The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise to an obligation to look: high benefit to participants, lack of alternative access for participants, and reasonable burden on researchers. Our analysis indicates that there is no obligation to look for incidental findings today, but during the ongoing translation of genomic analysis from research to clinical care, this obligation may arise.
Open Peer Commentaries.
- The Nirvana Fallacy and the Return of Results
- Reframing the Ethical Debate Regarding Incidental Findings in Genetic Research
- Managing Incidental Findings: Lessons From Neuroimaging
- Legal Implications of an Ethical Duty to Search for Genetic Incidental Findings
- The Duty to Rescue in Genomic Research
- Genomic Incidental Findings: Reducing the Burden to Be Fair
- Ancillary Care, Genomics, and the Need and Opportunity for Community-Based Participatory Research
- A Perspective From Clinical Providers and Patients: Researchers’ Duty to Actively Look for Genetic Incidental Findings
- Incomplete Knowledge of the Clinical Context as a Barrier to Interpreting Incidental Genetic Research Findings