Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? | Bioethics.net

Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? | Bioethics.net

Volume 13, Issue 2
February 2013

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Target Articles.

Health Care Ethics Consultation: An Update on Core Competencies and Emerging Standards from the American Society for Bioethics and Humanities’ Core Competencies Update Task Force Anita J. Tarzian & ASBH Core Competencies Update Task Force

Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings? Catherine Gliwa & Benjamin E. Berkman

Editorial.

What To Do With the Could-Be-Knowns of Genomic Medicine Richard R. Sharp

American Journal of Bioethics.

Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?

By Catherine Gliwa & Benjamin E. Berkman Pages: 32-42

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.

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Open Peer Commentaries.

• The Nirvana Fallacy and the Return of Results Leslie G. Biesecker
• Reframing the Ethical Debate Regarding Incidental Findings in Genetic Research Jeremy R. Garrett
• Managing Incidental Findings: Lessons From Neuroimaging Emily Borgelt, James A. Anderson & Judy Illes
• Legal Implications of an Ethical Duty to Search for Genetic Incidental Findings W. Nicholson Price II
• The Duty to Rescue in Genomic Research Michael Ulrich
• Genomic Incidental Findings: Reducing the Burden to Be Fair Velizara Anastasova, Alessandro Blasimme, Sophie Julia & Anne Cambon-Thomsen
• Ancillary Care, Genomics, and the Need and Opportunity for Community-Based Participatory Research Kaija Zusevics
• A Perspective From Clinical Providers and Patients: Researchers’ Duty to Actively Look for Genetic Incidental Findings Kathryn M. Ross & Marian Reiff
• Incomplete Knowledge of the Clinical Context as a Barrier to Interpreting Incidental Genetic Research Findings Gregory Costain & Anne S. Bassett