Participation in research Information on the use of health data

You can make a contribution to research by agreeing that your data and biological samples that are no longer needed may be stored, shared, and reused for research purposes. This includes data and samples that were collected in the past. They also include any that are collected for your care during current and future stays and consultations at HVS.

Your consent is voluntary.
It remains in effect for an indefinite period, or until you withdraw it. You may withdraw your consent at any time, without having to give a reason. To do so, you simply need to inform the Research Consent Unit at the address shown on the back of this document.

If you choose not to participate in research by selecting “NO” under statement A, your clinical data and biological samples cannot be used for research.

If you do not sign the consent form – that is, if you do not respond – The law allows samples and data to be used for research in exceptional circumstances, subject to the approval of the relevant ethics committee. It is therefore important that you make your wishes clear.

Your decision will not have any effect on your medical treatment.

If you withdraw your consent, your data and samples kept for research will be destroyed, subject to legal requirements. They will no longer be available for new research projects. This does not apply to data and samples that have already been used.

Data are stored at the hospital and protected in accordance with the legal requirements in effect*. Only authorised hospital staff, such as the doctors in charge of your care, have access to your data and samples in a way that identifies you.

Your biological samples are stored in biobanks. This ensures that your samples are managed correctly and linked to the data contained in your medical file.

Samples and data may be used for a variety of purposes, including research. They are subject to safety and quality standards.

*In particular, the Federal Act on Research involving Human Beings and data protection legislation.

If your data and samples are used for a research project, they are coded or anonymised.

• The term "coded" means that any personal information (such as your name or date of birth) is replaced by a code. The key that links each code to an individual is held securely by someone not involved in the research project. People who do not have access to the coding key will not be able to identify you.
• The term “anonymised” means that the link between the biological material or associated data and the individual is permanently broken. According to the law, data are deemed to be anonymised when they cannot be linked to a particular person without excessive effort. In principle, it is no longer possible to identify the individual, although absolute anonymisation cannot be guaranteed. Once the data and samples have been anonymised, it is impossible to prevent their use, even if the person concerned withdraws their consent. It will also not be possible to inform them of any research results that may be relevant to their health. Similarly, anonymised samples or data are not destroyed if consent is withdrawn.

The majority of research projects use coded data, particularly if they might produce results that would be relevant for the health of the people concerned.

You have the same rights to data protection in relation to research as you do for your care, in particular, the right to access your personal information.

Data and samples can be used by researchers who have been granted authorisation by the relevant Research Ethics Committee. Research projects are carried out in the hospital or in conjunction with other public institutions (such as other hospitals or universities) and private entities (such as pharmaceutical companies) in Switzerland or abroad.

Projects may include genetic analyses for research purposes.

Data or samples can only be sent abroad for research purposes if the data protection conditions in the destination country are at least as stringent as those applied in Switzerland.

In principle, research using your samples and data will not reveal any individual information about your health. In rare cases, however, relevant results may be discovered for which treatments or preventive measures are available. If this happens, you will be informed. If you do not wish to receive such information, please contact the Research Consent Unit at HVS at the address given at the end of this document.

Your participation will not involve any additional costs for you or your insurance company. The law does not allow any commercial use of data or samples. There will therefore not be any financial benefit for you or the hospital.