FarGen – participants in the genetic research infrastructure of the Faroe Islands

• Published in: Scandinavian Journal of Public Health
• Main Authors: Apol, Katrin D., Lydersen, Leivur N., Mortensen, Ólavur, Weihe, Pál, Á. Steig, Bjarni, Andorsdóttir, Guðrið, Gregersen, Noomi O.
• Other Authors: The Danish Parliament, The Faroese Research Council, The Faroese Parliament, Betri Foundation
• Format: Article in Journal/Newspaper
• Language: English
• Published: SAGE Publications 2021
• Subjects: Public Health, Environmental and Occupational Health; General Medicine; Faroe Islands
• Online Access: http://dx.doi.org/10.1177/14034948211046817; http://journals.sagepub.com/doi/pdf/10.1177/14034948211046817; http://journals.sagepub.com/doi/full-xml/10.1177/14034948211046817

Background: The demographic history of the Faroe Islands makes this isolated population – founded in the 9th century – interesting for genetic research. The goal of the FarGen project was to recruit individuals to the FarGen infrastructure to promote research into the genetic features of the Faroese people, and to develop a reference panel of population-specific variants. We aimed to recruit 1500 individuals. Participation was voluntary; participants had to donate a blood sample for whole-genome sequencing, and had to answer a questionnaire regarding sociodemographics, health, motivation and attitude towards participation in genetic research. Methods: A total of 1541 participants voluntarily joined the project, donated a blood sample and returned the questionnaire. Results: Answers from the questionnaire show that participants are, in general, European, have children, have a relatively high level of education, rate their health to be good, are willing to participate in future health-related research, and were motivated to sign up primarily to participate in research to help others and local research competency building. Conclusions: Overall, the initial cohort of the FarGen infrastructure comprises 3% of the Faroese population, and represents the general population well based on the collected sociodemographic data. However, there is an excess of women, and some geographic sub-regions and age groups are slightly underrepresented. We find the recruitment method with voluntary sign-up appropriate, and knowledge acquired through the first phase will aid the next phase of the project, with the aim of expanding the FarGen cohort with additional individuals, bio-specimens and body measurements in order to perform multifactorial analyses.