The Amsterdam UMC and the GGD Amsterdam, who jointly carry out the HELIUS study, consider the protection of your privacy and the security of your personal data very important. In this privacy statement, we explain how we handle your personal data and how we protect your privacy. Personal data are data that can be traced back to you as an individual.
How do we process your personal data and bodily material (hereinafter referred to as ‘data’)?
If you participate in the HELIUS study, you have been approached in advance to give permission for the use of your data. You subsequently gave us permission to collect, use and store your data (and bodily material) for use in the HELIUS study. The collection, use and storage of your data is necessary to be able to answer the questions posed in the study and to be able to publish the research results, for example in scientific articles. Research results are always published without personal data.
It concerns the following data:
- contact details: your name, address, email address, telephone number, general practice
- identity data: your date of birth, gender and ethnicity
- (medical) data about your health that we collect during the study
- bodily material: such as blood, urine and faeces
We only use the collected data for scientific research. We use your name, address and other contact details to invite you to participate in the HELIUS study and/or to inform you about the results thereof.
If you have given permission for this in the consent form, we will also request information about you from organisations that register information about your health, such as general practitioners, pharmacies, hospitals, health insurers, the national vaccination programme and population screening registers. This also applies to information about you that we request from data sources. The data sources from which we request data for the purpose of the HELIUS study include:
- National Basic Register Hospital Care (‘Landelijke Basisregistratie Ziekenhuiszorg’)
- Dutch Cancer Registry (‘Nederlandse Kanker Registratie’)
- COVID-19 registry (GGD Amsterdam)
- Achmea Health Database
We only collect and use your data that we request from organisations and data sources to answer questions proposed in the HELIUS study.
The duration of the HELIUS study is 40 years. We will store your research data and bodily material for a maximum of 15 years after the end of the HELIUS study. After these terms have expired, we will immediately destroy your data and bodily material.
How do we protect your privacy?
Protection of your data
We handle your data with great care in accordance with the General Data Protection Regulation and other applicable privacy and data protection regulations.
To protect your privacy, we encrypt your data and bodily material with a code. We omit your name and other information that can identify you directly. Researchers who work with your data and bodily material only use this code. They do not know your name or address. Any information in reports or publications about the study cannot be directly related back to you either. Your encrypted research data and bodily material may be shared with other researchers to also conduct scientific research.
Within the HELIUS study we also work together with researchers outside the Amsterdam UMC and the GGD. We only share coded research data or coded bodily material, and we make sure your privacy is protected through a contract, and that your data may only be used for research purposes.
As part of the HELIUS study, your coded data and bodily material may also be forwarded to researchers working outside the European Union (EU). In these countries, the EU regulations for the protection of your personal data do not apply. However, HELIUS will ensure that your privacy and data are protected to an equivalent level as required in the EU. Agreements about this are recorded in a contract in accordance with the Standard Contractual Clauses of the European Commission and, if necessary, additional protectives measures are taken.
Access to your data
Employees of the HELIUS study will only have access to and view your personal data if this is necessary for the performance of their work related to the project. They will always sign a confidentiality agreement for this.
In addition, it may be necessary for persons from their monitoring and/or supervisory authority to view your data without a code, in order to be able to check whether the research has been carried out properly and reliably. These persons have a duty to keep your data confidential. It concerns the following persons:
- An inspector who monitors the study.
- National and international supervisory authorities. For example, the Health and Youth Care Inspectorate.
Protection of your data
We take appropriate technical and organisational measures to protect your data against loss, unauthorised access or any form of unlawful processing.
What happens if you no longer wish to participate in the HELIUS study?
You can decide at any time to not or no longer participate in the HELIUS study. You do not have to state a reason for this. If you state that you no longer wish to participate in the HELIUS study, then:
- We will no longer contact you
- From this moment, we will no longer collect new data about you.
The research data and bodily material collected up to the moment of no longer participating may still be used by the researchers. If you want us to destroy your bodily material, please let us know. In case your bodily material has already been used for research purposes, the researcher may continue to use the results. When researchers examine your data and bodily material, they will only use the aforementioned code. They do not know your name or address.
Who is responsible for the processing of my personal data?
The Amsterdam UMC and the GGD Amsterdam are responsible for the data processing described in this privacy statement.
Your other rights
- Access and insight: You have the right to request us to inform you in writing about what information we have collected, use and store about you;
- Correction: if any personal data we have collected, use or store is not correct, you can request us to correct them;
- Deletion: if you no longer agree to us collecting, using and storing your data for the HELIUS study or if you believe that your data is no longer required by us for the HELIUS study, you can request us to delete the relevant data;
- Restriction: If you dispute the accuracy of the data that we have collected, use or store about you, or if you have objected to the use of your data, you may request us to stop using your data during the objection period. During this period, your data will only be stored;
- Objection: If you are not sure whether we are authorised to collect, use or store your data, you may object to this.
- Data portability: you have the right to request that your data be sent to you or another organisation mentioned by you.
For general information about your rights when processing your personal data, please visit:
- the AMC website (https://www.amc.nl/web/mijn-afspraak/rechten-en-plichten/patientenvoorlichting/privacystatement-voor-patienten-bezoekers-en-deelnemers-aan-onderzoeken.htm)
- the website of the Dutch Data Protection Authority (www.autoriteitpersoonsgegevens.nl)
If you have any questions or complaints about the processing of your personal data, we recommend that you first contact the secretariat of the HELIUS study, phone: 020- 5663792 or by email: firstname.lastname@example.org. In case of complaints about the processing of your personal data, you may also contact the Data Protection Officer of the AMC via email@example.com or the Dutch Data Protection Authority.