Sample donor information and informed consent

Prior to taking any samples, a nurse, a study nurse, or a physician reviews the information sheet and consent form with the patient and answers any questions. The Hematological Biobank’s consent documents will be published here later.

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Once the consent has been signed, the sample donor’s data are recorded in the biobank’s clinical data registry, and biobank samples are collected. A copy of the signed consent is provided to the patient. The original signed consent is retained by the Hematological Biobank.

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How samples are collected

The Hematological Biobank collects samples and data only from patients who have given their informed consent. Blood samples are collected at participating hospitals simultaneously with diagnostic samples. Bone marrow and skin biopsy samples are collected in connection with bone marrow sampling as part of the patient’s routine care. The samples are collected by the hospital staff.

 

Use of samples

The Hematological Biobank stores samples and related data for the needs of research in the field of haematology. Samples may be provided in coded (pseudonymised) form for studies investigating methods for the better prevention, more accurate diagnosis, and more effective treatment and follow-up of haematological diseases.

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Researchers must request access to the samples and data in writing if they wish to use them for research purposes. The Executive Board of the Hematological Biobank decides on access based on the study protocol. 

 

Access to samples and data is always governed by a written agreement. The recipients of samples and data are obliged to publish the results of their research and return the sample analysis data to the biobank. Directly identifiable data are, as a rule, not disclosed for biobank studies.

 

Research results and genomic data may be shared with other researchers through international databases without personal identifiers, so the risk of identifying an individual is very low. Such data sharing is only possible if it has been separately agreed in writing with the researcher or the recipient of the material.

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Read more about studies that have utilised samples and data collected in the Hematological Biobank.​​​​

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Rights of the sample donor

A patient who has donated samples to the Hematological Biobank has the right to check whether their samples and data are stored in the biobank. The donor also has the right to obtain information on the source of their data and with whom their samples and data have been shared.

 

The donor has the right to receive information concerning their health derived from the sample. The donor is offered an opportunity to receive an explanation of the significance of such information. A fee may be charged, not exceeding the cost of providing the explanation. Where appropriate, the donor will be referred to healthcare services.

 

The donor has the right to restrict or withdraw their consent at any time without this affecting their future medical care. Withdrawal or restriction is submitted in writing using the biobank consent refusal form. The donor may also choose whether to receive information about biobank research findings that may be relevant to their health.

 

For matters concerning data subject access requests and the rectification of inaccurate data, please contact the Hematological Biobank at hembio@helsinki.fi.

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Privacy notice

The Privacy Notice (in Finnish) is available here. 

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