During certain types of health surveys, including the Västerbotten health surveys that were conducted among 40, 50 and 60 year olds, and the MONICA survey, participants were asked to provide samples (blood and/or urine) for future research.
Ethical Review
Before samples and data can be used, a panel of experts must approve this. The group of experts reviews the purpose of the research project and its scientific value.
An Ethical Review Board also makes an independent assessment and determines whether the research is ethically correct, i.e. if the people responsible for the project have weighed the various interests against each other in the best possible way.
Confidentiality
The integrity of the participants is protected by processing all samples and data in encoded form. The personal information, analysis data and other information that the participants provided is stored in protected data registers at Norrland University Hospital and Umeå University. When the responses to the surveys are analyzed and eventually summarized in writing, it is done using large groups of participants at the same time, not for individuals. Encoded information from databases during concurrent projects can be forwarded to researchers and analysis laboratories at other universities inside and outside of the country (even outside the EU, e.g. U.S.A.)
Withdrawing participation
In the future, if a person regrets submitting research samples, they can request that these samples be destroyed.
A person can cancel their participation in the study at any time without affecting their healthcare treatment. Participants are also entitled to prevent research personnel from reviewing their information in the registry.
Right to excerpts from the registry
Participants are entitled to request an excerpt from the registry to see what has been recorded about them and how the person's samples have been used and to correct any information that is incorrect.
Head and chief manager for personal information
In terms of collecting samples and storing sample material, the county councils in Västerbotten and/or Norrbotten are responsible for protecting personal information. Umeå University is the party responsible for protecting personal information during research that is conducted by university researchers.
Contact
If you have any questions, would like to request an excerpt from the register or would like to withdraw your participation, you can contact the Section of Biobank and Registry Support.
