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Handling Research Data 

We will share your non-identifiable information related to this research project with the following types of organisations:

  • Organisations performing similar research, including for-profit companies looking to develop solutions for women’s health.

  • Organisations that help us look into a specific aspect of your sample (e.g. the University of Manchester will be looking at proteins, companies like Nordic Biosciences may work with us to develop new biomarkers for diagnosis, pharmaceutical companies developing therapies in women's health, etc.).
     

We will keep all information about you safe and secure by:

  • Storing your personally identifiable information separately from your clinical data and experiment results. 

  • Pseudonymisation of your data to ensure separation from your personally identifiable information. This means the person handling your samples will not know they are yours. 

  • Providing access to your data on a strictly need-to-access basis.
     

International Transfers

 

We may share or provide access to data about you outside the UK for research related purposes to:

  • Share some aspects of your data with our academic collaborators within the EU. 

  • Centralise knowledge in the women’s health field by combining our information with other key players in and outside of the UK.  

  • Engage in partnerships that may further the development of treatments in women’s health.

 

If this happens, we will only share the data that is needed. We will also make sure you can’t be identified from the data that is shared where possible. This may not be possible under certain circumstances – for instance, if you have a rare illness, it may still be possible to identify you. If your data is shared outside the UK, it will be with the following sorts of organisations:
 

  • Academic institutions and groups within them performing research in women’s health. 

  • Commercial institutions such as pharmaceutical companies and other biotechs with whom we may look to partner to develop treatments in the field. 

 

We will make sure your data is protected. Anyone who accesses your data outside the UK must do what we tell them so that your data has a similar level of protection as it does under UK law. We will make sure your data is safe outside the UK by doing the following:
 

  • Some of the countries your data will be shared with have an adequacy decision in place. This means that we know their laws offer a similar level of protection to data protection laws in the UK.

  • We use specific contracts approved for use in the UK which give personal data the same level of protection it has in the UK. For further details visit the Information Commissioner’s Office (ICO) website: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/international-transfers/

  • We do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says.

  • We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing.

  • We have procedures in place to deal with any suspected personal data breach. We will tell you and applicable regulators when there has been a breach of your personal data when this is legally required. For further details about UK breach reporting rules visit the Information Commissioner's Office (ICO) website: https://ico.org.uk/for-organisations/report-a-breach

  • We have contracted extra cyber insurance to ensure that where your data is not meant to be shared, it is protected by experts in the field of cyber security.

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