1.1. Background to the General Data Protection Regulation (‘GDPR’) and related data protection legislation.
The General Data Protection Regulation 2016 replaced the EU Data Protection Directive of 1995 and superseded the laws of individual Member States that were developed in compliance with the Data Protection Directive 95/46/EC. Its purpose is to protect the “rights and freedoms” of natural persons (i.e. living individuals) and to ensure that personal data is not processed without their knowledge, and, wherever possible, that it is processed with their consent.
The Privacy and Electronic Communications Regulations (PECR) sit alongside the Data Protection Act and the UK GDPR, give people specific privacy rights in relation to electronic communications, including marketing-related electronic communications and phone calls, and website cookies (and similar technologies). They aim, among other things, is to ensure that before an organisation sends an individual unsolicited e-marketing it has obtained “consent” that is “knowingly and freely given, clear and specific”, and that covers the type of communication that will be used and that requires performing a “very clear positive action” (eg, an opt-in tick box) in order to confirm that consent and understanding.
1.2. Definitions used (mainly drawn from the GDPR)
Material scope (Article 2) – the GDPR applies to the processing of personal data wholly or partly by automated means (i.e. by computer) and to the processing other than by automated means of personal data (i.e. paper records) that form part of a filing system or are intended to form part of a filing system.
Territorial scope (Article 3) – the GDPR applies to all controllers that are established in the EU (European Union) and European Economic Area (EEA), and who process the personal data of data subjects, in the context of that establishment. Since the UK’s departure from the EU at the end of 2020, GDPR has continued to apply in the UK for a transition period until June 2021. On 28 June 2021, the EU approved adequacy decisions for the EU GDPR and its application in the UK. This means the EU views UK GDPR as having an “essentially equivalent” level of data protection to the EU, so that data can continue to flow as it did before between the UK and the EU, in the majority of circumstances (with the exception being in relation to immigration control, which does not fall into the remit of the DKMS’ work). The adequacy decisions are expected to last until 27 June 2025, and the General Data Protection Regulation has been kept in UK law as the UK GDPR.
Establishment – the main establishment of the Data controller in the EU is the place in which they make the main decisions as to the purpose and means of its data processing activities, e.g. head office.
Personal data – any information relating to an identified or identifiable natural person ('data subject'); an identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as a name, an identification number, location data, an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person.
Special categories of personal data – personal data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade-union membership, and the processing of genetic data, biometric data for the purpose of uniquely identifying a natural person, data concerning health or data concerning a natural person's sex life or sexual orientation.
Data controller – The legal entity who determines the purposes and means of the processing of personal data, i.e. the charity. Referred to as ‘controller’ in this document.
Data processor – Any organization processing data on behalf of a Data Controller.
Data subject – any living individual who is the subject of personal data held by an organisation.
Processing – any operation or set of operations which is performed on personal data or on sets of personal data, whether or not by automated means, such as collection, recording, organisation, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.
Profiling – is any form of automated processing of personal data intended to evaluate certain personal aspects relating to a natural person, or to analyse or predict that person’s performance at work, economic situation, location, health, personal preferences, reliability, or behavior. This definition is linked to the right of the data subject to object to profiling and a right to be informed about the existence of profiling, of measures based on profiling and the envisaged effects of profiling on the individual.
Personal data breach – a breach of security leading to the accidental, or unlawful, destruction, loss, alteration, unauthorised disclosure of, or access to, personal data transmitted, stored or otherwise processed. There is an obligation on the controller to report personal data breaches to the supervisory authority and where the breach is likely to adversely affect the personal data or privacy of the data subject.
Data subject consent – means any freely given, specific, informed and unambiguous indication of the data subject's wishes by which he or she, by a statement or by a clear affirmative action, signifies agreement to the processing of personal data.
Child – the GDPR defines a child as anyone under the age of 16 years old, although this may be lowered to 13 by Member State law. The processing of personal data of a child is only lawful if parental or custodian consent has been obtained. The controller shall make reasonable efforts to verify in such cases that consent is given or authorised by the holder of parental responsibility over the child.
Third party – a natural or legal person, public authority, agency or body other than the data subject, controller, processor and persons who, under the direct authority of the controller or processor, are authorised to process personal data.
Filing system – any structured set of personal data which are accessible according to specific criteria, whether centralised, decentralised or dispersed on a functional or geographical basis.
ICO – Information Commissioner’s Office – The organization responsible for the enforcement of GDPR and where data breaches are reported.
2.1. The Trustees and management of DKMS UK are committed to compliance with all relevant law in respect of personal data, and the protection of the “rights and freedoms” of individuals whose information DKMS UK collects and processes in accordance with the General Data Protection Regulation (GDPR).
2.2. Compliance with the GDPR is described by this policy and other relevant policies such as the Information Security Policy along with connected processes and procedures.
2.3. The GDPR and this policy apply to all personal data processing functions, including those performed on beneficiaries’, volunteers’, staff’s, suppliers’ and partners’ personal data, and any other personal data the organisation processes from any source.
2.4. The Data Protection Officer is responsible for reviewing the register of processing annually in the light of any changes to activities and to any additional requirements identified by means of data protection impact assessments. This register will be available on the ICO’s request.
2.5. This policy applies to all those doing work for DKMS UK, including staff, volunteers, and suppliers. Any breach of the GDPR or this Policy may be dealt with under the disciplinary policy.
2.6. No third party may access personal data held by DKMS UK without having first entered into a data confidentiality agreement, which imposes on the third party obligations no less onerous than those to which DKMS UK is committed, and which gives the right to audit compliance with the agreement.
3.1. DKMS UK is a Data Controller under the GDPR. DKMS Registry gGmbH (Kressbach 1, 72072, Tübingen, Germany) is also a joint controller of DKMS UK’s personal data relating to blood stem cell donor recruitment, registration and collection.
3.2. The Trustees and the Senior Leadership Team are responsible for the implementation and maintenance of effective policy and process to ensure compliance with the GDPR.
3.3. The Data Protection Officer, a role specified in the GDPR, is a member of Senior Leadership Team, is accountable to the Trustees for the management of personal data and for ensuring that compliance with data protection legislation and good practice can be demonstrated. This accountability includes:
3.3.1. Development and implementation of the GDPR as required by this policy,
3.3.2. Information security and risk management in relation to compliance with the policy.
3.4. The Data Protection Officer has specific responsibilities in respect of procedures such as the Subject Access Request Procedure and is the first point of call for Staff and Volunteers seeking clarification on any aspect of data protection compliance.
3.5. Compliance with data protection legislation is the responsibility of all Staff and Volunteers of the charity.
3.6. Staff will receive training in data protection, and use of personal data on appointment and update training annually. Volunteers will receive annual briefings.
3.7. Staff and volunteers are responsible for ensuring that any personal data about them and supplied by them to the charity is accurate and up-to-date.
All processing of personal data must be conducted in accordance with the data protection principles as set out in Article 5 of the GDPR.
4.1. Personal data must be processed lawfully, fairly and transparently
The GDPR has increased requirements about what information should be available to data subjects, which is covered in the ‘Transparency’ requirement.
The specific information that must be provided to the data subject must, as a minimum, include:
4.1.1. the identity and the contact details of the controller and, if any, of the controller's representative;
4.1.2. the contact details of the Data Protection Officer;
4.1.3. the purposes of the processing for which the personal data are intended as well as the legal basis for the processing;
4.1.4. the period for which the personal data will be stored;
4.1.5. the existence of the rights to request access, rectification, erasure or to object to the processing, and the conditions (or lack of) relating to exercising these rights, such as whether the lawfulness of previous processing will be affected;
4.1.6. the categories of personal data concerned;
4.1.7. the recipients or categories of recipients of the personal data, where applicable;
4.1.8. where applicable, that the controller intends to transfer personal data to a recipient in a third country and the level of protection afforded to the data;
4.1.9. any further information necessary to guarantee fair processing.
4.2. Personal data can only be collected for specific, explicit and legitimate purposes
Data obtained for specified purposes must not be used for a purpose that differs from those formally notified to the supervisory authority as part of the charity’s GDPR register of processing.
4.3. Personal data must be adequate, relevant and limited to what is necessary for processing
4.3.1. The Data Protection Officer is responsible for ensuring that DKMS UK does not collect information that is not strictly necessary for the purpose for which it is obtained.
4.3.2. All data collection forms (electronic or paper-based), including data collection requirements in new information systems, must include a fair processing statement or link to a privacy statement and be approved by the Data Protection Officer.
4.3.3. The Data Protection Officer will ensure that, on an annual basis all data collection methods are reviewed by internal audit to ensure that collected data continues to be adequate, relevant and not excessive, using the Data Processing Impact Assessment Procedure
4.4. Personal data must be accurate and kept up to date with every effort to erase or rectify without delay
4.4.1. Data that is stored by the data controller must be reviewed and updated as necessary. No data should be kept unless it is reasonable to assume that it is accurate.
4.4.2. The Data Protection Officer is responsible for ensuring that all staff are trained in the importance of collecting accurate data and maintaining it.
4.4.3. It is also the responsibility of the data subject to ensure that data held by DKMS UK is accurate and up to date. Completion of a registration or application form by a data subject will include a statement that the data contained therein is accurate at the date of submission.
4.4.4. Staff and Volunteers are required to notify the charity of any changes in circumstance to enable personal records to be updated accordingly, using the Record of Data Processing procedure.
4.4.5. The Data Protection Officer is responsible for ensuring that appropriate procedures and policies are in place to keep personal data accurate and up to date, taking into account the volume of data collected, the speed with which it might change and any other relevant factors.
4.4.6. On at least an annual basis, the Data Protection Officer will review the retention dates of all the personal data processed by the charity by reference to the data inventory, and will identify any data that is no longer required in the context of the registered purpose. This data will be deleted.
4.4.7. The Data Protection Officer is responsible for responding to requests for rectification from data subjects within one month as per the Subject Access Request Procedure. This can be extended to a further two months for complex requests. If DKMS UK decides not to comply with the request, the Data Protection Officer must respond to the data subject to explain its reasoning and inform them of their right to complain to the supervisory authority and seek judicial remedy.
4.4.8. The Data Protection Officer is responsible for making appropriate arrangements that, where third-party organisations may have been passed inaccurate or out-of-date personal data, to inform them that the information is inaccurate and/or out of date and is not to be used to inform decisions about the individuals concerned; and for passing any correction to the personal data to the third party where this is required.
4.5. Personal data must be kept in a form such that the data subject can be identified only as long as is necessary for processing.
4.5.1. Where personal data is retained beyond the retention date for a legitimate business reason, it will be minimised or pseudonymised in order to protect the identity of the data subject in the event of a data breach.
4.5.2. Personal data will be retained in line with the Retention of Records Procedure and, once its retention date is passed, it must be securely destroyed.
4.5.3. The Data Protection Officer must specifically approve any data retention that exceeds the retention periods defined in Retention of Records Procedure, and must ensure that the justification is clearly identified and in line with the requirements of the data protection legislation. This approval must be written.
4.6. Personal data must be processed in a manner that ensures the appropriate security
The Data Protection Officer will carry out a risk assessment, using the DPIA procedure, taking into account all the circumstances of the charity’s controlling or processing operations.
In determining appropriateness, the Data Protection Officer should also consider the extent of possible damage or loss that might be caused to individuals (e.g. staff or beneficiaries) if a security breach occurs, the effect of any security breach on the charity, and any likely reputational damage including the possible loss of public trust.
Technical and organizational measures are required to achieve appropriate security. Technical security will be assured by the achievement of suitable externally verified security certifications.
Organisational measures include the following:
These controls have been selected on the basis of identified risks to personal data, and the potential for damage or distress to individuals whose data is being processed.
4.7. The controller must be able to demonstrate compliance with the GDPR’s other principles (accountability)
The GDPR includes provisions that promote accountability and governance. These complement the GDPR’s transparency requirements. The accountability principle in Article 5(2) requires you to demonstrate that you comply with the principles and states explicitly that this is your responsibility.
DKMS UK demonstrates compliance with the data protection principles by implementing data protection policies, adhering to codes of conduct, implementing technical and organisational measures, as well as adopting techniques such as data protection by design, DPIAs, breach notification procedures and incident response plans.
5.1. Data subjects have the following rights regarding data processing, and the data that is recorded about them:
5.1.1. To make subject access requests regarding the nature of information held and to whom it has been disclosed.
5.1.2. To prevent processing likely to cause damage or distress.
5.1.3. To prevent processing for purposes of direct marketing.
5.1.4. To be informed about the mechanics of automated decision-taking process that will significantly affect them.
5.1.5. To not have significant decisions that will affect them taken solely by automated process.
5.1.6. To sue for compensation if they suffer damage by any contravention of the GDPR.
5.1.7. To take action to rectify, block, erased, including the right to be forgotten, or destroy inaccurate data.
5.1.8. To request the supervisory authority to assess whether any provision of the GDPR has been contravened.
5.1.9. To have personal data provided to them in a structured, commonly used and machine-readable format, and the right to have that data transmitted to another controller.
5.1.10. To object to any automated profiling that is occurring without consent.
5.2. DKMS UK ensures that data subjects may exercise these rights:
5.2.1. Data subjects may make data access requests as described in the Subject Access Request Procedure; this procedure also describes how DKMS UK will ensure that its response to the data access request complies with the requirements of the GDPR.
5.2.2. Data subjects have the right to complain to DKMS UK related to the processing of their personal data, the handling of a request from a data subject and appeals from a data subject on how complaints have been handled in line with the Complaints Procedure.
6.1. DKMS UK understands ‘consent’ to mean that it has been explicitly and freely given, and a specific, informed and unambiguous indication of the data subject’s wishes that, by statement or by a clear affirmative action, signifies agreement to the processing of personal data relating to him or her. The data subject can withdraw their consent at any time.
DKMS UK further understands ‘consent’ to mean that the data subject has been fully informed of the intended processing and has signified their agreement, while in a fit state of mind to do so and without pressure being exerted upon them. Consent obtained under duress or on the basis of misleading information will not be a valid basis for processing.
6.2. For sensitive data, explicit written consent of data subjects must be obtained unless an alternative legitimate basis for processing exists.
6.3. Where the data subject is a child, parental or custodial authorisation must be obtained.
This requirement applies to children under the age of 16.
7.1. All Staff and Volunteers are responsible for ensuring that any personal data that they are responsible for is kept securely and is not, under any conditions, disclosed to any third party unless that third party has been specifically authorised to receive that information and has entered into a confidentiality agreement.
7.2. Personal data shall be accessible only to those who have a legitimate requirement to use it. Who has access to what will be determined by the DPIA covering the relevant business process.
7.3. All personal data shall be held securely. Digital information will be secured in line with the requirements of DKMS Global’s Information Security policies and guidelines Paper information will be held in secure storage, with access limited to those authorised to access it.
7.4. All personal data should be treated with the highest security and must be kept:
8.1. Personal data shall not be disclosed to unauthorised third parties such as family members, friends, government bodies, and in certain circumstances the Police. All Staff shall exercise caution when asked to disclose personal data to a third party. There must be a legitimate business reason for the transfer and appropriate non-disclosure agreements or data processor agreements in place.
9.1. DKMS UK will not keep personal data in a form that permits identification of data subjects for longer a period than is necessary, in relation to the purpose(s) for which the data was originally collected.
9.2. Data may be stored for longer periods if the personal data will be processed solely for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes, subject to the implementation of appropriate technical and organisational measures to safeguard the rights and freedoms of the data subject.
9.3. The retention period for each category of personal data is set out in the Retention of Records Procedure along with the criteria used to determine this period including any statutory obligations for the retention of the data.
9.4. Personal data must be disposed of securely in accordance with the sixth principle of the GDPR – processed in an appropriate manner to maintain security, thereby protecting the “rights and freedoms” of data subjects. Any disposal of data will be done in accordance with the secure disposal procedure.
10.1. While DKMS UK is UK-based charity, it operates globally as part of the DKMS Group and as part of the international blood stem cell community and transplant sector. It shares and transfers personal data on potential and actual blood stem cell donors in pseudonymised form with Anthony Nolan (in the UK), the National Marrow Donor Program (in the USA), ZKRD (Zentrale Knochenmarkspender Registry Deutschland) and the World Marrow Donor Association and with other DKMS entities (namely, DKMS Germany and DKMS Registry) in order that the information can be listed on the UK Stem Cell Registry and made available in the UK and internationally (including outside the EEA) to stem cell donor registries, transplant centres, search units, laboratories and other healthcare institutions for the purposing of searching for, finding and matching potential donors with patients in need of a blood stem cell transplant.
10.2. In all transfers of data outside the European Economic Area, DKMS UK ensures that all requirements of the GDPR are met, particularly in the contracts and data sharing agreements between DKMS UK and relevant third parties.
DKMS UK has established a data inventory and data flow process. The data processing impact assessment procedure determines:
11.1. The charity is aware of any risks associated with the processing of particular types of personal data.
11.1.1. The level of risk to individuals associated with the processing of their personal data is assessed. Data protection impact assessments (DPIAs) are carried out in relation to the processing of personal data by DKMS UK, and in relation to processing undertaken by other organisations on behalf of DKMS UK.
11.1.2. Any risks identified by the risk assessment are actively managed in order to reduce the likelihood of non-conformance with this policy.
11.1.3. Where a type of processing is likely to result in a high risk to the rights and freedoms of natural persons, in particular using new technologies and taking into account the nature, scope, context and purposes of the processing, a DPIA will be undertaken to assess the impact of the envisaged processing operations on the protection of personal data. A single DPIA may address a set of similar processing operations that present similar high risks. The DPIA must be signed off by the Data Protection officer before processing commences.
11.1.4. The Data Protection Officer shall, if there are significant concerns, escalate the matter to the CEO and the Board of Trustees.
11.1.5. Appropriate controls will be selected and applied to reduce the level of risk to an acceptable level, in line with the charity’s risk policy and the requirements of the GDPR.
The CEO is the owner of this document and is responsible for ensuring that this policy document is reviewed in line with the review requirements stated above.
As of 29th October, Florian Modlinger is listed with the ICO as the Data Protection Officer for DKMS UK. For all data protection questions please email info@dkms.org.uk.