ORIGINAL RESEARCH article
Front. Genet.
Sec. ELSI in Science and Genetics
This article is part of the Research TopicInsights in ELSI in Science and Genetics 2024-2025View all 11 articles
Incidental genomic findings in large scale research: using the '3-I framework' to reveal policy considerations
Provisionally accepted
Suzanne Maria Onstwedder1,2,3*
Carla Van El2,3
Wendy Rodenburg1Adrian Thorogood4
Martina Cornelia Cornel2,3
Tessel Rigter2,3- 1Department of Public Health Genomics and Screening, National Institute for Public Health and the Environment (Netherlands), Bilthoven, Netherlands
- 2Department of Human Genetics, Amsterdam University Medical Center, Amsterdam, Netherlands
- 3Personalized Medicine Programme, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands, Amsterdam, Netherlands
- 4The Terry Fox Research Institute, Vancouver, Canada
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Abstract Introduction: Incidental findings (IF) can be yielded in genomic research that analyzes data from healthy participants or patients. The need for clear IF policies grows along with the increase in international genomic research, data collection and sharing efforts. This study aims to inform policy discussions and decisions about IF. Methods: We interviewed key stakeholders involved in Canadian, European, or international research projects. We used the 3-I framework for interview design and analysis, which distinguishes interests (i.e. agendas), ideas (i.e. values), and institutions (i.e. policy structures, e.g. laws) as factors that impact policy decisions. We integrated the three bioethical principles into this framework: respect for persons, beneficence, and justice. Results: Interviewees were from Canada (n=7) and Europe (n=4). Different IF policies are followed and practiced. Policy decisions are impacted by varying interests, ideas, and institutions. Prioritization of distinct interests and ideas varies between policies. Key policy considerations are: determining whose interest is prioritized; determining what is of best interest to the participant; determining who is responsible for what when research and healthcare institutional frameworks create tension; determining what is just and a fair distribution of benefits and burdens between individuals and populations; and determining how scarce time and money should be allocated. Discussion: Explicating policy considerations can help to further discuss and decide how IF policies will impact not only research participants, but also patients, citizens, professionals, the public and diverse populations. Technologies, cultural values, and laws and regulations evolve over time. Therefore, continuous discussions should be held.
Keywords: genetic testing / ethics, Genomics, Human Genetics / ethics, Human Genetics / organization & administration, Human Genetics / standards, Incidental Findings, policy
Received: 31 Mar 2025; Accepted: 15 Dec 2025.
Copyright: © 2025 Onstwedder, Van El, Rodenburg, Thorogood, Cornel and Rigter. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Suzanne Maria Onstwedder
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