Privacy of DNA data on PCR swabs

Summary

The requester asked Manx Care about the disposal of COVID PCR samples, legislation preventing their sale, and privacy policies. Manx Care confirmed that extracted RNA is destroyed within a week, primary samples are kept for less than a month, and they will never sell biological samples to third parties.

Key Facts

• Extracted COVID RNA is destroyed by incineration as clinical waste within a week.
• Primary samples are retained for less than a month, or as long as clinically required.
• Manx Care assures they will never sell biological samples to a third party.
• Samples may be shared with PHE Colindale for COVID sequencing purposes.
• Manx Care follows The Royal College of Pathologists guidelines on specimen retention.

Data Disclosed

• 2021-11-29
• 2021-12-24
• 2115993
• one week
• less than a month

Original Request

An article in the Telegraph https://www.telegraph.co.uk/news/2021/11/14/covid-test-firm-sell-swabs-carrying-customers-dna/ reveals that a company carrying out tests in the UK is planning to sell the swabs it has kept, containing DNA data. 1. Please would you confirm what has happened to the samples and associated DNA taken for covid PCR analysis on the Island? Have they been kept or disposed of or shared? 2. Is there any legislation preventing the biological samples being sold / shared in the future? And if not, will the department give assurance that this will never happen? 3. Please could you direct me to the privacy policy and consent form, advising people of what happens to their DNA data when taking a PCR test? Thanks".

Data Tables (1)

Full Response Text

Manx Care Noble’s Hospital, Strang Braddan, Isle of Man IM4 4R (01624) 650 000

Our ref: 2115993 24th December 2021

Dear ###

We write further to your request which was received on 29th November 2021 which states:

"An article in the Telegraph https://www.telegraph.co.uk/news/2021/11/14/covid-test-firm- sell-swabs-carrying-customers-dna/ reveals that a company carrying out tests in the UK is planning to sell the swabs it has kept, containing DNA data. 1. Please would you confirm what has happened to the samples and associated DNA taken for covid PCR analysis on the Island? Have they been kept or disposed of or shared? 2. Is there any legislation preventing the biological samples being sold / shared in the future? And if not, will the department give assurance that this will never happen? 3. Please could you direct me to the privacy policy and consent form, advising people of what happens to their DNA data when taking a PCR test? Thanks"."

Our Response

1. Please would you confirm what has happened to the samples and associated DNA taken for covid PCR analysis on the Island? Have they been kept or disposed of or shared? COVID RNA isn’t stored - extracted RNA is destroyed by incineration as clinical waste within a week as it is no longer clinically viable. Primary samples are kept as long as clinically required, but typically less than a month. 2. Is there any legislation preventing the biological samples being sold / shared in the future? And if not, will the department give assurance that this will never happen? Manx Care do not sell biological samples and our Pathology Department can assure that we will never sell to a third party although we may share samples with PHE Colindale for Covid sequencing. Our information rights legislative framework is based on European and National best practice standards and best practice to safeguard individual rights and fundamental freedoms. We continually monitor and update legislative frameworks and when required implement proportionate policy and legislation.

3. Please could you direct me to the privacy policy and consent form, advising people of what happens to their DNA data when taking a PCR test? We follow The Royal College of Pathologists guidelines on retention of specimens: www.rcpath.org/The-retention-and-storage-of-pathological-records-and-specimens-5th- edition.pdf Please quote the reference number 2115993 in any future communications.

Your right to request a review

If you are unhappy with this response to your freedom of information request, you may ask us to carry out an internal review of the response, by completing a complaint form and submitting it electronically or by delivery/post.

An electronic version of our complaint form can be found by going to our website at https://services.gov.im/freedom-of-information/Review . If you would like a paper version of our complaint form to be sent to you by post, please contact me and I will be happy to arrange for this. Your review request should explain why you are dissatisfied with this response, and should be made as soon as practicable. We will respond as soon as the review has been concluded.

If you are not satisfied with the result of the review, you then have the right to appeal to the Information Commissioner for a decision on; 1. Whether we have responded to your request for information in accordance with Part 2 of the Freedom of Information Act 2015; or 2. Whether we are justified in refusing to give you the information requested.
In response to an application for review, the Information Commissioner may, at any time, attempt to resolve a matter by negotiation, conciliation, mediation or another form of alternative dispute resolution and will have regard to any outcome of this in making any subsequent decision. More detailed information on your right to a review can be found on the Information Commissioner’s website at www.inforights.im. Should you have any queries concerning this letter, please do not hesitate to contact me. Further information about freedom of information requests can be found at www.gov.im/foi.

I will now close your request as of this date.