How to move masses? Engaging 15% of a population in a biobank with limited time and resources

Author: Annely Allik – University of Tartu, Estonian Genome Center, Estonia

Co-authors:

• Annely Allik – Estonian Genome Center, University of Tartu, Estonia
• Liis Leitsalu – Estonian Genome Center, University of Tartu, Estonia
• Andres Metspalu
• Lili Milani – Estonian Genome Center, University of Tartu, Estonia

INTRODUCTION: In 2018, the Estonian government launched a program to map the genotypes of 150,000 citizens. The goal is to use genetic data as a basis for transforming the Estonian healthcare system to deliver personalized medicine. Estonia’s healthcare system has been revolutionized by innovative e-solutions. Patients and doctors benefit from the convenient access and savings that e-services have delivered. Each person in Estonia has an online e-Health record that can be tracked. Through the electronic ID-card-based access, the health information is kept completely secure and at the same time accessible to authorized individuals. These existing e-solutions will be built upon when incorporating genomic information in everyday health-care practice.

METHODS: In order to recruit participants and increase awareness of the potential of population biobanks, case examples showing the benefits of applying genetic information in health care were presented. To increase visibility, YouTubers and social media influencers were involved, having social media challenges to spread the word and get media attention. In order to make enrolment as flexible as possible, the Estonian ID-card systems and digitally signed consents were applied for sample-collection in a wide network of labs and pharmacies. A participant portal with an ID-login was created for participants to fill in their health questionnaire.

RESULTS: By the end of 2019, there were 200,000 participants in the biobank, increasing the previous cohort from 5% to 20% of the adult population of Estonia in less than two years. As part of the used case examples, around 3,000 individuals received personalized genetic risk information. Their impressions of the results received were collected through the participant portal and will be used in future initiatives involving genetic risk communication.

CONCLUSION: A lot can be done if you think out-of-the-box! The methods used throughout the project can be considered and applied by other countries.

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Presentation type: Individual paper
Theme: Technology