Privacy Policy
Privacy Policy
Seerave Global OncoBiome Atlas (known as "Seerave Global OncoBiome Atlas") is the data controller responsible for your personal information. We are committed to protecting your privacy and being transparent about how we collect, use, and manage your data.
This privacy notice explains how Seerave Global OncoBiome Atlas processes your personal data in accordance with the Data Protection (Jersey) Law 2018 ("DPJL"). It sets out your rights and our obligations as a data controller.
Our registered address is 35-37 New Street, St Helier, Jersey, JE2 3RA. You can visit our website at oncobiomeatlas.org.
The Data Protection Officer (“DPO”)
We have appointed a Data Protection Officer to oversee our compliance with data protection law and to be your point of contact for all matters relating to your personal data.
Data Protection Officer: Paul Byrne
Email: dataprotection@seerave.org
Telephone: +44 1534 735330
You may contact the DPO with any questions about this privacy notice or about how we process your personal data.
The kind of information we hold about you
Seerave Global OncoBiome Atlas is a centralized research platform that catalogs clinical datasets at the intersection of immuno-oncology and microbiome science. We work with researchers and organizations to enable collaboration on cancer immunotherapy research by making clinical cohorts visible as well as supporting data standardization and match-making efforts between different researchers.
To deliver this service, we process a range of personal data provided by collaborating organizations.
This includes clinical information, patient outcome data, biospecimen data, and lifestyle information.
All of this data is processed with appropriate safeguards and in accordance with data protection law.
How is your personal information collected?
We collect personal information about you in the following ways:
— Directly from you, when you provide information through our website, research enrolment forms, or other communication channels;
— from healthcare providers and research organizations with whom you are engaged, who share clinical data, test results, and outcome information with us;
— from biospecimen repositories and laboratory partners who process your samples and share profiling and multi-omics data with us;
— from medication and treatment records held by healthcare institutions;
— from questionnaires, surveys, or interviews in which you participate as part of a research study or collaborative project.
What information do we collect about you?
The categories of personal information we collect depend on your relationship with us and the research or collaborative activities in which you participate. The following table outlines the main categories:
Clinical and Medical Data
Diagnosis, medical history, treatment plans, surgical records, imaging reports, pathology findings, and clinical laboratory test results.
Patient Outcome Data
Disease progression, remission status, survival information, treatment response, and follow-up clinical assessments.
Biospecimen Data
Information about blood samples, stool samples, tissue samples, and other biological specimens collected from you, including collection date, sample type, and storage location.
Microbiome Profiling Data
Results of microbial analysis, taxonomic composition, functional characterization, and comparative data from your biological samples.
Multi-Omics Data
Genomic, proteomic, metabolomic, and other molecular profiling information generated from your samples.
Medication and Immunotherapy History
List of current and past medications, immunotherapy agents, dosages, treatment dates, and adverse reaction records.
Lifestyle Data
Information about diet, exercise habits, physical activity levels, and other lifestyle factors you provide.
Longitudinal Tracking Data
Time-stamped records of your health status, clinical visits, sample collections, and research activities over months or years.
Contact and Administrative Information
Name, date of birth, contact details, address, and unique study or patient identifiers.
Special Category Data
The DPJL recognizes certain categories of particularly sensitive personal data as "special category data". These include information about health, genetic data, and biometric data.
Much of the information we collect and process is special category data; specifically, clinical data, patient outcome data, microbiome profiling data, biospecimen data, multi-omics data, and medication history all fall within the definition of health data.
We do not routinely collect special category data beyond what is necessary for the research and collaborative activities you have engaged in. We process this data only on the basis of explicit consent, contract, or other legal grounds permitted by the DPJL, and we apply enhanced security measures to protect it.
How we will use information about you
We process your personal data for specific, legitimate purposes. The lawful bases under the DPJL on which we rely are set out below.
1. Legitimate interests (Article 9, Schedule 2 Part 1, Condition 1 of the DPJL)
We process your personal data where it is necessary for our legitimate interests as a research platform. For example, we use clinical data and outcome information to standardize datasets and make anonymized or pseudonymized research cohorts transparently accessible to collaborating researchers. This allows us to advance cancer immunotherapy research and improve understanding of the microbiome's role in treatment response, which benefits the broader research community and ultimately benefits patients.
2. Contractual performance (Article 9, Schedule 2 Part 1, Condition 2 of the DPJL)
Where you have entered into a research agreement, study enrolment agreement, grant agreement or collaboration contract with us or with a partner organization, we process your data as necessary to fulfil that agreement.
3. Consent (Article 9, Schedule 2 Part 1, Condition 3 of the DPJL)
In some cases, we ask for your explicit consent to process your personal data. For example, where you participate in a specific research project or where we wish to use your data for a purpose beyond the scope of your original enrolment, we will seek your clear and informed consent. You have the right to withdraw consent at any time.
We do not use your personal data for automated decision-making or profiling in ways that significantly affect you.
Change of purpose
We will only use your personal data for the purposes for which it was originally collected, or for purposes that are compatible with the original purpose, unless we have obtained your consent or unless the law permits us to do so.
If we intend to process your personal data for a new purpose that is materially different from the purpose for which it was collected, we will inform you of that new purpose before processing begins and will seek your consent where required by the DPJL.
For example, if you have provided clinical data for a study on immunotherapy response, and we later wish to use that data for a new research project on a different aspect of cancer treatment, we will contact you to explain the new purpose and seek your consent before proceeding.
Data sharing
We share your personal data with the following processors, who process it on our behalf under a contract with Seerave Global OncoBiome Atlas:
PropelFwd
Data Protection Managers. They provide advice and assistance with our data protection requirements and have no access to your data. They will only access your data if you submit a data rights request or if we have a data incident or breach.
A cloud based platform used to store, share and manage documents and files securely.
Seerave Foundation
A Jersey-based foundation advancing microbiome and cancer science to improve patient outcomes.
Processors are other organisations/services carefully chosen by Seerave Foundation to process your information correctly and securely. In the case of organisations outside of Jersey, the United Kingdom and the European Economic Area (EEA):
(a) we have prior written instructions for the transfer or
(b) we have entered into specific contractual terms with them to ensure that they treat your personal data in a way equivalent to that in which they would be required if they were established in Jersey.
We ensure that your privacy rights are respected in line with this Notice and the same protection is given to your personal data as laid down by the DPJL.
Data security
Seerave Global OncoBiome Atlas takes the security of your personal data seriously. We implement appropriate technical and organisational measures to protect your data against unauthorised access, alteration, disclosure, or destruction. These measures include encryption, access controls, secure storage systems, and regular security reviews.
However, no method of transmission over the internet or method of electronic storage is completely secure. Whilst we strive to protect your personal data using reasonable safeguards, we cannot guarantee absolute security. You acknowledge that you provide your personal data to us at your own risk, although we will take all reasonable steps to protect it.
Data retention
We retain your personal data for as long as is necessary to fulfil the purposes for which it was collected, or as required by law.
Seerave Global OncoBiome Atlas maintains a data retention schedule. Retention periods are managed by our Data Protection Officer and management in accordance with our legal obligations and the legitimate needs of the organisation. When your personal data is no longer required, we dispose of it securely using digital erasure and deletion methods.
If you would like more information about our specific retention periods for particular categories of data, please contact us using the details provided in the Data Protection Officer section above.
Rights of access, correction, erasure, and restriction
Under the Data Protection (Jersey) Law 2018, you have the following rights in relation to your personal data:
— Right of access: You have the right to obtain confirmation as to whether we hold your personal data, and if we do, to receive a copy of that data together with certain supplementary information.
— Right of rectification: You have the right to request that we correct any inaccurate or incomplete personal data we hold about you.
— Right to erasure: You have the right to request that we delete your personal data, subject to certain exceptions (for example, where we are required to retain it by law or to establish, exercise, or defend legal claims).
— Right to restriction of processing: You have the right to request that we restrict our processing of your personal data, for example whilst we verify its accuracy or consider your objection to processing.
— Right to data portability: You have the right to request that we provide your personal data in a structured, commonly used, and machine-readable format, and to transmit that data to another controller where technically feasible.
— Right to object: You have the right to object to processing of your personal data for certain purposes, including marketing and profiling.
If you wish to exercise any of these rights, please see the section "How to Request Your Information" below.
How to request your information
To exercise any of your data subject rights, please submit your request using our Data Rights Portal.
You can also email your request to our Data Protection Officer at dataprotection@seerave.org, or alternatively write to us at:
Seerave Global OncoBiome Atlas
c/o Seerave Foundation
Data Protection Officer
Address: 35-37 New Street, St Helier, Jersey, JE2 3RA, Channel Islands
Phone: +44 1534 735330
Right to withdraw consent
Where we process your personal data on the basis of your consent, you have the right to withdraw that consent at any time. Withdrawal of consent will not affect the lawfulness of processing carried out before the withdrawal.
To withdraw your consent, please contact our Data Protection Officer using the contact details provided in the section "How to Request Your Information" above, or use our Data Rights Portal.
Automated decision-making
We do not use automated decision-making or profiling in relation to your personal information.
Changes to this Privacy Notice
Seerave Global OncoBiome Atlas may update this privacy notice from time to time to reflect changes in our data processing practices, legal requirements, or other relevant factors. Any changes will be posted on this page, and we will update the "Last Updated" date at the top of this notice.
If we make material changes to this notice, we will notify you by email (if we have your email address) or by other appropriate means before the changes take effect. Your continued use of our services after such notice constitutes your acceptance of the updated privacy notice.
Complaints
If you have concerns about how Seerave Global OncoBiome Atlas processes your personal data, we encourage you to contact our Data Protection Officer in the first instance:
Data Protection Officer
Name: Paul Byrne
Email: dataprotection@seerave.org
Phone: +44 1534 735330
35-37 New Street, St Helier, Jersey, JE2 3RA, Channel Islands
If you are not satisfied with our response, or if you believe we have breached your data protection rights, you have the right to lodge a complaint with the supervisory authority:
Jersey Office of the Information Commissioner
Email: enquiries@jerseyoic.je
Web: jerseyoic.org
Phone: +44 (0) 1534 716530
2nd Floor, 5 Castle Street, St Helier, Jersey JE2 3BT
Last updated: 11th June 2026