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Data Protection and Privacy Policy

Policy Governing the Use of Human Samples in Biomedical Research

1. The right to information

The Policy governing the use of human samples in biomedical research in place at the Spanish National Cancer Research Centre Foundation (F.S.P), hereinafter, CNIO, refers to the need to regulate the fulfilment and respect for the rights of people to integrity, to the protection of dignity, and the identity of human beings in any biomedical research that uses human samples.

Pursuant to the provisions of EU Regulation 2016/679 regarding the protection of personal data (GDPR), you are hereby informed that any personal information you provide us with will be duly recorded and incorporated into the data processing systems managed by the CNIO (C/ Melchor Fernandez Almagro, 3 - 28029 - Madrid), contact email address: www.cnio.es/ing/contactar.asp

Consequently, any biological material you donate to the CNIO, having previously signed the opportune informed consent document, shall be stored in the CNIO's Biobank or in the collection of samples owned by the researcher who has requested the above written authorisation.

In this regard, if you would like further information about the CNIO's privacy policy, go to the following link on the webpage: www.cnio.es/ing/privacidad

2. Purpose

Samples shall be used in biomedical research projects about cancer in order to advance knowledge about the prognosis, diagnosis and treatment of this disease.

When samples are used in a specific research project, the title of said project shall be included in the informed consent document provided to the source subject for signing (participant/owner of the biological sample).

Personal data shall only be used for the development of the projects in which the samples are used, in order to contact the source subject again or their relatives if necessary, always with their authorisation, in the terms set out under current legislation.

3. Consent of the source subject

All the samples used by the CNIO for research purposes will have the corresponding informed consent, gathered either at the diagnosis session when the subject agrees to donate any excess from their sample, or compiled for the specific destination research project.

This consent provides the source subject's authorisation to use their sample and for the automated processing of their data.

4. Security

For the development of the different research projects, samples shall be subject to a process of pseudonymisation, whereby the participating researchers shall not have access to the source subject’s personal data with the exception of genetic research in which data are necessary for the research itself; in this case, only the lead researchers on the project shall have access to the subject’s identity. Personal data shall only be used for the development of the projects in which the samples are used, in order to contact the source subject again or their relatives if necessary, always with their authorisation, in the terms set out under current legislation.

Samples shall be stored on the CNIO's premises with the necessary security and conservation measures to guarantee limited access to them and their custodianship under optimum conditions for their usage in research processes or projects.

5. Research results

Pursuant to the provisions of the Biomedical Research Act 14/2007, all participants in research projects have the right to know the results of the procedures to which their biological sample has been subjected, including genetic information, in the event that it has been processed.

To this end, the interested party may obtain this information by following the procedure put in place for this purpose by the CNIO, described in its privacy policy: www.cnio.es/ing/privacidad

Pursuant to the provisions set out under article 4.5 of the Biomedical Research Act 14/2007, the person's right to decide whether or not they are informed about any unexpected discoveries made shall be respected. However, when this information, in the judgement of the responsible doctor, is necessary in order to avoid major harm to said person's health or that of their biological relatives, a close family member or a representative shall be informed, having previously consulted the welfare committee if there is one. In any case, communication shall be limited exclusively to the data required for these purposes.

6. Exercising rights and withdrawal of Consent for the use of biological samples.

I) Pursuant to the provisions set out in the CNIO's privacy policy, you have the right to access your personal data, and to request the rectification of any inaccurate data, or request their erasure when, among other reasons, the data are no longer necessary for the purposes for which they were compiled. You may request the limitation of the processing of your data, in which case the CNIO will only keep them in the event it must exercise or defend complaints or claims. Equally, you may contest the processing of your data, in which case, the CNIO shall stop processing them, unless for legitimate reasons, or for reasons of defence in the event of possible complaints or claims, it cannot agree to your request to contest the processing of your data. Equally, you may request the portability of your data.

To exercise these rights, i) you may come to the CNIO premises in person to request the forms provided for this purpose at the Centre's reception, or download them (and follow the corresponding indications to submit them) from the following link pertaining to the CNIO's privacy policy: www.cnio.es/ing/privacidad

II) All subjects that provide a sample for biomedical research have the right to withdraw their initial consent, at which point their sample will be destroyed, but not the results obtained up until that point using the sample.

To exercise your right to withdraw your consent regarding the use of your biological sample, please download the following form: "Withdrawal of consent regarding use of the sample" (in Spanish), and send it to the following address:

Fundación Centro Nacional de Investigaciones Oncológicas (F.S.P)
Att Secretarias de Dirección
C/ Melchor Fernández Almagro 3
28029 MADRID

7. Modification of this policy

CNIO reserves the right to modify this policy in order to adapt it to future legislation or jurisprudence, with no prior warning.