%0 Journal Article
%T Biobank Participants and the Return of Genetic Findings: Results from a Mixed-Methods Study in Lithuania
%A Tomas Musulas
%A Albinas Gervickas
%A Marijus Leketas
%J Asian Journal of Ethics in Health and Medicine
%@ 3108-5059
%D 2023
%V 3
%N 1
%R 10.51847/YlWXNJWG1o
%P 94-108
%X The question of whether and how to return individual genetic findings (IGF) in biobank research continues to generate debate worldwide. Different return models are being considered, and practical frameworks for their use are gradually evolving. This study explores how both the general public and experts in Lithuania view the return of IGF and seeks to inform future strategies tailored to the Lithuanian biobank system. A mixed-methods design was applied, consisting of semi-structured interviews with experts and an online survey of 700 individuals representing the national population. Conducted in Lithuania in 2021, the study asked participants to reflect on four hypothetical cases of IGF: (1) Lynch syndrome, (2) a pathogenic variant associated with Huntington’s disease, (3) a pathogenic variant linked to cystic fibrosis, and (4) elevated genetic susceptibility to type 2 diabetes. Among those willing to participate in biobank activities, a large majority (81–92%) indicated interest in receiving all types of IGF included in the study. Expert opinions, however, were more divided. While there was consensus that results revealing increased risk for preventable or treatable monogenic conditions (such as Lynch syndrome) should be disclosed, experts disagreed on the appropriateness of returning information related to untreatable or less actionable findings, including Huntington’s disease, cystic fibrosis, and type 2 diabetes risk. For Lithuania, strengthening policies on the return of IGF without broadening the scope of what counts as clinically actionable information appears essential. Two possible routes may support this process: adopting curated lists of genes and conditions, such as those proposed by the American College of Medical Genetics, or applying structured frameworks (e.g., those developed by Berg and colleagues) that assess the actionability of specific findings.
%U https://smerpub.com/article/biobank-participants-and-the-return-of-genetic-findings-results-from-a-mixed-methods-study-in-lithu-npsue1tpui7ggyn