Haemochromatosis Genetig

13 May 2022

Dear

ATISN 16249 – Genetic haemochromatosis

Thank you for your request to the Welsh Government for information under the Freedom of Information Act (2000) received on 12 April 2022 regarding genetic haemochromatosis.  You have requested the following:

1. A copy of the documented literature review into genetic haemochromatosis (diagnosis rates) in Wales (as cited in para 2 of the letter), to include the names and authorities/qualifications of the literature review author(s) alongside the specific literature reviewed (citations) as well as the fully documented literature review
2. A copy of the “opinion sought from haematology consultants in South Wales”, alongside the initiating request for opinion/information that they were provided with in seeking their opinion
3. The names and qualifications/authorities of the haematology consultants who provided expert opinion, per point (2)

Response

1. A copy of the documented literature review is attached (Doc 1) 
2. You will note that some information captured within this document has been redacted and is exempt from disclosure under Section 40(2) – Personal Information of the Freedom of Information Act. The reasons for applying this exemption are set out in full in Annex 1.
3. Welsh Government officials sought the opinion from the Blood Health National Oversight Group (Doc 2) The membership of the Oversight Group including haematology consultants and can be found the Terms of Reference for the Group attached (Doc 3)
4. Welsh Government does not hold this information.

Next steps

If you are dissatisfied with the Welsh Government’s handling of your request, you can ask for an internal review within 40 working days of the date of this response.  Requests for an internal review should be addressed to the Welsh Government’s Freedom of Information Officer at:

Information Rights Unit, 
Welsh Government,
Cathays Park, 
Cardiff, 
CF10 3NQ 

or Email: Freedom.ofinformation@gov.wales

Please remember to quote the ATISN reference number above.   

You also have the right to complain to the Information Commissioner.  The Information Commissioner can be contacted at:  Information Commissioner’s Office,

Wycliffe House, 
Water Lane, 
Wilmslow, 
Cheshire, 
SK9 5AF.

However, please note that the Commissioner will not normally investigate a complaint until it has been through our own internal review process.

Yours sincerely

Annex 1

Section 40(2) – Personal Information

Section 40(2) of the Freedom of Information Act (FOIA) sets out an exemption from the right to know if the information requested is personal information of someone other than the requester and is protected by the Data Protection Act 2018 (DPA). 

Personal data is defined in Section 3(2) of the DPA as:

“Personal data” means any information relating to an identified or identifiable

living individual

We have concluded that, in this instance, names and contact details of Welsh Government staff and Welsh Government Library Service staff, amounts to the personal data of others than the person submitting the request.

Under Section 40(2) of the FOIA, personal data is exempt from release if disclosure would breach one of the data protection principles set out in Article 5 of the General Data Protection Regulations (GDPR).  We consider the principle being most relevant in this instance as being the first.

The first GPDR principle.

This states:

……..that personal data shall be:

a) processed lawfully, fairly and in a transparent manner in relation to individuals;

We consider that the information highlighted falls within the description of personal data as defined by the DPA and that its disclosure would breach the first data protection principle.

Guidance from the Information Commissioner’s Office (Personal information (section 40 and regulation 13) v 1.4) states:

If disclosure would not be fair, then the information is exempt from disclosure.

This approach was endorsed by the Court of Appeal in the case of Deborah Clark v the Information Commissioner and East Hertfordshire District Council where it was held:

“The first data protection principle entails a consideration of whether it would be fair to disclose the personal data in all the circumstances. The Commissioner determined that it would not be fair to disclose the requested information and thus the first data protection principle would be breached. (paragraph 63).

In this instance, we believe the data subjects have no expectation that their personal information would be made public. The members of staff whose details are withheld are grades below that of the Senior Civil service and therefore with no public profile. Thus, we believe release of this information would be unfair and so breach the first data protection principle. For that reason, the information is being withheld under section 40(2) of the Freedom of Information Act. This is an absolute exemption and not subject to the public interest tests.