If you are a participant in a scientific study and decide to discontinue participation, you can either send a notification to the study sponsor or the ethics committee. It is mandatory to accept a request for discontinuation from a study.

A notice of termination of an investigation may be made available in three ways:

• On a written form signed by the participant, in cases where the researcher has prepared one.

• Through a call to the investigator, or the national bioethics committee (see information sheet for participation in the study).

• By email either to the study sponsor or to the national bioethics committee (vsn@vsn.is).

If a withdrawal of a study has been sent to the responsible person, he shall inform the national bioethics committee of the decision of the participant. The responsible person shall inform the national bioethics committee of which data and biopsies are already collected and subsequently destroy them under the supervision of the national bioethics committee.

The investigator shall also notify the decision of the participant to the Data Protection Authority. The code key that connects the sample and other data to personal data shall be deleted. Thus, it shall be ensured that the results of studies that have already been carried out cannot be attributed to the participant.

Biocidal samples to be destroyed include:

• biopsy

• blood samples

• body fluids

• cells

• isolated genetic material (DNA/RNA).

No further research shall be carried out on these biopsies, whether the original biopsy or its isolated components, cells or genetic material.

The data to be deleted includes the information about the participant that has been recorded for the purpose of the study. No further examination of these data may be carried out. The national bioethics committee may decide that certain data relating to the safety of the participants in the study should be retained.

Results of studies that have already been carried out and based on the use of a biopsy and/or information from a participant who has stopped a study shall not be deleted. This is the basis for the validity of an informed consent to participate in a study until it is revoked. Results shall be preserved in a non-personal form, i.e. marked with a code or number, so that the results of the study can be verified.

The responsible person shall inform the national bioethics committee of the results available on the participant. The key to the code shall be deleted, so that the results cannot be attributed to the participant.