Useful links

Please see below for other useful resources that you may find helpful.

  • NHS overview of genetics

    The NHS overview of genetics provides a thorough and clear guide about what the NHS offers in terms of genomic (genetic) testing. This includes who can get a genomic test, why, and what your geneticist can tell you, as well as an explanation on how your data will be used.

  • Genetic Alliance UK

    Genetic Alliance UK is an umbrella charity organisation which encompasses Rare Disease UK and SWAN UK (Syndromes Without a Name). Genetic Alliance UK works on a variety of issues that families and individuals with genetic conditions face, providing information, supporting families and influencing the services needed for patients.

  • Gene People (formerly Genetic Disorders UK)

    Gene People is the new name of the charity Genetic Disorders UK. Following their recent re-launch, they are expanding their genetic counsellor-led helpline service. Their helpline is for patients, family members, professionals and the public with questions or concerns about any genetic condition, diagnosis, testing, referrals or support. It is a free, confidential and non-judgemental service available for people whenever questions come to mind or they feel ready to speak.

  • Macmillan Cancer Support

    Being one of the largest Cancer charities in the UK, Macmillan Cancer Support provides expert information, support, tools and inspiration to those living with cancer along family and friends who are also affected by cancer. This charity especially looks into the emotional, physical and social impact cancer can have and campaigns for better cancer care.

  • Guidance for the feedback of rare disease results from the 100,000 Genomes Project (Health Education England)

    Health Education England’s Genomics Education Programme is a rich source of information for all things genomics. This article points to a two-page guide to support clinicians in returning results to patients with a suspected rare disease. The guide takes you step by step through aspects to consider, and offers advice from patients on how to deliver the feedback.

  • Genomics England YouTube channel
  • The Genomics England YouTube channel is a library of educational videos created by Genomics England, as well as recorded lectures and seminars. These insightful videos also include participant stories from the ongoing 100,000 Genomes Project, clips explaining our COVID-19 study and our latest programme – the Public Dialogue on Newborn Screening.

  • Insurance and genetic testing:
    • ABI Code on Genetic Testing and Insurance (PDF)

      The Code on Genetic Testing and Insurance is a voluntary code of practice and agreement between HM Government and the Association of British Insurers (ABI) on the role of genetic testing in insurance.

    • GOV.UK Code on genetic testing and insurance: consumer guide

      This guide aims to help consumers understand what information they need to provide to their insurance company about any genetics tests they may have had. It explains what their insurance companies do and do not need to know about said tests when applying for insurance.

  • Understanding Patient Data

    Patient data is used to provide better care and improve health in various different ways. Understanding Patient Data’s website provides case studies for those wanting to explore and understand more about patient data and the use of this data.

  • How your data is looked after in the NHS

    This NHS Digital page is available for those wanting to understand the health and care information that the NHS collects along with a detailed explanation of your choices on information such as opting out of sharing your confidential patient information. It also explains NHS Digital’s legal right to collect health and care data and how the NHS uses personal data in line with the GDPR (General Data Protection Regulation).