How is our family’s privacy protected after the umbilical cord blood unit is used for a transplant?

Body

We always keep the mother’s name confidential and protect you and your family’s privacy. Names are never shared with any patient or transplant centre.

As the cord blood unit is identified only by number, you and the transplant patient will also not be able to exchange any personal information.

Is my personal information, including my test results, kept confidential?

Body

Yes. All personal data shall be held and processed in accordance with the Data Protection Act (2018) and the General Data Protection Regulation ((EU) 2016/679) and we only collect data that is required for the purposes of the cord blood programme. If suitable for transplant the cord blood and donor eligibility details will be listed on national and international registries. We require your permission to review your maternity records to gather demographic and health data. You have a right to see your own health records and correct information held about you.

Your details are safe with us. We promise to protect and respect your privacy. Please refer to our Privacy policy for more information about how we process your data. You can update your preferences at any time by emailing cord.collection@anthonynolan.org

Who can legally collect (procure) cord blood and what are the consequences of unlawful procurement?

Body

In the UK, procurement of human tissues and cells which may be used for treatment (including cord blood) must occur on Human Tissue Authority (HTA)-licensed premises or under a third-party agreement (TPA).

In the latter case:

  • The individual doing the collection must be procuring cord blood on behalf of an HTA-licensed establishment; and the TPA must meet the requirements set out in the HTA’s Guide to quality and safety assurance of human tissues and cells for patient treatments
  • The individual doing the collection must be a healthcare professional who has (a) completed training to the approval of the Designated Individual named on a cord blood establishment’s HTA licence, and (b) has entered into an individual TPA with a HTA-licensed cord blood establishment; or by a healthcare professional who has (a) completed training to the approval of the Designated Individual named on a cord blood establishment’s HTA licence, and (b) is working for a hospital who holds a TPA with a HTA-licensed establishment.

Training ensures that the person collecting the cord blood is competent to undertake cord blood collection. Training will ensure that the risk of physical harm to the mother and child during the cord blood collection is minimised; and, that processes are followed to reduce the possibility of the cord blood being contaminated during collection.

The patient’s partner may only collect cord blood if they themselves are a registered healthcare professional who has been specifically trained in cord blood collection.

Procurement that does not meet the conditions laid out above is unlawful and can result in action being taken against both the individual and hospital by the HTA under Human Tissue (Quality and Safety for Human Application) Regulations 2007.

Anthony Nolan only uses specifically-trained midwives and dedicated collectors to collect cord blood from donating mothers.

Subscribe to