LifeGene for Participants
Thank you for participating in LifeGene!
A follow-up survey for previous participants was conducted in the spring of 2024.
News: The Act on Certain Research Databases
We would now like to inform you about a change that affects the handling of data within LifeGene. A new law on research databases came into effect in Sweden on January 1, 2025 (2024:1146). This law aims to improve the conditions for long-term, ethically approved, and high-quality research by providing clearer rules on how data may be processed and linked within so-called research databases.
What does the new law mean for you as a participant in LifeGene?
LifeGene has now been approved as a research database under the new law. This means, among other things, that we are now allowed to link the information you previously provided to LifeGene with data from national health registers, such as the National Patient Register, the National Prescribed Drug Register, the National Medical Birth Register, the National Cancer Register, the National Dental Health Register, and the National Cause of Death Register.
The purpose of this data linking is to enable even better research into how genetics, lifestyle, and the environment affect health over time. These links make it possible to follow disease progression and healthcare contacts in a more comprehensive way, without requiring any further action from you as a participant.
Follow-up survey 2024
LifeGene began its data collection in September 2009. It contains information from a total of 50,437 participants and consisted of two phases. The first part was a web-based questionnaire and the second a health test with sampling. The sampling collected blood, serum and urine from more than 29,500 participants, these are stored at KI Biobank. Sampling was done on one occasion only and the sub-moment ended in 2018. The web-based questionnaire was answered annually during LifeGene's active period.
LifeGene is now making a new web-based questionnaire. Your participation in this form is important as LifeGene is the basis for many different research projects which are of course approved by the Ethics Review Authority. You as a LifeGene Participant, who is 18 years of age or older, are hereby invited to contribute to this valuable database. Participation in the study is completely voluntary and does not affect your access to future healthcare.
To access the questionnaire, you need to identify yourself with Bank ID and sign the consent, you do this via this link: https://lifegenestudien.se If you have any questions about the survey or your participation in LifeGene, you can reach us via e-mail: lifegene@meb.ki.se
Right to obtain information
Your personal data is handled in accordance with the legislation on public documents and authorities' archives. According to the law, you have the right to access, correct or delete your personal data, as well as the right to restrict the processing of your personal data.
Send your application to:
Registrator
Phone: 08-524 865 95
Fax: 08-31 11 01
E-email: registrator@ki.se
Address: Karolinska Institutet
171 77 Stockholm
Test results
If you wish to see your test results, we can send them by post to your registered address. In that case, send an email to lifegene@meb.ki.se
End my participation
Your participation in LifeGene is completely voluntary and can be terminated at any time without giving any reason.
If you want to end your participation in LifeGene but want to permit already collected samples to be used in future research, send us an email at lifegene@meb.ki.se and say that you no longer want to be contacted by LifeGene but that LifeGene can use already collected samples.
We will then unregister you and send you a confirmation that this has happened. You will not be contacted again.
If you want to end your participation and not allow any of the samples and/or survey data to be used for future research, you can email us at lifegene@meb.ki.se. We will then send you a form to fill in and return to us. We will then terminate your participation in accordance with your wishes on the withdrawal form.
There are different levels of withdrawal of consent. Which one you choose is up to you and you can see the options on the form. If it is unclear which option you want to choose, you are always welcome to contact us.