Storage, use and ownership of Newborn Metabolic Screening data and materials

Rachael made this Freedom of Information request to Alder Hey Children’s NHS Foundation Trust

This request has been closed to new correspondence from the public body. Contact us if you think it ought be re-opened.

The request was refused by Alder Hey Children’s NHS Foundation Trust.

Dear Alder Hey Children’s NHS Foundation Trust,

I am making this request under the Freedom of Information Act and request answers to the following;

1) Has whole genome or whole exome sequencing been used at any point before, after or during initial screening for the 9 diseases for my daughter NHS no. 713 229 2811

2) Who has legal ownership of the physical card, the spot of blood and associated blood products, and the laboratory reports and who is able to access it and use it?

3) Where is it stored , 'offsite in a sealed facility' is not an answer. Location, company name , business number ?

4) Has my daughters genetic material and information extracted from it, physical blood spot and associated blood products been subjected to labour that would deem it res nullius or could this come to pass.

5) Has my daughters genetic material and information extracted from it, physical blood spot and associated blood products entered or are scheduled to enter a BIOBANK or similar facility that qualifies for non human subjects research as determined by the UK equivalent of the local IRB and the federal office of Human Research Protections such as BIO VU, the Vanderbilt DNA database. If not, could this come to pass also.

6) Can a moratorium (embargo) be imposed for an indefinite period of time meaning the cards can also be stored indefinitely and longer than the stated 5 years?

Dr Paul Newland Clinical Director of Pathology, Alder hey writes that unfortunately he cannot release the card to me due to a:
“moratorium (embargo) under the use of screening cards and their release, so at present the mother will not be able to be given this until the moratorium is removed. Please reassure her that we do not undertake research on cards currently, and it is not something we see happening for some time. In the absence of the moratorium we keep cards for 5 years and then they are destroyed.  In the meantime, I will get the card out of storage and place no research or further tests to be conducted on it, and restore"

These are both trade terms which are largely related to goods and commerce. How very strange to use this language in a public health matter, it most certainly gives the impression that this is a business, with genetic material being the goods. How are these goods being traded we must wonder, what is the value of these goods and who indeed is buying and selling what is extracted.

As I did not give informed consent and this is therefore an illegal practice relying on the ignorance of the public, I publicly withdraw consent of all storage of the card and information arising from it and the blood spot. I withdraw consent for research of any kind or use of my child's genetic material for any purpose. Thus far I have been refused.

This practice is in violation of democracy and my child's human rights as she has not consented to her genetic material and information extracted from it to be property of an unknown entity or used, analysed or stored in any way. My child's genetic privacy has been refused past, present and future.

Am I to accept that my child's genetic material is now the property of an external entity that I am being denied any knowledge of and I can do nothing about this?

Yours faithfully,
Rachael Brown

Whittaker Alex, Alder Hey Children’s NHS Foundation Trust

Dear Ms. Brown,

Thank you for your below communication.

The Trust cannot respond to your below queries under the terms of the Freedom of Information Act 2000.

The Trust would like to pass your queries/ concerns onto the Patient Advice & Liaison Service. Please send me direct contact details for yourself if you would like me to send it onto the PALS Team.

Alternatively please contact the PALS Team via email using [email address] or by telephone using 0151 252 5161/ 5374.

Kind Regards

Information Governance Team
Alder Hey Children's NHS Foundation Trust
Ext: 2158
Direct Dial: 0151 252 5158
[email address]

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