Privacy statement - Employees and contractors


The Huntington’s Disease Association takes the privacy of our contractors and employees very seriously. We are committed to protecting and keeping any personal data you share with us, or we get from other organisations, safe.

The Huntington’s Disease Association is subject to General Data Protection Regulation and the Data Protection Act 2018. We are registered with the Information Commissioners Office as a Data Controller (registration number: ZA233740).

This employee and contractor privacy statement explains what personal information we will hold about you, how we collect it, how we will store it and how we will use it. We will not share your personal information with third parties and other organisations unless you give us prior agreement to do so. Most importantly, this statement will make clear to you your rights regarding the use of your personal information by the Huntington's Disease Association.

Please ensure that you read this privacy notice and any other similar notice we may provide to you and contact us if you have any questions about the data we collect and hold about you on [email protected] or 0151 331 5444.


Data protection principles

The Huntington’s Disease Association complies fully with the data protection principles when gathering and using personal information, these principles are set out within our Data Protection Policy.


Legal basis for using your information

In accordance with General Data Protection Regulation, the lawful reasons we use to process your information if you are employed or contracted by the Huntington’s Disease Association is ‘contract’.

We process your personal information to fulfil the obligations of the contract of employment or service provision agreement in place with you as an employee or contractor working for the Huntington’s Disease Association.


How we collect information

We will only collect information from you that is necessary for your role or the services you provide to the charity and for future monitoring and evaluation purposes. Where information is stored for monitoring and evaluation purposes we will ensure that it is anonymised at the earliest possible stage in accordance with our data protection policies.

If in the future, we would like to use your information for another purpose, or the reason for using your personal information has changed we will ask your permission before doing so.

Directly from you
We obtain personal information when you give it to us directly, during the recruitment and selection process and during the time you work for the Huntington’s Disease Association.

Other organisations and third parties
We may obtain information about your from third party organisations such as Disclosure and Barring Service or from people you name as referees for your role.


What information do we collect and hold

As an employer, the Huntington’s Disease Association collects and holds information about its employees and contractors for normal employment purposes such as management and administration. This may include:

  • Name
  • Date of birth
  • Email address
  • Postal address
  • Telephone number
  • National insurance number
  • D document copies
  • Bank or building society details
  • Payroll and pension information
  • Next of kin name and contact details
  • Qualifications
  • Medical history and sickness absence history
  • Employment history and details of previous employment
  • References
  • Performance and disciplinary records
  • Criminal records history
  • Period of employment / contract
  • Declared conflicts of interest and loyalty
  • Records of complaints
  • Health and safety records (including accident reports, medical conditions)
  • Photograph (for staff profile, website and I.D badge)
  • Location (Personal safety devices and mobile phones used by staff have location tracking available used in emergency situations for health and safety purposes and to track lost devices)
  • Information needed for equal opportunities monitoring
  • Contract of employment / service level agreement
  • Correspondence with you e.g. letters about your role / services you provide

We will use this information to do the following as relevant:

  • To fulfil our responsibilities to you under your contract of employment / service level agreement
  • To comply with legal requirements, such as the health and safety at work legislation
  • To pursue our legitimate business interests
  • To perform our rights and obligations related to your role
  • To contact your emergency contact, where necessary and appropriate

The Huntington’s Disease Association may wish to publish information about you for other purposes, such as on our website for marketing purposes. In these cases where this is not already covered within your obligations under your contract of employment, we will only do so with your consent.


How we keep your personal information safe

We make sure that your information is accessed only by appropriately trained staff and approved contractors. We ensure that any external contractors we use are comprehensively checked and adhere to a formal agreement in which our expectations and requirements regarding the way in which they manage, collect and access any personal data, are met.

We make sure that there are relevant controls in place on our website and on our data networks to safeguard your personal details. All of our online forms are protected by encryption. We also use a secure server so that financial information is protected. 

We take appropriate measures to ensure that any personal information you disclose to us is kept secure, accurate and up to date. We have appropriate security measures in place to prevent personal information from being accidentally lost, used or accessed in an unauthorised way. We limit access to your personal information to those who have a genuine business need to know it. Those processing your information will do so only in an authorised manner and are subject to a duty of confidentiality.

We will only disclose data when obliged to disclose personal data by law, or the disclosure is 'necessary' for purposes of national security, taxation and criminal investigation, or if we have your consent.


How long do we keep your information

We ensure that your personal information is kept only for so long as is necessary and for the purposes for which it was collected.

Retention periods for all data we hold are detailed in our data retention and destruction schedule which is reviewed annually and secure information destruction processes implemented where relevant.


Accessing your information

You have the right to find out what information we hold about you, how this information is used and how long your data is kept. You also have a right to request a copy of the information that we hold about you. If you would like further information or you would like a copy of the information we hold, please contact us via telephone on 0151 331 5444, by email [email protected], or write to us at Huntington’s Disease Association, Suite 24, Liverpool Science Park, IC1, 131 Mount Pleasant, Liverpool, L3 5TF.

We want to make sure your information is up to date, so please contact us to ask us to correct it if it needs updating.

If you are unhappy about how we handle your personal information, you can contact the Information Commissioner’s Office. For further information please visit the Information Commissioner’s website or call 0303 123 1113.