply wouldn’t have been possible without using identifying information.

Who can I talk to if I have questions about how my data’s used?

If you have any questions or concerns about how your personal information is managed, just contact us and we’ll be happy to help.

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Review date: 8 November 2019