Freedom of information publication scheme

Date Requested: 14 November 2025

Reference Number: DP-7928

Request:

Could you please provide answers and details pertaining to the following questions:

• Since inception, how many CF carrier testing (R185) tests have been requested via GP's / from the community?
• Since inception, how many hereditary haemochromatosis tests (R95) have been requested via GP's / from the community?
• Since inception, how many alpha-1 antitrypsin deficiency tests (R95) have been requested via GP's / from the community?
• How many medical doctors (of any staff grade or specialty) have undertaken a Genomics medicine PgCert/PgDip/MSc course funded by HEE?
• How many GP have undertaken a Genomics medicine PgCert/PgDip/MS course funded by HEE?

Our Response:

We do not hold any information which falls within the scope of this part of your request. We advise you contact NHS directly at https://www.england.nhs.uk/contact-us/foi

Date Requested: 14 June 2024

Request:

Under the Freedom of Information Act, I would like to request the following information:

1. Please can you provide information about the average length of time for the diagnostic odyssey stratified by NHS Trust (or closest equivalent) in England. This should be in years if possible.
2. Please can you provide information about the length of time for the diagnostic odyssey stratified by the original diagnosed disease prior to genomic testing. Broader diagnostic categories are also acceptable if the original request is too specific.

I would like you to provide the information in the following format: Excel (.xlsx) or as a data frame in a Rdat file.

Our Response:

We confirm that we don’t hold this information. The information may be held by NHS England. The email address to contact them is: [email protected]

We hope the above addresses your question, however, if you feel it does not you have the right to ask for an internal review. Internal review requests should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you are not content with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO

Date Requested: 14 July 2023

Our Response:

• Genomics England has three offices in London, Hinxton, and Leeds.
• We use our landlords’ internal suppliers (managed supply chain) for all hard and soft services, at all three locations.
• Total values of contracts granted are £102,199 for all three sites, and they run in line with the tenure of our leases.  All three were procured as part of the relevant lease negotiation.
• Contracts expiry; London - Nov 2023, Leeds - Sept 2023; Hinxton - July 2025

We hope the above addresses your request, however, if you feel it does not, you have the right to ask for an internal review. Internal review requests should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you are not content with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO.

Reference Number: DP-5470

Request:

We are writing regarding the Genomics England projects. In order to ensure global privacy of sensitive genetic information, we are seeking clarification on your data sharing policies

1. We note that the project involves industry partners. We thus seek clarification on who else may register for data access, if this includes additional law enforcement or immigration services.
2. We further seek clarification on what privacy protections are in place to prevent access to identifiable genetic information (including re-identifiable) in the hands of the project and third parties, by law enforcement and immigration services, including what policies are in place to prevent and monitor data breaches by your organisation or third party collaborators.
3. We note that your website says that participants and researchers should be made aware of and breaches, and thus request information on any known breaches to have taken place already.
4. We note that withdrawal forms state that access to data and samples for research use will be stopped following withdrawal, but we seek clarification on whether data already transferred to third parties can continue to be used.

Our Response:

Part 1

Information around access to genomic information can be found here – Joining our research community | Genomics England

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.

Part 2

Direct identifiers, such as name and date of birth, are held in a separate part of the data infrastructure. This part of the data infrastructure is more secure, in the sense that it is not accessible to researchers; nor, indeed, is it be accessible to the majority of Genomics England staff. Given the sensitive nature of the health and genome data, similar expectations of security apply across the whole of the data infrastructure.

In the rare cases where Genomics England staff need access to identifiable data, access is only granted following explicit approval from Genomics England’s Senior Information Risk Owner (SIRO). Access to identifiable data is strictly limited and protected.

Genomics England has a suite of policies designed to address data protection and data security within the organisation. These policies include:

• Data Protection Policy
• Data Security and Data Breach Policy

Part 3

Genomics England has not had any breaches requiring the need to inform affected individuals (participants or researchers included).

Part 4

Genomics England does not transfer personal data to third parties. Our research environment operates as a reading library where de-identified personal data cannot be removed or downloaded. To protect patient data, access to the research environment is controlled and secure, and only results of analysis can be exported.

Date Requested: 20 June 2023

Request:

Please can you provide detail regarding training costs for genomic clinical scientists.

1. How much does it cost to train a new registered clinical scientist in genomics via the STP (Scientist Training Program) route? Please provide per trainee cost and total cost for all STP trainees in the last financial year.
2. How much funding is provided by Genomics England to host laboratories for the training of new registered clinical scientists in genomics via ACS Route 2 (in post training) or STP equivalent route. Please provide per trainee cost and total cost for all trainees on this route in the last financial year.

In both questions I anticipate this including but not being limited to the cost of wages and training allowance across the duration of each program/course as well as the cost of associated MSc education and travel/training resources.

Our Response:

No training costs have been incurred by Genomics England.

Genomics England has provided no funding to host laboratories, but has provided training opportunities through short term unfunded internships.

We hope the above addresses your question, however, if you feel it does not you have the right to ask for an internal review. Internal review requests should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you are not content with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO

Date Requested: 11 April 2023

Reference Number: DP-7036

Request:

I have seen 2022 news reports indicating the UK Newborn Genomes Programme will sequence the genomes of 100,000 and/or 200,000 babies, respectively. The correct number is 100,000, right? Was it initially 200,000 and then changed at some point to 100,000? (If so, when was that change made?)

Our Response:

As announced in the Spending Review statement of September 2020 and set out in more detail – including the specific funding commitment – by the Department of Health and Social Care in December 2021, the programme has been funded to sequence 100,000 babies’ genomes in this government spending period.

The number of babies genomes will need to be sequenced through the study is determined by sample size calculations looking at the number of participants required to accurately estimate the clinical utility of newborn genome sequencing. At the time of the funding announcements, based on our early design scope, the calculations indicated a sample size of 200,000 may be needed, meaning that recruitment may have needed to extend into future government spending periods.

As we have refined our design, we have carried out updated calculations and believe that that the number of babies required is closer to 100,000. We will update our calculations ahead of launch once the list of conditions looked for is finalised and during the study as we get more real world data on the frequency of these conditions. This may further adjust this figure.

Date Requested: 20th February 2023

Reference Number: DP-7028

Request:

Please provide a list of any and all contact your organisation and/or staff have had with British American Tobacco, Imperial Brands, Japan Tobacco International, Philip Morris International, as well as any other domestic or transnational tobacco companies or anyone representing the tobacco industry including subsidiaries of tobacco industry.

I would like this information for the period from 1 April 2021 to 20 February 2023.

Contact would primarily include attending or arranging meetings or functions and responding to correspondence or phone calls.

Please break down the information by:

• Tobacco company or representative’s name
• Date of contact(s)
• Type of contact (meeting, email, letter, phone call, text/app message or video call, e-card or any other form of electronic communication)
• Place of contact, if relevant
• Purpose of contact
• Outcome of contact, including if no action taken

I request that the information be provided electronically. I would be grateful if you could confirm in writing that you have received this request.

Our Response:

We have not found any records of contact with or approaches by any of the listed tobacco companies.

We hope the above addresses your request, however, if you feel it doesn’t, you have the right to ask for an internal review. Requests for internal review should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you aren’t satisfied with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO

Date Requested: 16th March 2023

Our Reference: DP-7028

Request

Please provide me with the following information:

1. How many genomes has Illumina sequenced under the agreement announced in 2020 to sequence up to 300,000 whole genomes over 5 years?
   1. Please provide a breakdown by year, i.e. giving numbers for 2020, 2021 and 2022.
   2. This is the relevant agreement: https://www.genomicsengland.co.uk/news/genomics-england-and-illumina-sequence-whole-genomes-for-nhs-gms
2. How much has Genomics England paid Illumina for the sequencing work above. Please give a breakdown by year for 2020, 2021 and 2022.
3. How many genomes has Illumina sequenced for Genomics England that were not covered by the agreement above. Please give a breakdown for 2020, 2021, 2022.
4. How much has Genomics England paid Illumina for the sequencing work outside that covered by the agreement linked to above. Please give a breakdown by year for 2020, 2021 and 2022.

Our Response:

The responses to Question 2 are subject to exemption under Section 43 (2) of the Freedom of Information Act 2000 in that disclosure would, or would likely to, prejudice the commercial interests of Genomics England and Illumina. A Section 43(2) exemption is qualified in that information can only be withheld if the public interest test set out in Section 43 (2)(2) of the FOIA, in maintaining the exemption, outweighs the public interest in disclosure. We have referred to Schedule 7 of the contract between Genomics England and Illumina to consider the following factors when applying the public interest test to this exemption:

Does this information related to, or could it impact on a commercial activity?

Yes, the commercial activities of Genomics England and Illumina could be compromised if the activity-related costs were disclosed as it would affect their ability to negotiate contracts with other third parties.

Would there be damage to reputation or business confidence?

Yes, it is important that Genomics England maintains confidential contractual relations with its commercial suppliers to ensure trust and confidence in it as a contracting party.

Whose commercial interests are affected?

Genomics England’s and Illumina’s.

Is the information commercially sensitive?

Yes, activity costs are subject to market conditions.

What is the likelihood of prejudice being caused?

High, in that disclosure would damage Genomics England’s or Illumina’s ability to negotiate a contract with other sequencing partners.

The public interest applies. In relation to the public interest test the following have been recorded:

• Public interest factors in favour of disclosure
• Public interest factors in favour of maintaining the exemption
• The outcome of the public interest test.

The exemption can only be upheld if the public interest in maintaining the exemption outweighs the public interest in disclosure.

There is inherent public interest in ensuring that there is openness and transparency in the spending of public money. Transparency is likely to increase confidence in procedures and decisions made by Genomics England.

Factors in favour of maintaining the exemption:

Disclosure would damage Genomics England’s future ability to negotiate contracts competitively.

Genomics England must ensure that its business activities are confidential to maintain business confidence from those it contracts with.

The factors against disclosure outweigh the factors for disclosure. As the public interest test is met, the exemption applies and some sections within the contract have been redacted.

We hope the above addresses your request, however, if you feel it doesn’t, you have the right to ask for an internal review. Requests for internal review should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you aren’t satisfied with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at:Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO

Date Requested: 28 January 2023

Our Reference: DP-7701

Request

I would like to request an internal review of the response. I specifically asked for a separate summary for your executive team leadership - a similar FOI has previously been responded to for your ELT and the information was provided, including where this couldn’t be provided (ie where an ELT member was seconded). The information in the previous FOI response also included the band that the highest paid member of staff was in (i.e. an upper and lower indication) and not an open-end sum as in this response.

Our Response:

We have reviewed our response with our Data Protection Officer and are comfortable to confirm the salaries of the ELT members in £10k salary bandings as follows:

We believe our response is proportionate and appropriate. Genomics England will consider the release of this type of information in a measured way, by way of adoption of a publication scheme.

However, where disclosure is based on the private interests of the requestor, and there is no general expectation of publication then it would not be reasonable to publish in full. Exceptional circumstances would be needed to justify the disclosure of exact salaries when we don’t routinely publish them, with the exception of the CEO.

S 40(2) Personal information

Information redacted is subject to exemption under Section 40 (2) of the Freedom of Information Act 2000 in that the requested information is the personal data of someone other than the requester. Disclosing this information would contravene the data protection principles in Schedule 1 to the Data Protection Act 1998 (DPA). The information contains names of individuals who are not senior employees.

S 41 Confidentiality

Information redacted is subject to exemption under Section 41 of the Freedom of Information Act 2000 in that the requested information is the personal data of someone other than the requester and was provided to Genomics England in confidence.

If you are not content with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO

Date Requested: 6th January 2023

Reference Number: DP-7014

Request:

1. A list of all the international trips taken by each Executive Leadership team member for the whole year of 2022 (starting 01/01/2022 and ending 31/12/2022). For air and rail trips, please clearly state the travel class for each trip.
2. An itemised list of expenses for each trip (including but not limited to airplane tickets, hotel expenses, taxi costs, rail tickets and subsistence claims, conference attendance fees etc) for the whole year of 2022.
3. Also include the names of the air travel providers (eg. EasyJet, British Airways) for each expenses claim, and, the points of departure and arrival.
4. Also include any attempted claims for air travel expenses and subsistence claims made by each Executive Leadership team member during the time-frame above that were refused - and please include the recorded reason for refusal.
5. Include all hospitality received on such trips.
6. Provide recorded information on trip rationale, the aims of the trip and references to office reports/internal emails.

Our Response:

We have relied on the following exemption in the Freedom of Information Act 2000 to refuse this request:

S 12 – Exemption due to cost of complying

Complying with your request would exceed the appropriate cost limit.

We confirm that we hold the information and have provided the following summary of travel costs:

For the financial year 2021/22 a total of £23,000 was spent on travel. This includes all costs and mileage for business travel within the UK and overseas travel for all Genomics England employees.

We hope the above addresses your request, however, if you feel it doesn’t, you have the right to ask for an internal review. Requests for internal review should be submitted within two months of the date of receipt of our response and should be addressed to our Data Protection Officer at [email protected]. Please kindly remember to quote the reference number above in any future communications.

If you aren’t satisfied with the outcome of the internal review, you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: Information Commissioner's Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF or Official information concern | ICO