Library and resources

These can now be found here.

These are available in our section for NHS Genomic Medicine Centre staff. Rare disease documents. Cancer documents.

• The 100,000 Genomes Project Protocol has now been superseded by The National Genomics Research and Healthcare Knowledgebase
• Ethics approval letter

• Guidance for expressions of interest to form domains within GeCIP
• See our GeCIP section for all documents including Participation Agreement, IP Policy and GeCIP Rules.

Public Engagement reports – 2019

• A public dialogue on genomic medicine: time for a new social contract? (Ipsos MORI) – April 2019
• Genome sequencing and the NHS: The views of rare disease patients and carers (Genetic Alliance UK) – July 2019

The Genomics Conversation Reports – 2016

• Final report – An Overview of the Genomics Conversation 2016
• PHG Foundation Conversation with Clinicians Report – September 2016
• All-Party Parliamentary Group (APPG) on Personalised Medicine Meeting – July 2016

Other documents and reports 

• Black African and Black Caribbean Communities: A Qualitative Exploration of Views on Participation. Dr Sophia Skyers, Director, CIBS IQ Research
• Earning Trust: Public Engagement and Patient Involvement Strategy 2015-17. Genomics England
• Potential Participant Literature: Research Report November 2014. RandallFox
• What do patients with rare genetic conditions think about whole genome sequencing in the NHS? Research Findings for the 100,000 Genomes Project November 2014. Genetic Alliance UK
• Ethical issues relating to involvement of cancer patients in the 100,000 Genomes Project. Qualitative Research Findings October 2014. GfK NOP
• Research on Genomic Data Sharing. Qualitative research report September 2014. Solutions Research

• A framework for industry engagement (PDF)

• See all Privacy Notices here
• Participant data request (Subject Access Request)

• Science Working Group report
• Data Working Group report
• Ethics Working Group

• 10 July 19 – Complaints about ELT
• 2 May 19 – Data security
• 1 May 19 – Staff employed by consultants
• 15 Apr 19 – IT hardware
• 3 Apr 19 – Subject Access Requests
• 2 Apr 19 – ELT salaries
• 2 Apr 19 – Current workforce
• 16 Feb 19 – Work visa sponsorship
• 13 Feb 19 – Organisation chart and staff salaries
• 13 Feb 19 – Consultants
• 29 Jan 19 – Genomics England IQVIA agreement
• 21 Dec 17 – Number of results returned
• 25 July 17 – Data access, security and privacy
• 09 May 17 – Meetings with Google and 23andMe
• 05 June 17 – Finance System
• 03 March 16 – Tender for Interpretation Services
• 06 October 16 – Haemochromatosis
• 13 Nov 15 – Infrastructure spending