Data

Although your personal data is very important, researchers are not usually interested in an individual’s data. What’s important for them is the way that the data from thousands, or even hundreds of thousands of patients can be compared.

To maintain your privacy, information that could identify you is removed from your health records and data.

In some cases (for example in a particularly rare disease) it may be possible to link different types of data together, such as age bracket, date of diagnosis, name of rare disease, etc. This could point to one individual. Genomics England monitors requests for access to data and the behaviour of researchers to ensure this isn’t abused.

  • Genomics England always protects your data and controls who has access to it
  • The National Genomic Research Library allows researchers to use the following de-identified information:
    • Your clinical test data
    • Electronic copies of all of your records from the NHS, your GP and other organisations (such as NHS Digital and Public Health England)
    • Information about any illnesses or stays in hospital – including information that you may not think are related to you or your family’s diagnosis
    • Copies of hospital or clinic records, medical notes, social care, and local or national disease registries
    • Relevant images from your NHS records, such as MRI scans, X-rays or photographs
    • Genomics England is constantly working to identify new sources of health data to include which is important for research
    • Your original records remain within the NHS
    • Where possible and appropriate, Genomics England will look to obtain and make available data from other research studies so that your data can be compared against more people
    • Your records will continue to be updated throughout your lifetime, for as long as you give us permission to. This includes information added after your death, unless you have withdrawn from the Library.

Need to know:

“Why do you need my lifelong data?”

We need to know what happens to you next (health-wise). For instance, if you had a serious illness – did you get better or not? If some people who had that illness but got better quickly, there may be clues in their genome that tell us why. This may allow development of better treatments or diagnostics for others.

  • Those who have access to the National Genomic Research Library will be researchers who are trying to better understand diseases and how to treat them
  • Researchers may come from all over the world, pooling international data and research gives the best chance of new discoveries
  • Approved researchers may work for not-for-profit organisations, such as research charities, universities or hospitals, and for-profit (commercial) companies such as drug or technology companies. They will only have access to your de-identified genomic and health data in the National Genomic Research Library if they apply and are approved by Genomics England
  • The NHS does not develop or test medicines itself and has never done so. The NHS works in partnership with commercial companies to do this so that patients benefit as quickly as possible from new discoveries.
  • Information about the research groups, projects and companies Genomics England works with is available on the website: https://www.genomicsengland.co.uk/about-gecip/research/
  • The National Genomic Research Library brings together lots of data from different sources, so Genomics England will always make your data available to the NHS if they need it for your clinical care
  • Research must be in line with the acceptable uses as detailed in the Research Ethics Committee approved Protocol.
  • Helping to find new treatments and possibly cures for a wide range of health conditions
  • Researchers might use the data in the National Genomic Research Library to try and find new, faster ways to analyse large amounts of data
  • Researchers may publish the results of their research in scientific journals. They may also present their results at scientific meetings. It is important for scientists and doctors to share results to help research advance as quickly as possible. You will not be identified when they do this
  • New drugs and diagnostic tests will be developed by the NHS, universities and companies across the world using this data
  • Researchers will be able to find opportunities for you, and others like you, to take part in clinical trials or other relevant research projects
  • Genomics England will not allow access to any data for insurance purposes
  • Genomics England will not allow access to any data for marketing purposes
  • No speculative searches of the National Genomic Research Library will be allowed by anybody. The Department of Health and Social Care has had confirmation from the Home Office and the Association of Chief Police Officers that they will not seek access to Genomics England’s data without presentation of a court order
  • For further details of unacceptable uses, please see the list as detailed in the Research Ethics Committee approved Protocol
  • All patient data is held in secure facilities based in the UK
  • Apart from in very rare situations, all of the data stays within the secure, monitored environment where it can be analysed by researchers; In this way, Genomics England considers the National Genomic Research Library to be a reading library – not a lending library
  • In rare situations where there is a clear potential benefit to patients, a copy of requested data might be provided to approved researchers for study. Any request will be reviewed by a number of committees (https://www.genomicsengland.co.uk/understanding-genomics/data/current-research/) and the copy will be destroyed after the research is completed
  • If you want information about how Genomics England processes your data see here: https://www.genomicsengland.co.uk/privacy-policy/
  • In some cases, it may be possible for Genomics England to provide the data we hold about you. For more information see here: www.genomicsengland.co.uk
  • Genomics England continuously reviews the latest best practice for secure storage
  • Data security is Genomics England’s most important concern. It uses industry-standard tools and techniques to prevent unauthorised access and regularly undertakes security tests
  • The National Genomic Research Library has to meet laws and standards to protect your data
  • All requests by researchers to access data is reviewed in two stages by a committee; this ‘air-lock’ process protects the security and integrity of the data
  • The same approval processes are in place for all researchers:
    • Research applications are reviewed by an independent Access Review Committee; this is overseen by Genomics England and the NHS England. This includes patients who have their own genomes and data in the dataset
    • Researchers have to have their identities checked and confirmed
    • The researcher’s organisation is required to sign legal documentation
    • Only when approved are Researchers given secure access to the National Genomic Research Library
  • All research activity is monitored by Genomics England
  • Maintaining your data security and protecting your privacy is very important to Genomics England. Any researcher who attempts to re-identify your data (and thus “identify” you) is highly likely to be found out.
    • Penalties are in place for any organisation or individual who breaches or attempts to breach your confidentiality.
    • Penalties include: Removal of access (including access by the organisation the individual is contracted to), the reporting of the offending activity to the Information Commissioner’s Office (ICO) which may result in significant fines or even imprisonment
  • Of course, even with the best data security, unauthorised access or ‘hacking’ will always be a possibility, as has occurred from time to time for data such as credit card details and email accounts
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