Notice Regarding Privacy

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Outline

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1.1. This Privacy Notice has been formulated to provide you with an understanding of how we record, store, process, transfer, or transmit your data during your visits to our website or while utilizing the services provided therein.

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1.2. In the processing of your personal data, we adhere strictly to the data protection regulations outlined in the EU General Data Protection Regulation (GDPR) and the Data Protection Act 2018. Additionally, we adhere to guidance provided by the Information Commissioner’s Office.

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1.3. Personal data encompasses all information relating to you individually, including but not limited to your IP address, name, address, email data, and user behaviour.

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1.4. We retain the right to amend the contents of this Privacy Notice, and therefore recommend that you refer to this notice regularly.

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1.5. The data controller, as defined in Article 4, Paragraph 7 of the EU General Data Protection Regulation (GDPR), is Regenerative and Cellular Medicine Ltd UK (also referred to as RCMR). RCMR (20-22 Wenlock Road, London, England, N1 7GU) also acts as a joint controller for RCMR UK's personal data pertaining to blood stem cell donor recruitment, registration, and collection.

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1.6. RCMR UK’s data protection officer can be reached via email at dataprotection@rcmr.com or by mail addressed to our postal address with the subject line "Data Protection Officer".

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What types of personal data do we manage?

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When you access our website or utilize the services we offer through it, we gather data pertaining to your interaction. Depending on your activities on our platform, this may encompass the following details:

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2.1. Purely Informational Use:

You have the option to explore our website without furnishing any personal information. If you engage with our website solely for informational purposes, without utilizing features like making donations, registering as a blood stem cell donor, completing contact forms, or transmitting information to us in other ways, we do not collect personal data, except for the information automatically transmitted by your browser to facilitate your website visit. When you access our website, we collect the following necessary data to display the content and ensure its stability and security:

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- IP address

- Time zone deviation from Greenwich Mean Time (GMT)

- Country of access

- Request content (specific page)

- Request date and time

- Referring website

- Data transmission volume

- HTTP status code

- Operating system and interface

- Browser software language and version

- Cookie settings

- Notification of successful access/retrieval

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This information pertains to the device you use. We utilize this data (excluding your computer's IP address) solely for statistical analysis to gauge demand for our website content and services. This data is aggregated across all website users, preventing identification of individual users. It is not merged with data from other sources.

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2.2. Additionally, we offer various services beyond informational content, such as donating money, requesting registration kits, and contact forms, which require you to provide further personal information.

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2.2.1. Contact via Email or Contact Form:

When you reach out to us via email or one of our contact forms, we process and store the information you provide (your email address and your name and phone number) to respond to your inquiries. User data might be stored in a customer relationship management system (CRM) or a similar system.

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2.2.2. Donating Money via Our Website:

If you choose to donate money through our website, we process the necessary data for the transaction, depending on your chosen payment method:

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- Credit card payment: We process your name, address, and email address to facilitate the transaction and send you donation confirmations if needed.

- Direct debit payment: Your name, address, email address, and account details are processed for the payment transaction and confirmation.

- PayPal payment: PayPal handles transactions, and we process personal data only as necessary for donation confirmation.

- Apple Pay and Google Pay: Transactions are managed by these services, and we process personal data as required for donation confirmation.

- Bank transfer: No additional personal data is processed beyond what is collected for informational visits to our website.

- SMS payment: Only your phone number is processed.

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2.2.3. Ordering a Blood Stem Cell Donor Registration Kit:

When ordering a registration kit to become a blood stem cell donor, we process the information provided during the registration process, including contact details, biological sex, height, weight, medical and GP details, ethnicity, date of birth, and genetic data from returned buccal swabs if applicable. If you become a registered donor, your data is retained in the database until your 61st birthday as a donor and then until 80 as a potential recipient unless you request removal.

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2.2.4. Links to Third-Party Websites:

Our website contains links to third-party provider websites. Clicking on these links redirects you to the respective third-party websites, transmitting user information in the process. We advise reviewing the data protection policies of these third-party websites before sharing any personal information. We are not responsible for their operations or data handling practices.

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What reasons do we have for processing your personal data?

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3.1. We manage your personal data with precision, ensuring it is utilized only to sustain a functional website and to deliver our content and services effectively. Processing of personal data occurs within the bounds of statutory provisions or with explicit consent from the individual concerned.

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3.2. When you browse our website for informational purposes, we collect only the essential data necessary for displaying our content, ensuring site stability, and bolstering security. Our processing is grounded in the principle of "legitimate interest" as per Article 6 para. 1 (f) of the GDPR.

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3.3. Communication initiated through email, or our contact form results in the utilization of your personal data solely for responding to your inquiries. Our processing, in this case, is also based on "legitimate interest" under Article 6 para. 1 (f) of the GDPR.

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3.4. In instances where you contribute monetary donations through our website, your data is processed exclusively to fulfil the donation contract. This processing is justified under the legal basis of "performance of a contract" as per Article 6 para. 1 (b) of the GDPR.

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3.5. Requesting a blood stem cell registration kit involves processing the data provided to facilitate the swift dispatch of the kit via postal service and to expedite the critical registration process. The personal and genetic data collected serves several purposes:

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- Registering you as a potential blood stem cell donor in both the RCMR database and to search other registries for matching purposes.

- Facilitating the matching of your tissue characteristics with those of potential blood stem cell transplant recipients, specifically patients battling blood cancers or disorders in need of potentially life-saving stem cell transplants.

- Utilizing pseudonymized genetic data for scientific analysis, assessment, and immunogenetics research aimed at enhancing the processes and outcomes of blood stem cell transplantation for patients with blood cancers and disorders.

- Fulfilling lawful requests from regulatory or enforcement agencies overseeing RCMR’s endeavours in blood stem cell donor recruitment and transplantation.

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3.6. Your email address is processed exclusively to address any existing queries or provide information pertaining to the registration kit order.

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3.7. The legal basis for processing your personal/genetic data lies in your express and voluntary consent, provided in accordance with Article 6 para. 1 (a) of the GDPR.

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How is your personal data managed by us?

4.1.  When utilizing our website, your data is securely transmitted to us in encrypted form, preventing unauthorized access by third parties. We store your data on highly secure servers, accessible only to authorized RCMR personnel who are thoroughly versed in pertinent Data Protection Regulations and bound to adhere to them.

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Is personal information shared with third parties?

5.1. Your personal information may be shared with third parties under the following circumstances:

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- Donating money through the website: If you choose to use online payment services such as PayPal, Apple Pay, or Google Pay provided on our website, your information will be shared with these service providers for processing. Refer to section 2.2.2 of our Privacy Policy for more details.

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- Ordering a blood stem cell donor registration kit (also known as a "buccal swab kit"): We utilize trusted third-party suppliers to process the data collected during online registration for a buccal swab pack. This is done to facilitate the processing of your request and the handling of your data and returned swabs. All third-party suppliers operate under strict data protection and confidentiality agreements to ensure the highest standards of data security, processing, and storage. Your data, in pseudonymized form, may be shared with:

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   - The National Marrow Donor Program (USA),

   - The World Marrow Donor Association, and

   - Other registries for matching purposes, enabling your information to be listed on the RCMR Stem Cell Registry and made available internationally for the purpose of finding potential donors for patients in need of a blood stem cell transplant. Only relevant data for the donor search, such as a donor identification number, biological sex, date of birth, tissue typing results, and donor status, will be transmitted. Personal identifying information like names and addresses will not be shared.

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These registries, transplant centers, and other providers are contractually obligated to use your personal data only for agreed-upon purposes and to prevent accidental disclosure to third parties. Authorized regulators and auditors may also access your data for regulatory and safeguarding purposes. If you are identified as a potential match for a patient, we will contact you again to inform you of the next steps and seek your consent for the collection of additional personal and medical information and for further processing, storage, and use of your data.

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5.2. We do not sell or rent your data to any other companies or organizations. Under no circumstances will we use your email address or other data for purposes without your consent.

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How long is your personal data retained?

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General Overview:

6.1. We retain any personal data you provide until the purpose for collection is fulfilled, until you withdraw consent, object to processing, or request deletion.

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Website Use for Informational Purposes:

6.2. For purely informational website visits, your data is stored only for the duration of your visit and is deleted upon leaving.

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Contacting Us:

6.3. Data from email or contact form inquiries is deleted when no longer needed, or processing is restricted according to legal requirements, assessed regularly.

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Donations:

6.4. Data related to donations is retained until consent withdrawal or deletion request, subject to statutory archiving periods.

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Blood Stem Cell Donor Registration:

6.5. Data retention for registration kits varies based on factors like return of buccal swab and consent for additional processing.

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6.6. Unreturned swabs prompt contact attempts: unresponsive cases result in data blocking and eventual deletion.

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Summary of Retention Periods:

- Potential donors: Data retained until age 61 or as per specific consent.

- Online registrants: Data retained for 12 months post-swab dispatch.

- Fundraising supporters: Data retained for current financial year plus six years from last donation.

- Ineligible donors: Data retained for 12 months unless consent for alternative processing is given.

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Personal Profile:

- Ineligible donors’ post-registration: Data retained for 12 months unless consent for alternative processing is given.

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What communication will you receive from RCMR?

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7.1. By joining the RCMR database of potential blood stem cell donors, you will receive important updates regarding the operation and regulations of blood stem cell donation. This includes information about the donation process, any changes to regulations, and an annual communication requesting confirmation of your current contact details and any necessary updates to your personal information.

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7.2. Staying in touch with registered donors is crucial, especially considering the direct link between communication and successful donations. Since it could be years before a donor is called upon, regular contact helps reinforce their commitment and ensures they are prepared and reachable if matched with a patient in need. Timeliness is critical in stem cell donations, and maintaining contact enhances the chances of providing a life-saving opportunity.

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7.3. With your consent, you may also receive promotional emails and mailings containing general information about our activities, in addition to the essential communications outlined in section 7.1.

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7.4. If you wish to opt out of future communications, you can do so at any time without providing a reason. Simply send an email with the subject "STOPCOMMUNICATION" to stop@rcmr.com or inform us through the contact details provided in the imprint.

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What are my entitlements and rights?

You retain the following entitlements regarding the handling of your personal data:

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- Right to be informed

- Right to rectification or erasure

- Right to restriction of processing

- Right to object to processing

- Right to data portability

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Should you have previously given consent for us to process your personal data, you reserve the right to withdraw it at any time. Upon withdrawal, we will cease processing your personal data. You can specify purposes, such as opting out of receiving newsletters.

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To enact any of the rights, please direct your request to:

RCMR

20-22 Wenlock Road,

London,

N1 7GU

Alternatively, you can email us at: dataprotection@rcmr.com

Furthermore, you possess the right to file a complaint with the Information Commissioner’s Office regarding our handling of your personal data.

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Right to object to processing – details as per Article 21 GDPR:

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You have the right to object, at any time and for reasons concerning your specific situation, to the processing of your data based on Article 6 (1) (f) GDPR (data processing based on "legitimate interest"). Should you raise an objection, we will halt processing your personal data unless we can present compelling legitimate grounds for processing that outweigh your interests, rights, and freedoms, or if processing is necessary to establish, exercise, or defend legal claims.

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Storing IP addresses and cookies

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9.1. Alongside the mentioned data, we utilize cookies to ensure our website's availability to you. Cookies, small text files stored on your hard drive and assigned to your browser, provide specific information (outlined below) to the entity setting the cookie (in this case, us). Cookies lack the capability to execute programs or transmit viruses to your computer. Their purpose is to enhance the overall user-friendliness and effectiveness of the website.

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9.2 Cookies are either temporarily stored for the duration of your session (session cookies) or permanently (persistent cookies) on your device. Session cookies are automatically removed after your session ends, while persistent cookies are deleted either by you, the user, or after a certain period has elapsed. Cookies can be stored either for our website (first-party cookies) or by and for third-party companies (third-party cookies), allowing for the utilization of specific services from third-party entities. Cookies serve various functions, categorized into four types:

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- Technically necessary cookies

- Functional cookies

- Analytical cookies

- Advertising/tracking cookies

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Technically necessary cookies are essential for the website's operation. Functional cookies streamline website usage and enhance its functionalities. Analytical cookies gather information about your usage patterns to improve the website's experience. Advertising/tracking cookies deliver interest-based advertisements.

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Manage your cookie preferences for our website:

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9.3 Cookies are stored on your device and transmitted from it to us or third-party companies. As a user, you retain full control over cookie usage on your device. Adjusting the settings in your internet browser allows you to prevent cookies from being stored on your device, and you can delete already stored cookies at any time. Deactivating and/or deleting our website's cookies may limit your access to certain functions.

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9.4. We utilize "local storage" and "session storage" as cookie alternatives integrated into the browser. Web storage securely stores data in the user's browser without transmitting it unencrypted over the internet.

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9.4.1. Local storage: This encompasses all browser windows/tabs and is cleared solely by JavaScript or through the browser cache.

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9.4.2. Session storage: This pertains to an individual browser window/tab and is automatically cleared upon closing the browser window.

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Which social media plugins are utilized by us?

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10.1. Our website incorporates social media plug-ins from various platforms. Upon accessing a specific page featuring such a plug-in, your browser establishes a direct connection with the servers of the respective social networks. This connection is initiated after you grant permission in the "privacy settings" pop-up to display external content on our site. The content of the plug-in is transmitted directly to your browser by the social networks and seamlessly integrated into the website. Your preferences regarding external content display can be managed through the "privacy settings" pop-up, accessible at any time via the "consent management" link in the website footer.

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10.2. Integration of these plug-ins notifies the social networks that you have visited the corresponding page on our website. If you are logged in to any of these networks, your visit may be associated with your account. Interaction with the plug-ins, such as clicking "Like" or sharing a tweet, results in the transmission of relevant information directly from your browser to platforms like Facebook and Twitter, where it is stored.

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10.3. We are not liable for the services provided by third-party platforms linked on our website, such as Twitter or Facebook. These providers cannot link IP addresses with other personal data collected through our website. Further details on data collection by third-party providers can be found on their respective websites.

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10.4. Currently, we utilize social media plug-ins from Facebook, Twitter, and Instagram. These enable direct communication with the plug-in provider via the respective social media share buttons. Activation of a plug-in notifies the provider that you have accessed the corresponding page on our site. Data mentioned in section 2.1 of our Privacy Policy is also transmitted. For instance, Facebook anonymizes IP addresses immediately after collection in the UK. Your personal data is transmitted to and stored by the plug-in provider upon activation (for US providers, data is stored in the USA). Given that plug-in providers often collect data via cookies, we recommend clearing your browser's cookies before interacting with the plug-ins.

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10.4.1. We lack control over data collection and processing by plug-in providers, including the full extent of data collected, processing purposes, and retention periods. We are also unaware of the procedures for deleting collected data.

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10.4.2. Plug-in providers store collected data as usage profiles for advertising, market research, and website customization purposes. These profiles may be used to target advertising or inform other users about your activities on our website. You have the right to object to the creation of these profiles by contacting the respective plug-in provider.

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10.4.3. Data transfer occurs irrespective of whether you have an account with the plug-in provider or are logged in. If logged in, the collected data is directly linked to your account. Regularly logging out from social networks, especially before activating the button, prevents association with your profile at the plug-in provider.

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10.4.4. For further details on data collection and processing by plug-in providers, refer to their respective privacy policies provided below:

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- Facebook Inc., 1601 S California Ave, Palo Alto, California 94304, USA: Data Policy.

- Twitter Inc., 1355 Market St, Suite 900, San Francisco, California 94103, USA: Privacy Policy.

- Instagram: Facebook Ireland Ltd., 4 Grand Canal Square, Grand Canal Harbour, Dublin 2 Ireland: Privacy Policy.

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How are YouTube and other videos incorporated?

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11.1. We have integrated YouTube videos into our website, sourced from RCMR's YouTube page, allowing playback directly on our site. YouTube, LLC, a subsidiary of Google Inc, operates YouTube from 901 Cherry Ave, San Bruno, CA 94066, USA, and Google's headquarters are at 1600 Amphitheatre Pkwy, Mountain View, CA 94043-1351, USA.

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11.2. When you visit our website and access the YouTube videos, YouTube receives information about your visit, including the data mentioned in section 2.1 of this Privacy Policy. This transmission occurs whether you have a YouTube user account and are logged in. If logged into Google, your data is linked to your account. To prevent data linkage to your YouTube profile, log out before activating the video playback. YouTube retains your data as usage profiles for advertising, market research, and website customization. This analysis, including targeted advertising, applies to all users, logged in or not. To object to data processing, contact YouTube and Google directly.

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11.3. Integrating YouTube enhances our website's appeal, serving our users better. This integration is based on our legitimate interest, as per Article 6 (1) (f) GDPR.

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11.4. For detailed information about YouTube's data collection and processing, refer to Google's Privacy Policy. This policy also outlines your rights and privacy settings. Please note that we lack control over YouTube and Google's data retention practices, so consult Google's Privacy Policy for specifics on personal data collection, processing, and use by these platforms.

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Queries and Feedback

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For inquiries concerning this Website Privacy Notice, kindly reach out to our data protection officer at: dataprotection@rcmr.com

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Policy for Protecting Data

1. Introduction

1.1. Background to the General Data Protection Regulation (‘GDPR’) and related data protection legislation.

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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.

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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” (e.g., an opt-in tick box) in order to confirm that consent and understanding.

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1.2. Definitions used (drawn from the GDPR)

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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.

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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 RCMR’ 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.

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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.

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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.

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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.

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Data controller – The legal entity who determines the purposes and means of the processing of personal data, i.e. the Registry. Referred to as ‘controller’ in this document.

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Data processor – Any organization processing data on behalf of a Data Controller.

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Data subject – any living individual who is the subject of personal data held by an organisation.

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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.

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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 behaviour. 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.

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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.

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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.

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Child – the GDPR defines a child as anyone under the age of 16 years old, although this may be lowered to thirteen 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.

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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.

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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.

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ICO – Information Commissioner’s Office – The organization responsible for the enforcement of GDPR and where data breaches are reported.

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2. Policy statement

2.1. The Management of RCMR 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 RCMR collects and processes in accordance with the General Data Protection Regulation (GDPR).

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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.

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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.

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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.

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2.5. This policy applies to all those doing work for RCMR, including staff, volunteers, and suppliers. Any breach of the GDPR or this Policy may be dealt with under the disciplinary policy.

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2.6. No third party may access personal data held by RCMR without having first entered into a data confidentiality agreement, which imposes on the third-party obligations no less onerous than those to which RCMR is committed, and which gives the right to audit compliance with the agreement.

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3. Responsibilities and roles under the General Data Protection Regulation

3.1. RCMR is a Data Controller under the GDPR and is responsible for the Registry policy and application of personal data relating to blood stem cell donor recruitment, registration, and collection.

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3.2. The RCMR Executive Leadership Team are responsible for the implementation and maintenance of effective policy and process to ensure compliance with the GDPR.

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3.3. The Data Protection Officer, a role specified in the GDPR, is a member of Executive Leadership Team, is accountable to the Chief Technology Officer for the management of personal data and for ensuring that compliance with data protection legislation and good practice can be demonstrated. This accountability includes:

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3.3.1. Development and implementation of the GDPR as required by this policy,

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3.3.2. Information security and risk management in relation to compliance with the policy.

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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.

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3.5. Compliance with data protection legislation is the responsibility of all Staff and Volunteers of the registry.

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3.6. Staff will receive training in data protection, and use of personal data on appointment and update training annually. Volunteers will receive monthly training before engaging on activities involving data.

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3.7. Staff and volunteers are responsible for ensuring that any personal data about them and supplied by them to the registry is accurate and updated every 6 months.

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4. Data protection principles

All processing of personal data must be conducted in accordance with the data protection principles as set out in Article 5 of the GDPR.

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4.1. Personal data must be processed lawfully, fairly, and transparently.

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Lawful – identify a lawful basis before you can process personal data. These are often referred to as the “conditions for processing,” for example consent.

Fairly – for processing to be fair, the data controller must make certain information available to the data subjects as practicable. This applies whether the personal data was obtained directly from the data subjects or from other sources.

The GDPR has increased requirements about what information should be available to data subjects, which is covered in the ‘Transparency’ requirement.

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Transparently – the GDPR includes rules on giving privacy information to data subjects in Articles 12, 13 and 14. These are detailed and specific, placing an emphasis on making privacy notices understandable and accessible. Information must be communicated to the data subject in an intelligible form using clear and plain language.

The specific information that must be provided to the data subject must, as a minimum, include:

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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 retained.

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.

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4.1.7. the recipients or categories of recipients of the personal data, where applicable.

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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.

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4.2. Personal data can only be collected for specific, explicit, and legitimate purposes.

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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 organisations GDPR register of processing.

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4.3. Personal data must be adequate, relevant, and limited to what is necessary for processing.

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4.3.1. The Data Protection Officer is responsible for ensuring that RCMR does not collect information that is not strictly necessary for the purpose for which it is obtained.

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4.3.2. All data collection forms (electronic or paper-based), including data collection requirements in latest information systems, must include a fair processing statement or link to a privacy statement and be approved by the Data Protection Officer.

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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

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4.4. Personal data must be accurate and kept up to date with every effort to erase or rectify without delay within a stipulated time limit to be decided by the Executive Board.

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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.

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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.

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4.4.3. It is also the responsibility of the data subject to ensure that data held by RCMR 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.

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4.4.4. Staff and Volunteers are required to notify the Registry of any changes in circumstance to enable personal records to be updated accordingly, using the Record of Data Processing procedure.

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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, considering the volume of data collected, the speed with which it might change and any other relevant factors.

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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 Registry 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.

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4.4.7. The Data Protection Officer is responsible for responding to requests for rectification from data subjects within 45 days as per the Subject Access Request Procedure. This can be extended to a further 60 days for complex requests. If RCMR 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.

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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.

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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.

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4.5.1. Where personal data is retained beyond the retention date for a legitimate business reason, it will be minimised or pseudonymised to protect the identity of the data subject in the event of a data breach.

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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.

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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.

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The Data Protection Officer will conduct a risk assessment, using the Data Protection Impact Assessment procedure, considering all the circumstances of the Registry’s controlling or processing operations. The four steps to be considered will include: 

describe the nature, scope, context, and purposes of the processing.

assess necessity, proportionality, and compliance measures.

identify and assess risks to individuals, and.

identify any additional measures to mitigate those risks.

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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 Registry, and any likely reputational damage including the possible loss of public trust.

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Technical and organizational measures are required to achieve appropriate security. Technical security will be assured by the achievement of suitable externally verified security certifications.

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Organisational measures include the following:

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Appropriate training.

Checking the reliability of employees (such as references etc.). Data protection in employment contracts.

Disciplinary action measures for data breaches.

Monitoring of staff for compliance with relevant security standards; Physical access controls to electronic and paper-based records.

Adoption of a clear desk policy.

Storing of paper-based data in lockable fire-proof cabinets.

These controls have been selected based on identified risks to personal data, and the potential for damage or distress to individuals whose data is being processed.

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4.7. The controller must be able to demonstrate compliance with the GDPR’s other principles (accountability)

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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.

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RCMR UK demonstrates compliance with the data protection principles by implementing a Quality Management System and data protection policies, adhering to codes of conduct, implementing technical and organisational measures, as well as adopting techniques such as data protection by design, Data Protection Impact Assessments,’ breach notification procedures and incident response plans.

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5. Data subjects’ rights

5.1. Data subjects have the following rights regarding data processing, and the data that is recorded about them:

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5.1.1. To make subject access requests regarding the nature of information held and to whom it has been disclosed.

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5.1.2. To prevent processing likely to cause damage or distress.

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5.1.3. To prevent processing for purposes of direct marketing.

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5.1.4. To be informed about the mechanics of automated decision-taking process that will significantly affect them.

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5.1.5. To not have significant decisions that will affect them taken solely by automated process.

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5.1.6. To sue for compensation if they suffer damage by any contravention of the GDPR.

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5.1.7. To take action to rectify, block, erased, including the right to be forgotten, or destroy inaccurate data.

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5.1.8. To request the supervisory authority to assess whether any provision of the GDPR has been contravened.

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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.

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5.1.10. To object to any automated profiling that is occurring without consent.

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5.2. RCMR 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 RCMR will ensure that its response to the data access request complies with the requirements of the GDPR.

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5.2.2. Data subjects have the right to complain to RCMR 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 managed in line with the Complaints Procedure.

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6. Consent

6.1. RCMR 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.

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RCMR 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 based on misleading information will not be a valid basis for processing.

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6.2. For sensitive data, explicit written consent of data subjects must be obtained unless an alternative legitimate basis for processing exists.

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6.3. Where the data subject is a child, parental or custodial authorisation must be obtained in writing and relevant documents must be completed.

This requirement applies to children under the age of sixteen and cord blood donors.

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7. Security of data

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.

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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 Data Protection Impact Assessment covering the relevant business process.

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7.3. All personal data shall be held securely. Digital information will be secured in line with the requirements of RCMR Information Security policies and guidelines. Paper information will be held in secure storage, with access limited to those authorised to access it.

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7.4. All personal data should be treated with the highest security and must be kept:

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in a lockable room with controlled access; and/or in a locked drawer or filing cabinet; and/or

if computerised, password protected in line with corporate requirements in the Information Security policies and guidelines; and/or

if stored on (removable) computer media, encrypted in line with the Information Security policies and guidelines.

8. Disclosure of data

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.

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9. Retention and disposal of data

9.1. RCMR 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.

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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.

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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.

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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.

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10. Data transfer outside the European Economic Area

10.1. While RCMR is UK-based Registry, it operates globally 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  the National Marrow Donor Program (in the USA), and the World Marrow Donor Association and with other RCMR entities  in order that the information can be listed on the global stem cell arena 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.

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10.2. In all transfers of data outside the European Economic Area, RCMR ensures that all requirements of the GDPR are met, particularly in the contracts and data sharing agreements between RCMR and relevant third parties.

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11. Information asset register/data inventory

RCMR has established a data inventory and data flow process. The data processing impact assessment procedure determines:

business processes that use personal data.

source of personal data

volume of data subjects

description of each item of personal data

processing activity

maintains the inventory of data categories of personal data processed.

documents the purpose(s) for which each category of personal data is used.

recipients, and potential recipients, of the personal data

the role of RCMR throughout the data flow

key systems and repositories

any data transfers, and

all retention and disposal requirements.

11.1. The Registry is aware of any risks associated with the processing of types of personal data.

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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 conducted in relation to the processing of personal data by RCMR, and in relation to processing undertaken by other organisations on behalf of RCMR.

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11.1.2. Any risks identified by the risk assessment are actively managed to reduce the likelihood of non-conformance with this policy.

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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  Data Protection Impact Assessment will be undertaken to assess the impact of the envisaged processing operations on the protection of personal data. A single Data Protection Impact Assessment may address a set of similar processing operations that present similar high risks. The Data Protection Impact Assessment must be signed off by the Data Protection officer before processing commences.

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11.1.4. The Data Protection Officer shall, if there are significant concerns, escalate the matter to the CEO and the Executive Board.

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11.1.5. Appropriate controls will be selected under the Quality Management System and applied to reduce the level of risk to an acceptable level, in line with the Registry’s risk policy and the requirements of the GDPR.

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12. Document owner and approval

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.

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13. RCMR Data Protection Officer

For all data protection questions please email data@rcmr.com.

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